For those of you who know me, you know all about Mikayla's latest troubles with Lyme, reflux issues, scarlet fever 3 weeks ago..etc..

Today I took her back to the doctor for what I thought was a yeast infection from the meds they gave her for the scarlet fever.

I had mentioned that she was thirsty all the time and urinating ALOT to the doc last Friday and was told it was probably from the meds for the SF...

Last night she drank a full 8 oz glass of water every 1/2 hour and went to the bathroom almost immediately. So I took her to the doctor today, as they thought maybe she had a urinary tract infection...

Turns out she has type 1 diabetes. Her levels were so high they wouldn't even register on the meter and she was so out of it that she was swaying everywhere and almost passing out.

So we went to a branch of the hospital that is devoted to juvenile diabetes and spent all day there learning how to do testing and how to give her insulin shots, what she should eat.etc..

For those of you who know Mikayla, she is a pretty brave little girl who isn't afraid of much...she even loves snakes..

her one fear???? Needles!!!!!..

This was one of the worst days of my life. I am so physically and emotionally drained that I feel like crawling into the corner and crying...forever.

My husband is in Florida as his grandfather committed suicide ( he is 85 and could no longer use his legs and was in constant pain) and he is there comforting his mom and attending the funeral,

So I had to deal with everything all by myself. Poor Mikayla was stuck with needles about 20 times and is miserable. It took 4 of us to restrain her to get blood and an entire diabetes staff of nurses, nutritionists, secretaries, etc..spent about 30 mins calming her down enough so I could learn to give her the test and give her the insulin shots.

I think that the fear of the unknown was far worse than the shots..I did her blood test and gave her my first solo insulin shot tonight and we both managed to get through it very well.

i am so proud of her for the way she is attempting to adjust to this new way of life and for trying her best to keep a positive attitude.

She has been through so much in 6 years, that her continued strength, unquestionable faith, and spirit simply amaze me.

I think I cried almost as much as she did today...

The hospital gave her a tote bag called "The bag of Hope"..it was filled with tons of information about diabetes, books for kids, videos, and even a beautiful teddy bear named Ruby who also has diabetes.

The bear even has patches where she has to have shots like Mikayla and this bear really was a life saver today during training.

Mikayla is all cuddled up on the couch with her new bear, sleeping..she looks peaceful Looking at her now, you'd never know the hell she went through today..

Me? I'm still a nervous wreck and needed to come here to my lymenet family, for comfort, advice, prayers and support...

Thanks for always being there...

~Missy
 

However, she is absolutely thriving. I just returned from the high school musical where she danced and sang, and she is right now at Friendly's having ice cream with the rest of the cast.

I can see what you have ahead of you, like a landscape that is so familiar, and want you to know that I and many others who have dealt with this over the years, are here to help.

The stress of type 1 diabetes is not understood by many people...don't let that bother you, and rely on support from people who do.

Also, the combination of problems can make getting medical care more complex.

More tomorrow. Take care...you, Mikayla, and your whole family.
 

I'm so sorry for what you gurs are going through.

I don't know if this information is something you can use, but by coincidence I recenlty helped a friend with diabetes 1,
and spoke to a woman at the site I'll copy below.

She uses Chinese herbs that tone the liver, GB, pancreas that greatly help diabetics she works with.

She said in early phases, it has reversed types 1 ..and also in many type 1 cases, the therapies are extremely helpful..tho patients still require insulin.

She is very approachable, and I don't know if she's worked with children..just thought I'd pass it on.
http://www.sensiblehealth.com/

The other thing my friend is doing is the alternative diet to reverse symptoms and side effects of the illness.

The newer alternative diets high in veggies can be far more effective than the Standard Diabetic Diet reccomended, and I imagine easier to learn to eat this way at a young age..
if this is something you are interested in.
It, again, is very supportive and can in some caseslower the amount of insulin needed and help in lots of other ways.

I can try and find the one she is using.

I don't know about the Lyme relation, as I haven't dealt with it first hand. I do know they can be related.

Blessings to you all,
Mo

[This message has been edited by Mo (edited 14 May 2005).]
 

I don't know if it is suitable for children, but there is a great book called 'The Diabetes Solution' by Dr. Bernstein (forgot first name) - he has had Type 1 since he was young (can't remember how young). He is now in his 70's and has been able to control his Type 1 diabetes - I believe without insulin - by this diet.

It is a VERY restricted diet, however, and like I said may not be easy to do with a child. But, can't hurt to check it out, I guess.

DLL
 

I know exactly what you are going thru, my daughter was dx at 13 years old and when they sent her home from the hospital, we stopped at the grocery store, we were trying to figure out what she could eat. Amber and I just stood in the middle of the aisle and cried, I just knew what ever I fed her would kill her.

She will be 28 next month and has given us a wonderful Grandson.

Things will get better, she will learn the routine and it will BECOME routine very soon.

Things are so much better now than they were even 15 years ago when Amber first got it. It is not near as confusing, the needles are very tiny. In time she can get a pump, my daughter has one, she can swim with it and everything.

And unlike Lyme the patients are believed and there are some great activities for JD kids, you need to go online to the Jouvenile Diabetes Foundation and see everything they have, they even have a camp for kids with Diabetes.

I will e=mail you my phone number. If you need to talk, feel free to call.

We were fortunate that we had some real close friends that their daughter was DX at 11 months (yes months) Try and figure out what that baby needs? Anyway they came to the hospital with all the greatest stuff that was on the market. Injectors, testing pens instead of the old (gueateen sp) kind that the hospital was still using.

Just remember the worst is the fear of the unknown, as you learn more about this disease and realize this is something she can LIVE with your fear will suside, because you then will know everything is going to be O.K.

My prayers are with you, and as hard as it is to believe she will even get used to poking herself. Everyone will think she is so brave that she can do this by herself.

Love Cindy ><>

------------------

 

I am glad that you have such loving friend to help you try and cope.

Missy my heart just breaks for you and Mikayla
I am crying as I write this.

I know we all want to help you...
and steer you towards the positive...
But Hun..... Its OK to cry!!!!

I was there when Mikayla was crying,
and begging you ..
please mommy don't do it again...
it hurts
Damn I am still shook up over that!
And I couldn't sleep a wink all night either... must be that Twin thing

And yes I have to agree-
I have never met a child with so much love to give and strength and faith to pull her through. It amazes me too !!

And yes, She IS a real trooper Mis...
But then again so are YOU!!!
I was awed by the way you handled testing her and giving her the shots.
I know inside you were crying...
and I saw you tremble...
But you put on your brave face for Mikayla

Missy I love you and I couldn't Love your children more if they were my own!
We WILL get through this.. I PROMISE !
I love you and will always be here for you!!
Kisses ~ Nikki

Mikayla had a rough night, I had to prick her finger every 2 hours( even while she slept)

She is being as good as anyone facing something like this could be and I am awed by her strength...

I wish I had a tenth of her strength, and while I will never question my faith...hers seems stronger than mine at the moment.

When I got Mikayla settled in for the night, It hit me like a ton of bricks, and I allowed myself a mini breakdown...

Well actually I cried most of the night.

And when the sun came up this morning and I had to prick her finger for the test at 6:00 am..it hit me... that it wasn't a bad dream..it's real and I am very scared, confused, pissed off ! and way to overwhelmed....

I want to share something with you all..for those of you who have ever experienced anything like this you will understand what I am saying...

Yesterday morning, I woke up with a start at 2:30 in the am. Mikayla was once again in the bathroom. And her rash in her private area was irritated again...

As I had mentioned this to her doctors several times, I had decided the night before, that as the docs weren't concerned about it, that I would wait to take her in for a follow up on Sunday or Monday when her pedi would be in.

So at 2:30 am yest. morning, this feeling that I can't quite explain, came over me. It started at my toes and went all the way to the top of my head.

It was like I had a warm chill going through my entire body and a voice or something..told me I had to take Mikayla to the doctor now!

Even then, I debated taking her to the doc yesterday as I though I might have been dreaming. SO at 7:30 am yest, I decided that as she missed so many days from school this year due to lyme, reflux and the scarlet fever, that I would send her to school and take her to the doc on Sunday.

At 7:45, I was standing in the kitchen when I felt something swish through me..( for lack of better terms) and once again a voice loudern this time ..said " Take Mikayla to the doctor now"..

I have never experienced anything like this before and knew as I was standing up, this wasn't a dream. So I called the doc at 8:00 yest and made the apt for 9:00...

At 9:30, I knew she had diabetes and realized how serious the illness had progressed. While we were in the office she actually went into some type of shock and her levels went off the chart and they gave her the first does of insulin...

For those of you who believe in stuff like this, I'm not so sure I did until now...this was a very moving moment.

And I have to add that the specialist for our county and neighboring counties, happened to be working one of his 2 days he works at the clinic..yesterday..

And he happened to be on lunch break when her body went into overload and he saw her immediately!.

And as if this wasn't enough, the nurse who trains parents on testing and injecting insulin was in thier other office, an hour away and for some reason had no appointments. she made the hour drive to the diabetes center and met me there 5 mins after we arrived.

Now I'm a big believer that some things are just coincidental, but I would have to be a fool not to believe that a higher power was working for Mikayla yesterday...

I and my family truly believe she was being watched over yesterday, by a guardian angel or something I don't quite understand...but believe in none the less...

Well, I am all cried out at the moment. My sister called me at 6:30 and I had just pricked Mikayla's finger while she slept and I was crying again...

So my sister, Nikki, is coming to spend the day with us today to help me. My husband is still in Florida and as strong as I like to think I am.. I am not afraid to admit this has taken a toll on me and I need a shoulder to lean on.

My God daughter turns 4 today and Mikayla has been so excited about going to her princess party for 2 months.

I wanted to cancel it, but her doctors and nurses insisted that it was important that I let her go to the party, so she won't think Diabetes has ruined her life.

I need to try to keep things as normal as possible for her.

So as this is a big event, as my God daughter won a Princess party..with a real princess is coming to the party to give the girls a make over, new hairdo's and dress them all up like princesses..they even get to decorate and take home a princess cake...

The doc's insisted I take her.. As I am keeping her sugar levels stable by giving her the insulin and diabetic friendly meals..

So she is out of danger..

I was worried as the party is about an hour and 10 mins from home, but the doc calmly informed me that there are 2 hospitals on the way and that the nearest hospital ( or even our pedi's office) is an hour away from my home..

So it's really only 10 mins further than the pedi. My sister is going to drive us, as even though I am trying so hard to suck it up and deal with it in front of Mikayla..I'm not ashamed to admit I'm a little scared.

Mikayla woke up when I was crying on the phone to my sister this morning and I quickly tried to pull it together.

My son Derek woke up as well and asked me why I was crying.... Mikayla was patting my back trying to comfort me and told him " Because she has to prick me everyday"

Here she is 6 years old, confronting yet another illness, and she is comforting me!!!

She told me that it was okay, that the shots didn't hurt so bad and the pricks hurt, but not too much... and that it would be okay...

The whole time she is hugging me and patting my back, telling me it will be okay! amazing...

Now I'm crying all over again..

Well, I have to go get ready to be made over into a princess with my daughter....

Thanks again for letting me vent and for always being there. I'll check back later..your stories and experiences are truly helping me...

~Missy
 

For those of you who don't know, "ticktalk" is my twin sister Nikki...

Thanks for posting Nikki, well now you made me cry all over again

Thanks for coming with us today, it means more than I can ever say...

Love ya,
Missy
 

Also, there is absolutely no need to restrict your daughter's diet, once you get going with this, especially with the pump. Pizza, candy, ice-cream and cake, the works. In fact, to avoid lows, Mikkayla may need more sugar than most!

Callouses will soon form so that the pricks don't hurt much (my daughter has tested 10-12 times/day, including overnight, for 10 years and the callouses make her an awesome guitar player!).

Is there a way we can communicate? Does Mikayla attend school? There is a lot of help available...which you will find easily or others can help you find.

A piece of advice: stay as detached and matter-of-fact as you can for the shots and tests even though your heart is breaking. Practice in your mind kissing the insulin, or do it in front of Mikayla. That little vial has already saved her life and will continue to keep her alive the rest of her life. This makes the shots a lot easier! (The pump is awesome and shots won't be that frequent once you guys get into that anyway)

 

as a nurse...I would have to disagree with the above poster somewhat..in the beginning until you know how mikayla will 'fall' as a diabetic you need to be very careful of what she eats..and watch her highs. I'm sure the docs told you this. She could spike on you very quickly in these early stages...

once she is established after a few months you'll feel more comforable with her highs and lows. SHe needs to be consistant with her blood sugar levels until most docs will consider putting her on a pump...but once on one they are like having a new pancreas adn you CAN eat anything as long as you remember to bolus the short acting insulin for it right away. This is when mikayla will feel normal again..she will be able to eat many foods like her friens can..

but just be very careful inthe beginnig while they are still finding out what short and long acting insulins work best for her, what carries her through the day to keep her on a steady level and not drop her very low or get her very high into dangerous levels again..that's why they want you to watch her diet closely...it can spike so quickly...I"m sure they showed you how to test her ketones in her urine if her blood sugar is over 300 etc...

remeber she is just starting thism and it will take a little while until her body adjusts to it...AND to findig he correct doses of insulin etc...but you guys will get there.

sounds like you have one brave little girl there...hugs andkisses to you both..

lisa
 

I have NO personal experience with Diabetes...this is just something that I have to offer...nothing more, nothing less.

I would only ask that you understand that when I see something happening to a child...I refuse to shut up.
(I am the same with Lyme, and Cancer...of which I have FAR too much experience.)
\
Here is a pasted copy of my e-mail to Missy, take it for what you will,,it may help, it may not.

Dear team,

Please enjoy the following personal experience and share this story with others. However please be sure you do so in the correct manner. It is highly unusual that a recently diagnosed type 1 diabetic would have a reaction like the one you are about to read.

It is imperative that you make no claims that the Mangosteen Juice will do for others what it did for this individual, but you may tell others this story which was so kindly shared. Just tell them, ``try it; we think you will be pleased with the results.'' Then ask them to forward any significant results to us so we may likewise share them with others in the hopes that others will have the chance to try this product to see what it may do for them, if anything.

April 27, 2005

We had noticed that our six year old daughter had not been herself lately and complained of being tired constantly and went to the bathroom quite frequently. She was drinking a lot of water, but we had given her a new water bottle which she liked, so we did not think much of this. We were not aware that these were signs of diabetes. One morning, she woke up and did not have the strength to get herself out of bed. I got her out onto the couch and called an ambulance. By the time we got her to the hospital, the Doctor said that this was the last day and if we had waited any longer, she would have been in a coma.

So, on January 18, 2005, our beautiful six year old daughter, Savana-Lee, was diagnosed with Type 1 Diabetes. We are vegetarians and our children have never had any dairy products, meat or white sugar, so this diagnosis was a horrible shock to us. We were determined to immediately do whatever we could to turn our little girl's life back to the way it was.

It felt like a knife in our hearts to see our normally happy, energetic six year old crying, scared and having to get finger pricks done 4 to 6 times a day and having to see how frightened she was when she saw the needle coming.

We just couldn't sit back and say "well, this is the way it is and she'll have to live with it and we'll have to watch her suffer". No way! I knew in my heart that there must be something out there to help her, something that the Doctor's didn't know. We started by really changing her diet. Then sixteen days after Savana-Lee was diagnosed, we read about a product, a mangosteen juice. We started her on it that afternoon and to our amazement, her bedtime blood test, which was usually 13 to 20, was now 3.5! From that day on, her numbers kept dropping drastically and we kept lowering and lowering her insulin dosage. Soon we came to the point where it was a full time job just trying to keep her from passing out all day! Her blood sugar was dropping so low. She went from 25 units of insulin a day down to just 1, yes only one unit and that was still too much! After 24 days on the Mangosteen Juice, her Doctor took her off of insulin completely! Her doctor said that this never happens and to keep on doing what we were doing.

Forty-one days after diagnosis, Savana-Lee was insulin free!!!

It has now been about 5 weeks and her blood glucose numbers are still in check.

Now, we sit back and watch her smile as she sips away on her Mangosteen juice. That's more like it!

Thanks so much [Mangosteen Juice].

Karen & Jimmy Fuller

------------------
Now is the time in your life to find the "tiger" within.
Let the claws be bared,
and Lyme BEWARE!!!
Iowa Lyme Disease Assoc.
www.ildf.info

 

I've heard countless testimonials of people that are insulin free by using homeopathic remedies. Scour the net, and I'm sure there are people here that know much more about it than I. Mikayla is one tough, brave little girl, and we're all pulling for her.
 

I am going to ask Dr Taylor about this one...although I know what part of his reply is already...inflammatory response...stop/control it.

His website www.myremedi.com

Best of Wishes,

Trout

------------------
Now is the time in your life to find the "tiger" within.
Let the claws be bared,
and Lyme BEWARE!!!
Iowa Lyme Disease Assoc.
www.ildf.info

 

Magnesium is supposed to help diabetes. Marnie knows more about that.

If you, or Mikayla, have another rough time, perhaps 2 mg valium would get you through it.

Dr B works with an endocrinologist who travels from the midwest? for one day to see his patients. Perhaps she could help you. Endocrinology problems are common with Lyme.

A family member had scarlet fever 14 years ago and, so far, there have been no repercussions.
 

Type 1 is an autoimmune response, which is genetically determined (and probably triggered by a pathogen) and involves the destruction of insulin-producing cells. This is a different disease than type 2 diabetes, in which the body still makes insulin but the body isn't using it effectively. Only 5% of people with diabetes have type 1, which is permanent and lifelong.

There is a honeymoon period after diagnosis of type 1 when insulin needs drastically plummet, especially with young children. But after that, the highs return and you are left with a life-long need for insulin. (Perhaps this is what happened with the juice)

Type 2 diabetes can be very much helped, even put in remission, with improvements in diet and exercise, since these lifestyle factors can affect insulin effectiveness. This isn't true of type 1. Nothing reverses type 1. (In the honeymoon, some doctors have tried minute amounts of insulin to delay the inevitable, but this doesn't reverse it)

People get confused because some type 2's do take insulin. This is different from a type 1 who has NO insulin, and is completely dependent on external injected insulin to stay alive.

Homeopathy, supplements, exercise and all sorts of modalities might make the injected insulin work more efficiently. But with type 1 diabetes, a person will always need insulin to live every single day of his or her life. Going without insulin for even a few hours can be life-threatening.

We just get very freaked out when people start talking about going insulin-free or even reducing insulin. There's nothing wrong with taking insulin if your body doesn''t make it...it's essential to life.

I have to stop reading this thread because I get frustrated with well-intentioned misinformation, and I'll drive everyone crazy w/details, but Lymebrat please let me know in a separate thread if I or my daughter can be of any help.

The American Diabetes Association has a great site (and magazine)...including a great sample 504 plan and health care plan for school. The Juvenile Diabetes Research Foundation has support groups and also folks who will support you in the early days. Diabetes Health in San Francisco is the best publication.

In California, kids are put on the pump right at diagnosis, but on the East Coast MD's are slower to put kids on the pump, although this seems to be changing. Go for it!

Things are much more natural and flexible on the pump, although it is still a lot of work, and involves a lot of testing. Pumpers can pretty much eat anything at any time, as long as blood sugars are okay. Not too many shots on the pump, but every few days you do have to insert a needle that puts a plastic catheter under the skin (then the needle is pulled out).

The beginning is hard but it will get much better. Carry glucose tablets everywhere! Please take care. Our thoughts are with you.

[This message has been edited by Lyddie (edited 14 May 2005).]

[This message has been edited by Lyddie (edited 14 May 2005).]
 

So sorry you guys are going through this.
I hope yor daughter is feeling better soon, and you too!!

Take Care
Lymiecanuck
 

Yes, visit the American Diabetes Assn. site. They have an excellent magazine, DIABETIS FORECAST, with monthly articles on 1 & type 2; plus a KID's section of articles.

They also have a FREE ONLINE WEEKLY newsletter. Sign up for that.

best wishes to all

Bettyg, Iowa
 

I am so sorry about MiKayla. Today is the first day i have free time (hired a babysitter so i could have some me time).

I popped in to see how everyone is doing.. now i am just crying my eyes out over MiKayla.

Hope ya'll had a wonderfully great princess party, Hugs to you.
Ya'll in are my thoughts and prayers always..

I will post an update on our lyme family in general.

Starr
 

When first discovered, she was in the psych ward..They then thought all of her problems were from the diabetes..HOw I wish that had been true..But she was hospitalized for 4 days to stabilize..She has been in once since..AND if there comes a time when she is very high and no matter what you do, nothing gets better, fight to get her back into the hospital..Sometimes the meds can really mess up the blood sugars..Do not play around if there is a series of highs or off of the meter readings..

But my daughter also has some serious psych issues and recently read some info on those meds and in one report, Prozac was found to be a possible culprit..

A friend of ours has a daughter with type 1 that they think may have been directly caused by a vaccination..

NO one knows proof positive,what exactly cause either girl's diabetes, but you can survive and thrive with diabetes..It is tough and takes a lot of education but it is possible..Unfortunately it is more difficult, I think, to control it when you have lyme disease..They seem to work against each other. And it is definitely horrid if you throw in the psych issues.

School causes a whole new set of issues..You must have a good repore with the nurse and teachers and there may be a need for education for them.This may be needed every few months or annually with new classes. We had a few very problematic teachers..I asked for a meeting with all .

I took a big styrofoam ball in with push pins in it..It showed the number of finger pricks she had in a month..A few tacks fell out and I said oh that is for when you have to redo the test because the machine wasn't working properly or you did not have enough of a sample. I also took in cherry lip balms(dollar store specials) to represent the number of shots in a day..

Additionally, I took some lancets in case any of them wanted to do a finger stick to see what it felt like..No takers..

Then I poured out her meds onto the table..And started telling more of her story..A number of them started clearing their throats..One later came up and was crying..But none of them treated her poorly after that. They can blow off what you say, but an actual visual demo stays in their memory..

Lyddie is very knowledgeable and can probably offer more advise than any of the rest of us. She has had some real baptisms by fire..

You will need to go with a restricted diet until things stabilize..I think for our daughter it was a few months..Then there was a honeymoon and we thought she was doing so much better..It was short lived.

The Dr has managed to enable our daughter to eat almost everything by covering all of her carbs..But it doesn't work when her lyme psych things are raging..He refuses to order a pump for her because of these complications.

There are also ultra fine lancets and needles..They are so much easier to use..And the pens are greater..You do not have to draw up the meds..Just dial and give the shot.

It is also less painful in the stomach..Some of the new lancet pens can use the arm..My daughter rarely has enough flow for that..Another good idea is to drink enough fluids to help with the blood flow..

Good luck..There is great current research and this may soon be a fixable disease..

[This message has been edited by lymemomtooo (edited 14 May 2005).]
 

I'm really sorry this has happened. It's just so unfair. I hope each day gets a bit easier, though I'm sure it'll never be easy.

Sending up prayers for you and your family. Give Derek a hug from me, will you? He's probably afraid this is going to happen to him too.

For ALL of you!

------------------
oops!
Lymetutu
 

My e-mail address is [email protected].

Nikki You are both so blessed to have each other, I am very close to my sisters and my twin daughters share a special bond also (only one has diabetes)

It is wonderful to know that probably by the time Mikayla is a teenager there may be a cure for type 1 diabetes, they have made so many great strides in research just in the last several years its truly unbelievable.

We were away from home when my daughter was dx, the Dr. yelled at me for just coming straight to the ER without calling first (he thought she had the flu) When they got her blood work back she was over 700. he apologized and told me she would have died if I had waited.

I am proud of you for listening to your mothers instinct. This is why God gave it to us.

Take Care and God Bless
Cindy ><>

PS. Keep a journal, it will make everything easier in the long run and it will get Mikayla used to seeing you write everything down so when she starts taking care of this herself it will be a good habit.

------------------

 

Thanks so much for all the posts.. it's so nice to know I have all of you to lean on at a time like this.

The princess party was alot of fun. Mikayla had such a great time and it took her mind off the diabetes for a little while.

Her pedi called me this morning and told me that the meters they used to check her levels yesterday only went up to 900...Mikayla's read "high" which meant it was over 900 when she went into the diabetic shock.

And her keytones were extremely high as well..these two combined are a great cause for concern and I have to continue to monitor her every 2 hours and am keeping a journal of everything she eats and her reading before and after meals or snacks.

Today her readings are ranging from 378 - 595. Which is still very high as a normal range is somewhere between 70 and 120 ( i think that's what they said..I know it's 70)

(There is so much to learn about this type of diabetes that it is truly overwhelming..I am sure in a couple of weeks I'll be a pro..but right now I feel very inadequate and very scared..)

They are more concerned with the insulin making her levels drop below 70 which is why I have to keep charting her readings and I have glucose tablets on every surface of the entire house...seriously I have at least 10 tablets in every room.

I am taking no chances!!!

Lyddie, thanks for clarifying this...At my training session and again today when I talked to the pedi, I was forewarned that many people confuse type 1 and type 2 diabetes.

And that type 1 can not be cured in any way shape of form by dieting, supplements etc... I was told about the honeymoon period where her pancreas may work a day or two and produce insulin..

and warned that this is only a temporary thing and that it is not to be mistaken as remission, as it only lasts for a short period of time and that Mikayla's body is not capable of ever producing enough insulin to keep her stable.

So while I am not discounting anything said here, and I truly appreciate all the advice and suggestions..

I am so overwhelmed with trying to learn the "basics" to keep my baby alive, I simply can't even contemplate experimenting at this time.

I am so scared and overwhelmed that I feel like vomiting everytime I have to mix her insulin in the syringe and inject it in her arm.

Believe me if the doctor gave me any hope that there was another way or hope, other than sticking a needle in my precious daughters fingers every two hours and giving her insulin shots everyday, I would sell my body on the street corner to find a way to get her the treatment that would spare her this pain and fear...

I feel so inadequate right now..I am flying by the seat of my pants and pray to God that I am doing everything right. it is so damn scary injecting the insulin into her little body.

And everytime I stick her fingers, (which now both hands look like pin cushions) I silently pray/beg that the reading will be below 500.

Which is still ungodly high in my opinion, but the docs said that was the magic number... as her sugar levels have been so high for who knows how long, that it will take a bit for her levels to get back to normal.

Today when it hit 595 I was shaking so hard I had to sit down.

Luckily I have found an inner strength I never knew I had, to not show my fears and anger when Mikayla can see me..

To her I am the bravest and bestest mommy in the world and she draws strength from her belief that I am this incredible mom..

So even though I feel like a fake, I will continue to put on a brave front so she can continue to feel secure in my ability to be the super mom she thinks I am...

In truth it is me who is drawing strength and faith from my 6 year old daughter!!!!!..she is wise beyond her years and is taking this life altering news better than her mom

I wish I was able to be as capable as she thinks I am. Inside I am so afraid and irate that this is happening to her...

I know it's not rational to feel this way and trust me I am so thankful that I listened to the voice that told me to get her to the doctor yesterday, as who knows what might have happened if I hadn't taken her in when I did...

Thankfully by the grace of God, I will never have to know what might have been and I know once I get over the fear of the unknown, I will be better able to adjust to our new lifestyle.

I keep reminding myself how fortunate we are to be living in a time where there is excellent treatment for type 1 diabetes and that with proper insulin doses to regulate her levels, she can lead a relatively "normal" life....

She is very fortunate, I know that...honestly I do.

But right now I am still in my anger stage and need this time to adjust..

Smokey, Lyddie and Lisa, I will write more when I have more energy..I am drained right now...but I wanted to be sure to thank you for letting me know that I'm not alone and for giving me the websites to find the help I need for this disease... I was up all night reading and learning...

Okay, I should try and get some rest, it's hard to sleep when you have to wake up every 2 hours..but thankfully with the new testing machine they gave me, I can do most of the test without waking Mikayla up...

She only wakes up when I prick her finger and falls right back to sleep...

I hope I am making sense, I am so tired I feel like I am babbling with the keyboard..

Thanks again!

~Missy

You are doing so great!

Something I thought of, when our friends 11 month old got it, they used to test on her toes... more than her fingers. I didn't know if they told you that you could do that.

Just so you know the honeymoon period may last longer than a couple of days, sometimes months.

I really want to encourage you. Think back when you brought your first baby home from the hospital, and the first few days even weeks we feel so inadequate and scared, then we become experts on our own babies, what each cry mean, what comforts them. Then we realize were OK, actually were pretty darn good Moms. This will be the same way. You will be an expert on your daughters diabetes. Remember God will not give you anything you can't handle and he will be with you every step of the way, just as He gave you what you needed to recognize something was seriously wrong and get her in to the Dr. right away. He will continue to to guide you through all of this. ( I hope this makes sense).

God Bless
Cindy ><>

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I had followed the regime myself, albeit for mildly abnormal glucose readings NOT TYPE 1 however.

DLL

[This message has been edited by dontlikeliver (edited 15 May 2005).]
 

[This message has been edited by Lyddie (edited 15 May 2005).]
 

[email protected]
 

I'm not sure but I think that with injections the cost of insulin (long-acting plus short-acting) would be about $100-125 per month. I have never bought syringes w/out insurance but they aren't all that expensive, I don't think, even if for 150 syringes per month.

Every person with diabetes deserves and has a right to an insulin pump. A good endocrinologist would write a letter of medical necessity. A patient's HgA1c levels (3 month average blood sugar) goes down drastically on the pump!

Insulin pump companies have programs to help low-income or uninsured patients get a pump. I helped advocate for an elderly friend who did not exactly meet their income guidelines, and Minimed still helped her out. Medtronic-Minimed, Animas and Deltec are all good pump companies who seem pretty dedicated to patient health.

There are government programs for children, the elderly and others who can help with this too.

Life is so much better on a pump, and so much healthier, that I hope you or whoever you are connected to who has diabetes, can get help from an MD to get a pump!

 

Some people actually CHOOSE not to use a pump. One thing I dont understand is that testing strips are not covered by insurance.

So far as restricting the diet. It is not good for anyone (diabetic or not) to eat garbage junk food. My father often comments that I am much more restrictive about my food intake than he is as a diabetic.

Healthy food habits are learned from parents. It is a shame that our society sees restrictive in terms of not filling our bellies with McD's.

On a side note, in the early days of medicine Type I was believed to have been caused by an unknown virus either in womb or early in life. There are some researchers that are starting to look at this theory again.

[This message has been edited by Kara Tyson (edited 15 May 2005).]
 

In the book where they ask you to write down her blood sugar numbers, I use 1 of the columns on the left to report this:

L 1,2,3,4,5, R 1-5 ---

it's my method of keeping track of what fingers I'm poking for my BS no.

I can't remember which one I did when.... so I came up with this method for myself.

I take 2-3 daily. So I start on the outside to poke, then inside, & if needed....middle for a 3rd poke daily.

Hope this method might help you out. It sure has saved on my sore fingers.

bettyg, Iowa
 

You are a trooper.

I do understand the basic differences between the two types of Diabetes...but, I just wanted to send you some info...whether it helped or not.

Try to relax....don't allow yourself to get too run down...you may relapse.

Trout

PS...Your daughter sounds like a peach.
 

The first few months are definitely the hardest. There is so much to learn and I know you must feel overwhelmed. I did, and I also went through a period of mourning - I guess for my child's future, but actually in the time since he was diagnosed, his diabetes has rarely slowed him down or prevented him from participating in anything he was interested in. It is very hard with a young child to develop that mindset (- to let them participate in almost all activities), because I wanted to protect him from every possible hurt, slight, danger or disappointment. It was very difficult for me to not overprotect him. Although, in the beginning, I don't think that is as applicable because you have to protect them from low blood sugars, ignorant people, etc. . The year my son was diagnosed our situation at school was a nightmare with a very uncooperative and ignorant first grade teacher. I hope you will be in a more supportive school environment. Since then, most of his teachers have been great and very conscientious about his care. Believe it or not, her diabetes care will eventually become routine and you can relax more about the activities she might want to enjoy. Just make sure she never leaves the house unprepared for a low. You can get glucose tabs in little packets of 2 each and they are very easy to carry this way.

A couple of practical suggestions. Our son was terribly afraid of needles and would hide behind furniture and kick & scream at test time until we got his doctor's okay to use his toes for testing. His toes weren't nearly as sensitive and he soon became much more compliant. His three year old sister even got in on it to show that she could be brave too. The doctor only would allow this for the first year because of possible foot complications, but he voluntarily gave it up before then. Later we switched him to a meter that would allow forearm testing. There is also one that allows palm testing. Our son is now 17 and has been back to pricking his fingers and like Lyddie's daughter, the callouses make for some awesome guitar playing.

Also, before we started him on the pump, we bought an injector for his shots. The needle is prepared, then loaded into the injector, push a button and the injector quickly pushes the needle in and to the right depth. Much easier and he liked to do it himself.

When we did start him on the pump at age 8 or 9, life became much easier. Our doctor gave us a prescription for Emla cream to numb his infusion site prior to insertion. We had tried ice, but that didn't work as well. Just keep in mind that it takes 30-60 minutes for the cream to become effective and you have to get the cream off prior to insertion so the adhesive in the infustion set will stick to the skin. Until he was about 13, he loved doing demonstrations on the pump for his class - most of his teachers were very accomodating and it helped dispel some of the mystery for his classmates.

With the pump, he was able to eat a much wider variety of foods and the timing of his food was no longer as crucial. The downside is, there is a temptation for them to eat everything under the sun, especially once they reach adolescence.

I would encourage you to read as much as you can about type 1 diabetes. The ADA has a good website with some very good suggestions pertaining to school and 504 plans, etc. We subscribe to Diabetes Forecast and we used to subscribe to Countdown (JDF) and another publication whose name is escaping me at the moment.
Check out your local library. I think I read every book on diabetes that ours carries.

As hard as it is, please believe me that in time it will become easier. And even though it becomes routine, you do still have to remain ever vigilant for lows and highs. From your previous posts I can tell that you and Mikalya are very strong and I am sure you are very proud of her for being such a trooper. I am keeping you in my thoughts and wishing you all the best.

One more thing, it is almost universal for type 1 diabetics to go through a honeymoon period in the first year where the pancreas starts to produce some insulin again. We went several weeks with no insulin at all in that year. It is a cruel trick of nature and very easy to let your hopes get up, but if you are prepared it is not as difficult when the sugars start to elevate again.

There was a post on Lymenet a few weeks ago about a boy in Japan who received an islet cell transplant from his mother and was cured (previously donars were deceased), so there is always hope that one day this disease will be beaten.

Suzy
(Sorry this was so long)

Thanks for all the posts..

****Update****

Mikayla's sugar levels were ranging from 425-490 today. Her doctor calls me a couple of times a day to check on her and assures me that this is okay.

When I went to the pharmacy to get her prescriptions filled, she was dizzy and scared the day lights out of me. Luckily the pharmacists was there and said I was doing everything right and that it will take a while for her levels to get back to normal...

THE good news is that I am no longer almost vomiting everytime I have to inject her with the insulin..phew!

She is still dropping weight...does anyone know when her weight will stabilize?

Mikayla only had 2 crying spells today and is truly taking this life altering change, much better than I ever could have hoped for..

We have to go to the diabetes clinic tomorrow and the hospital for more testing and training.

I think they are concerned about her keytones being so elevated and want me to test her urine now as well.

I feel so ignorant about all this and have sooooo much to learn.

I will let you know how things go tomorrow...

Thanks again for all the help and support!

~Missy

p.s.

DLL & Trout please know that I truly appreciate your advice and support and when I am less overwhelmed, I will definitely look into everything.. I know you just have Mikayla's best interests at heart and am thankful for friends like you guys

 

She's going to have ketones with blood sugars that high. I don't understand why they are still so high...Was Mikayla inpatient at all?

My daughters' blood sugar was 29 the first night she was diagnosed. They overdid it a bit with the insulin. Is MIkayla's doctor afraid of a low? Is he/she an endocrinologist or primary?

Mikayla will stop losing weight when her blood sugars come down and the glucose from food is absorbed in her cells instead of coming out when she pees.

Maybe other people had experiences that were different from ours, but my daughter was inpatient for 5 or 6 days and they brought her down fast. Scary that way, but she sure didn't have ketones.

Can they step things up a bit for Mikayla? Maybe the clinic will get Mikayla on a program that is a bit more aggressive, Monday.

[This message has been edited by Lyddie (edited 16 May 2005).]
 

--Annie

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Lyme Out Retreat Website

Lyme Disease Awareness Products

Click here to join Lyme Pals.

Click here to see my Lyme journal.

 

You're doing great. This can't be easy.

I'm really glad you have a few expert Moms like Lyddie, Smokey, Lymemomtoo, SueZ Q, Kara and the others who know this illness and are here to help, especially when you are learning so much. (I like the newborn analogy.)

Between that and your family and the Docs, she's in great hands.

Many Blesings,
Mo

[This message has been edited by Mo (edited 16 May 2005).]
 

Were off to the diabetes clinic today, so I'll update you all when I get back..

Lyddie she was diagnosed by the doc on call at her pediatrician's office. And as fate would have it the pedi endocrinologist was at the clinic that day. ( he only works there 2 days a week...and he was on lunch break and saw her immediately)

I was told that 3-5 years ago, she would have had to spend about a week in the hospital, but now things are made to let the child go home so it's less stressful on them.

Plus we had to spend over 4 hours at the juvenile diabetes clinic with 4 nurses, a nutritionist and her new diabetes doctor met us there as well.

I learned how to give her teddy bear ( who also has diabetes) shots first and I also gave her the second shot of insulin on my own ( of course with nurses standing by)

I also learned how to do the blood tests, and how to record the reading, keep a food diary, plan meals, etc.

Her doctor calls me every morning and afternoon to check her blood sugar levels which have dropped to 400 this morning

The level usually goes up when I do the test 2 hours after she eats, and I was told this was normal.

The reason they told me they are taking this slowly is that we have no idea when the diabetes started and they know that when she was in the office her levels were over 900 ( or higher as meter only went to 900)

So from what I understood, they didn't want to lower the level too fast or she'd go into some type of shock...so they are lowering it slowly.

As for the keytones, I really don't know much about it, other than it was high/elevated or whatever they call it and concerned her pediatrician.

I was told that I am suppose to be testing her urine at home and that they will teach me how to do all that today at the diabetes clinic.

I was very impressed with the diabetes clinic..it is a branch of our local hospital and the entire first floor is dedicated to diabetes and there is also specialists who do pediatrics.

The nutritionist spent some time with us using realistic looking food in correct portion sizes to teach us what a carb was in diabetic terms..which food are good to eat..

She told Mikayla about splenda and how she can no longer eat sugar etc..

They gave her a beautiful teddy bear who also has diabetes and it has colored patches at the injection sites and we got to help Ruby ( the bear) by giving her insulin shots and testing her blood.

Mikayla even got to prick my finger and test my blood, but she got too scared and couldn't do it, so the nurse did it for me.
( and it did hurt a little I must say )

Mikayla goes to the Children's hospital at Dartmouth ( Chad) for her cyclic vomiting syndrome, but so far they haven't set up an appointment for her to be seen for the diabetes.

Someone at some time mentioned sending her there, but the doctor at the diabetes clinic is excellent ( or so they say ) so I'll wait and see what they say today...

I feel like I am flying by the seat of my pants, but overall, I think I am dealing with all this pretty well.

We went to the pharmacy yesterday and I was advised to buy a diabetes bracelet which was way to big and the chain hurt her wrist, so my husband used some cording to put it on, until we can get a child size one.

The clinic gave me the address to order cute ones for kids, I just haven't ordered one yet...

And I bought a diabetes cookbook yest. and found some sugar free candy at the pharmacy..but noticed it is sugar free but does have sugar alcohol..so I'm not sure if she can have it..I'll have to ask the doctor about that today..

Okay, thanks again everyone..you have been a blessing!!!!

I have to get Mikayla ready to spend the day at the diabetes clinic.

Wish us LUCK!!!

~Missy

They may be talking about avoiding "insulin shock" which is low blood sugar. I believe that if Mikayla has been very high for a long time, then she will actually feel low at a higher blood sugar than is normally considered "low," so maybe that is why they have to be careful. LIke I said, inpatient, they sure did bring my child down quick but it was problematic...

The only other thing is that once Mikayla does come down, she'll start having lows. Lows happen a lot, frankly. Noone warned us about this and if I could change one thing about our first week, it would be to know that. We went grocery shopping and my daughter started crawling on the floor (she was 4) and couldn't walk, so I had to grab some juice off the shelf. Noone had told me to carry anything with us.

Juice boxes are good but the fastest are glucose tablets, as we have all mentioned already. We wouldn't go anywhere without at least a whole tube of them. They come in jars and tubes. Buy jars, and use them to refill the tubes. The medical folks will probably tell you all this anyway.

Lows are EASY to treat so I don't mean to scare you at all, just let you know what our biggest challenge was at first.

I was trying to remember if it was Mikayla who had the cyclic vomiting. If you look back to some of your posts, I suggested that this vomiting might result from high ketones. One of my kids (ironically, not my child who has diabetes) had episodes of vomiting from "ketotic hypoglycemia, but ketones from high blood sugars also do this. This may have seemed off the wall to you back then, but I wonder if this was a first sign...? I remember suggesting to you that you test Mikayla's blood sugars when she was having the vomiting. Hopefully, if that is at all related to the diabetes, she won't have those episodes again. Or maybe it's unrelated, just a thought.

We see a very aggressive doctor in Waltham for diabetes: Stuart Brink 781-890-3610. He travels all over the world helping children, including orphanages in China and Romania, and is on the board of JDRF. He's excellent with young children. He is an advocate of tight control.

We decided to do very tight control because fluctuating blood sugars seemed ot have such an effect on personality and functioning for our daughter. With near-normal blood sugars, she sparkled (the kindergarten teacher's word) and she got fuzzy and out-of-it if her sugars were above 200.

I read a letter to a magazine by another mother who said that tight control had "given her back her child" who had been emotionally "labile" with looser control.
This may not be relevant to Mikayla, but i was grateful to this mother so I mention it for your later consideration.

At 15, blood sugars don't seem to affect my daughter as much but for school especially it still seems important to stay between 70 and 180 or so for focus on learning. Not that she always achieves this...

Right now you are dealing with the basics and reading your e-mail brings back a lot of memories about what that was like!
Hang in there and again, let us know if we can help.

Her is a good site:
http://www.laurenshope.com
 

A thought..We had our daughter at the diabetic ed bldg, a part of the complex..The head nurse was to give her a flu shot..This was the year that she was diagnosed..She inquired about numbers and how our daughter was doing. It was rough at that moment..

She stopped everything and did a stick and did not like the results..We had her numbers with us and she was very upset..She told us to wait.

She went thru to the diabetic section and came back with a new Dr, one that specialized in pediatric diabetes and a completely new med protocol.

We had been mixing two types of insulin and it has been a couple of years, I can't remember what it all was..But she had her switched to Lantus and humulog..It has been a great help..

If you continue to have trouble getting the numbers down, and do not take the above meds..perhaps you could inquire..Our daughter is now on NPH and novolog..It has helped with control..

Also there are many meds that affect blood sugars to either extreme..Read all of the fine print in the med enclosures..

And there was a time when we had to hospitalize our daughter do to inability to get it down..Demand this and fight for this if necessary...Insurance does not like to do it..

The Dr thought she was being non-compliant..Which is frequent with teens..Well, the hospital didn't get it down either, so the Dr finally apoligized to both of us.. There was something that was affecting it that no one could control.

Stress can also wreck havoc with blood sugars..

Good luck..It seems that you are doing much better..lymemomtooo
 

Our daughter went on the pump in 3rd grade (she's now finishing up 9th) and the fine-tuning that the pump enables us/her to do has made all the difference.

The pump has a continuous "basal rate" of insulin which is programmed. You can actually program up to 12 rates per day, so that, for instance, you have much less insulin at 1am when they run low, and much more at 4am when they run high, etc. Then you program "boluses" of very specific amounts of insulin, determined by a formula of carbs to insulin (say, one unit for every 12 grams) which matches insulin exactly to food eaten.

If it is raining and the insulin rate is higher, then the sun comes out and you are going bike riding, you just turn the insulin down! With injections, you are stuck with what you took and have to drink lots of juice to exercise in that situation.

On the pump, as long as you are doing okay, you can eat anything anytime, so pizza after play practice, parties, etc, are never a problem. You can also eat an appetizer, do insulin, eat the main course, do insulin, have a cookie, do insulin, and decide to have another cookie and do insulin! No problem with sugar or any other food.

(BTW diabetes research has debunked the idea that people with diabets need to avoid sweets..actually, white bread, rice and potatoes make blood sugars spike more than ice cream, candy or cake, which have fats that slow down the spike. Fruit can really make blood sugars soar too.)

On the West Coast, MD's put newly diagnosed kids right on the pump, but they are so much slower on the East Coast. I really don't understand why. We use the Minimed Paradigm-have tried others but always return to Medtronic-Minimed.

Lymemomtoo, what was your experience with initial care? I have heard that Dartmouth runs kids high and wonder why it is taking so long to bring Mikayla down.

We realized that the reluctance to do anything "tight" with kids may stem from fears of liability. The kids have a right to feel well asap no matter how stressful it is for the rest of us! (Or how much legal danger doctors feel they are in.) And we certainly did have stress with lows at first. What happened with your daughter at first?

[This message has been edited by Lyddie (edited 17 May 2005).]
 

I just wanted to thank you all again for all your help in helping me adjust to all of this..I truly appreciate you all sharing your stories and experiences!!!

***** Update*****

Mikayla is doing a little better today. we spent the day at the diabetes clinic and they treated her like a princess..they even gave her a princess pen

We met with the doctor, 2 nurses, a diabetes educator and a nutritionist. And her PCP calls every day to check her levels..so in truth I think she is receiving better care this way than she would have being admitted into the hospital...

And stress was a bit of a factor in this decision as she went through some pretty heavy testing when they diagnosed her with the cyclic vomiting when she was 2 and she hates hospitals almost as much as needles.

Her levels are ranging between 380-555 the past 12 hours and the doctors are not concerned about this..they are more concerned about her levels dropping too quickly.

Mikayla got dizzy again yest, and even though her number was 428, the doc said that as her levels were 1000 on Friday 428 is low for her at this time and her body thinks is reacting to what it thinks is a low level.

I swear the more I learn about this, the more confused I get.. but I think I am doing pretty well.

The educator and nurse told me yest that of all the parents who have had to deal with a child going into diabetic shock, and everything involved in taking care of the child, that I am dealing with it better than any other parent they have seen...

I don't know if they were saying that to make me feel better or not, but it did help me to not feel so inadequate.

Sometimes I get so overwhelmed, I wonder if I will ever be able to remember everything and second guess myself all the time..

But I know in time Mikayla and I will be old pros at all of this.

They did up her insulin 1 unit for 3 days and will up it a unit at a time until we can figure out the right does..plus with the honeymoon period, it seems like it will take some time to get everything stabilized..

We meet with the nurse again on Thursday and the nutritionist, educator and nurses next Tuesday..so I'm glad there not just leaving me to do it all on my own.

The educator told me that for now, I am on a need to know basis ..she said that if she told me everything I would need to know about type 1 diabetes, I simply wouldn't be able to remember it all, they have briefly explained everything and are concentrating on teaching me the basics now and will go into more detail about pumps..etc at a later date when I'm not so overwhelmed.

And I was also told to make sure I have juice boxes, crackers with me at all times and that I need to have glucose tablets in every room of the house, my purse, school the car etc.at all times just incase her levels drop.

Yikes, talk about scaring me to death, but I am glad they spent so much time drilling this into my head as I now am very confident that I would know what to do if her levels dropped into a dangerous zone..well almost 100% confident

Lyddie, I do remember you mentioning the keytones, but I never really understood what you meant until now. I do remember they tested her for diabetes when she was 2, but I don't think they have in the past 4 years.

Like Lyme disease, unless you are having to personally deal with the disease, one simply can not understand the disease in it's entirety..at least I couldn't.

I thought like alot of people think that type 1 diabetes is the same or similar to type 2 diabetes..when in fact only about 5% of all people who have diabetes have type 1...

Okay, I have to run to the pharmacy to pick up a special order of a new gauge of lancets..they are much smaller and we tried it yesterday and it didn't hurt Mikayla as badly as the other ones we were using...

I'll keep you all updated, thanks a million for all your advice and support!!

~Missy
 

Sorry- I know you need to need to have confidence in the people who are helping you, and I know the information overload is overwhelming. Congratulations on the compliment!

I tried to e-mail your sister so we could get this off Lymenet, but couldn't get through...Sounds like you feel comfortable with the help and advice you are getting so I would love to talk once you get past this first month.

I think your sister has my e-mail (my real name is Pamela)...if not I will violate my own policy and put it on here.

The combination of Lyme and diabetes will eventually be an issue. Suzy, lymemomtoo and I all correspond, so feel free ...Right now you're doing an amazing job...I dont' really want to say welcome to this small, select club (dealing with this combo), because it's not a good thing...but welcome anyway!

[This message has been edited by Lyddie (edited 17 May 2005).]
 

Thinking back, I remember that she had a severe spell of vomiting. It lasted for a couple of months..off and on..No one ever diagnosed it but her Endocrinologist said it had to be RSV...NOw that you mention the cycling vomiting, I wonder if it may also have been related in some way to diabetes.. NO other children at school or nearby had any such symptoms.

I agree that lows will happen and from our experience, they are only dangerous if you do not treat them. But it really freaks out the school nurse..I remember a low once from gym class.

She had been accidentally hit in the face by a badminton racket..The nurse called me about a low and I was more worried about her face. But I also knew that the nurse had given her crackers, etc.

But the school will use the threat of lows as justification to not let the children keep their meter and insulin on them..My daughter has had major problems with this..She will often have a high just because she doesn't want to miss instruction to go to the nurse..A big school so a lot of time to go and come from the nurses office and a minimum of 10 minutes missed.

When my daughters lyme symptoms are not causing psych problems, she is in fairly good control. But currently blood sugars are off.

I think the pump would be an asset but the endocrinologist will not consider it until she is in better control and the psych issues are better..This may be a timely thing since she is 18 and college is not in the near future..So there is a potential insurance problem.

She has been taught to cover all carbs with the 12 to 1 for insulin..But the mind must be clear to do this. And the OCD problems cause her to not let me handle any of her diabetic needs. And it isn't for lack of trying..

But with an 18 year old with suicide depression, I loose all battles. Actually am chastised by the psychiatrist for forcing any issues but then am also chastised for letting my daughter manipulate us. No wins here but hopefully time will bring some cures..

Good luck and prayers to all. lymemomtooo

 

If low blood sugars are present it's better to have them have juice or glucose tabs to bring up the level quickly rather than crackers or carbs...carbs will actually bind wiht the sugars and slow down the rate that the blood sugar will rise. So if you eat crackers and have some juice and retest in 15 minutes you're going to find that a blood sugar that was at 50 might have only raised to a level of 60 or so because of hte carbs 'slowing' down the rate of absorbtion of the juice sugars....if you just drink juice and have some glucose tabs WITHOUT carbs then the blood sugar will rise from 50 to about 110 or so in a 15 minute time period usually, the child's shakiness or feeling weak will go away..THEN getting some carbs into them is a good idea to maintain the blood sugar level....

I hope all htat made sense..this is how I maintain all my kids here at school and it's worked well for years. THis is based on their physicians's medical management plans...their all alittle different based on each child, but this is the general 'gist' of them.

keep up the good work missy, you're doing great!!

Lisa
 

I haven't been around here in months but I came on today just to check in and have been reading this post for at least half an hour and crying for you and your princess.

I was dx with type 1 diabetes at age 13 and now I'm 22. I didn't know I had Lyme until 7 months ago but I'm pretty sure I've had Lyme since I was about four years old.

I also believe that Lyme contributed to the autoimmune response involved in diabetes.

Anyway, my heart goes out to you and your little Mikayla. The first few weeks are so tough but you will get through.

It sounds like you have a great medical team behind you. They are good to teach you the basics and then you can deal with the more complex issues.

The first week there were three or four things that I knew how to count and cover with insulin so that was all I ate.

Slowly, I learned how to count more foods and how each would affect my blood sugars.

Just know that you are not alone and that things will get easier.

But until they do, also know that it is okay to cry and to ask for help and to be angry. Let Mikayla know that it is tough for both of you but that she doesn't have to be strong for you. (That is not a job for a six year old.)

As far as practical tips, I can offer these hints. They are in no particular order and you may take them or leave them.

-Try a few flavors of glucose tabs and find a favorite. I like rasberry but there are grape, orange, and a few others as well.

-Get a special bag for all of the diabetes supplies and let Mikayla decorate it. It is just a small way to make it less sterile and foreign.

MEDport and DIA-PAK both make bags designed just for carrying diabetes supplies.

-Give her choices whenever possible. Which finger does she want poked? Graham crackers or Ritz crackers? Shot in the arm or the tummy?

-Find out how comfortable she is with sharing about her diabetes. If she doesn't want the "whole world" to know, find a quiet or out of the way spot to test her sugar and give her shot. If she wants to show off her bravery, then let her.

-Try to have everything ready before you call her away from what she is doing to test. Have the meter on, strip in, poker cocked and ready. That way she doesn't have to wait and watch in anticipation. Same for shots.

-Make baggies of snacks that are already counted out. 15 teddy grahams, 7 Ritz crackers, or whatever she likes to eat. And/Or write the number of pieces per "carb" in thick black marker on the box. Remember that the printed serving size usually doesn't have 15g of carbohydrate in it.

-Take care of yourself! Ask for help with groceries, laundry, etc. Steal a nap if you can. Take a bath. You can't keep your kids healthy if you aren't healthy.

Well, that's all I can think of at the moment but if I get any more ideas, I'll let you know. I am also availible by email and Then we could swap phone numbers too.
 

I just returned from a week in Washington and was shocked to read your post. Truly, my heart goes out to you and Mikayla.

I am a type two diabetic and right now I have one suggestion that was over looked when I was first diagnosed five years ago.

The diabetic educator/nurses may have mentioned this, but if not this is important to know regarding glucose test strips. The test strips need to be kept below 86 degrees and not stored in the refridgerator (check the vial package instructions.) Also, use the test strips within three months of opening the test strip vial. Thus, it might be a good idea to work off of one vial until that vial is empty. Also, test strips are very sensitive to light and heat exposure. Thus, it is important also to close the lid to the vial once you have removed a test strip.

When I need to test and am not at home, I leave my meter in the car but carry the test vial or vials in my purse. This way the vial or vials will not be left in a car that is too hot.

It seems like you and Mikayla are in good hands. I commend you on the fantastic job you are doing working with the professionals in learning how to meet Mikayla's new needs. Compliancy is most important in managing diabetes. Be sure to get enough rest and know that it will get easier over time as the whole family adjusts. I will keep you all in my thoughts and prayers.

Debbie - RI
 

We were lucky, originally this was proposed by the area supervisor at the Dept. of Public Health. This person told me that if we did it that way, there would be a whole class (75 kids) raised with my daughter's diabetes, who would be matter-of-fact about it and helpful if, say she ever got "too pale" on the soccer field.

This is pretty much how it has gone. Kids
love any new gadget like meter or pump, and when a softball hit her hand, the other kids tested her blood for her! It's all just part of normal life for them all.

With the school, the idea was that according to the law, she should not miss any classtime, and going to the nurses' office for care would impact her education (my daughter tested a lot when younger).

As a result, an aide or extra nurse was usually hired to care for the two kids with diabetes, Now, of course, she takes care of herself and this is no longer necessary.

Before kindergarten, the school went to town meeting and asked for extra money to hire a part-time extra nurse. Their argument to the town was that it would cost more money to send them out to another school.

Massachusetts recently passed a law that says kids with diabetes can do their tests and shots in the classroom. There have been cases through Section 504 (Office of Civil Rights, Fed. Dept. of Education) where this has been established as well.

Of course, this is a matter of choice, but it has worked out well for our daughter and for her classmates.

The other thing is that the school needs to make sure staff members are trained in glucagon for rescue, and although a lot of us parents always go on field trips, you are not obligated to do this and a nurse should be provided.

The American Diabetes Association, as some of us have mentioned, has a great sample 504 and health care plan. Since it is now May, maybe you can reread any posts about school over the summer, once blood sugars have stabilized and you have a spare minute.

Hi Everyone,

You guys are awesome... I can never thank you enough for all your encouragement, support, advice and prayers...

I have been crying most of the day..

Today is my birthday and Mikayla and I decided to celebrate by having a picnic lunch and then a trip to see Grammy and Grandpa in the woods ( what she calls my dad and step mom)

Things were going fairly well and then out of the blue Mikayla became very fussy, and agitated. Then when I suggested she have a snack as I was told to do this if her moods changed, she became very aggressive and she actually hurt my wrist by pulling on my hand.

I was shocked. So was my dad....Mikayla is a sweetie. She was elected the class friend and is getting the citizenship award..she is truly a sweet little girl...

Of course she has her moments, she is a redhead afterall but nothing remotely like this.

I took her blood sugar and it was 428..about the same as it always is that time of day. So I gave her a snack and literally within 5 mins she was back to her old self.

I called the doctor and his nurse said that it was because her sugar level is off.... and that kids often behave differently when this happens..

Yikes, just when I think I'm getting it, something like this happens. And now Mikayla feels badly that she hurt my wrist. She truly doesn't even remember tugging on it...now that is scary!

She had eaten about 1 hour and 45 mins before this happened, and I give her a snack every 2 - 2 and 1/2 hours, so I'm not sure what happened.

The nurse said that while she is in this is honeymoon stage it is going to be difficult and every day will bring its own challenges.

If I could have anything for my birthday it would be that this would all just go away..I know that isn't going to happen, so I'll wish that her sugar levels will stabilize so we can manage it and she can lead a somewhat "normal" life.

I am feeling so overwhelmed... Heck, I'm crying as I write this..it seems like that's all I have been doing today...Please tell me that the nurse is right and this will get better once her sugar levels stabilize...it is so difficult seeing her like this

Well I have to get going. My husband and I had reservations at my favorite restaurant tonight, but as it's an hour away, we cancelled it.

My sister and husband insisted that I take a break, so I am dropping the kids off at my sisters and going out to eat at a restaurant about 4 mins from their house.

I am so nervous about even being away from her that Long!!! But I will give her the insulin and dinner before I leave and have a bag all packed with snacks, glucose tabs, juice, insulin, all the doctors numbers, the test kit and of course her diabetic teddy bear..

And I plan on eating with my cell phone in my hand!!!.. I'm not kidding...I know I'm probably over reacting, but I will never forget the image of her in diabetic/insulin shock last Friday..I see it every time I close my eyes!

Well I have to get going, my husband and kids are waiting for me.. I have to put on a happy face and celebrate my birthday with the kids. Mikayla even made me a special present so I wouldn't be so sad..here she is 6 years old, being pricked so much she looks like a pin cushion and getting shots twice a day and she is worried about me...she is amazing!

thanks again for everything and I promise I'll email you all when I have more strength and time!

God Bless,
~Missy
 

quote:

---

Originally posted by Lyddie:
Lymebrat, how's Mikayla and how're you doing?You are probably too busy to check in so I am bopping this up for now. Is Mikayla coming down and feeling better?

---

Lyddie,
could you edit this out? [the boxes] I think that's what is making the screen too wide. I'm having trouble reading it, as I'm sure others are.
Thanks!
How'd you do that anyway??!

PAGE 2 IS HARD TO READ BECAUSE OF THIS
------------------
oops!
Lymetutu

[This message has been edited by Lymetoo (edited 18 May 2005).]

[This message has been edited by Lymetoo (edited 18 May 2005).]
 

------------------
oops!
Lymetutu
 

also, federally, it's still a law that only nurses can inject a child with glucagon sticks for very low blood sugar. THe ADA is trying to change htis, however, every year the nurses have fought it and it has failed legislation and htere is a reason we have fought it. THere could be many reasons htat a child goes into a coma, and only a licensed nurse can fully asssess a child and make sure it's because of low blood sugar and that hte glucagon NEEDS to be given or it can really injure a child. For instance , one of my diabetic s is also a seizure child, and can become unconscious from seizures, if someone gave her glucagon without testing her and boostedher bloodsugar more it could really be a problem. If an untrained person who cannot fully assesss a child gives the glucagon it can cause disastrouse results.....some children go into a coma if their blood sugr is too high, and you've just boosted thier blood sugar alot...

so we nurses have fought to keep it so nurses alone can assess a child to give the glucagon, that's why nurses always are supposed to be in a school building if there is a diabetic child on premises...I"m never allowed to leave the building...

the only other person who knows thier own child and who could test them quickly enough to know whethr to give hte glucogon sitck etc would be the parent at home ...plus they know thieir child better than anyone....

so if a school is presently allowing any staff memeber to inject 'in case' a glucagon stick they are going against federal regaulations of the Nursing regulations for diabetic children. THe bill jjust once again went before legisltion this past month and failed again....

IT IS THERE FOR THE SAFETY OF THE CHILDREN. THEY NEED TO ALWAYS BE PROPERLY ASSESSED IF HTEY SHOULD FALL INTO A COMA..NOT JUST GIVEN AN INJECTION...

just some inportant info from a nurse that deals with many diabetics every day...they're like my babies and I watch over them very carefully....

Lisa

[This message has been edited by lla2 (edited 18 May 2005).]
 

Glucagon regulations are a big problem. EMT's cannot administer it, so if a child with diabetes stays after school for sports or for a play, technically, the school nurse should be there- for ALL school-related activities, so that someone is there to do glucagon. This is at any age, not just younger children,

Most schools can't afford this. ADA is trying to pass legislation on this, to allow aides or teachers to do it. I have had public meetings with selectmen and with our regional Emergency Medical director to try to get the EMT issue resolved. basically, NOONE will do it ...

School nurses aren't allowed to train staff to do glucagon,either,so our school (wink, wink) had me train coaches and teachers
and wrote me a letter of thanks, to prove they hadn't!

Glucagon is not going to cause a coma from a high. It takes a few hours for that to happen. It really can't do any harm. Besides, the protocol calls for a blood test first.

Another great issue is that school nurses aren't allowed to make insulin decisions, They need a doctor's order. This doesn't work at all with "tight control." The very essence of tight control is adjustment of insulin. Endocrinologists would never be able to take that many phone calls. So our
school gave my daughter a cell phone and if she needs an insulin adjustment or a shot at all (she's on the pump), she has to call me and then I tell her what to do. Again, they allow me to do it to avoid doing it themselves. The whole situation w/DPH regulations is a big problem.

What I am saying is that in our town, the solution to every regulatory problem has been to rely on the parent, which makes it awfully hard on us parents (not to mention family incoome). There are years when the nurses have called me every single hour of the school day.

The new Massachusetts law actually allows kids to take care of themselves. I personally don't agree with this. it's an easy way out for everyone who is dealing with regulations, but not safe for a kid under 12. I think this law will mean schools will be even less responsible for kdis with diabetes,and they won't fund nurses to help the kids because, after all, it's now legal for the kids to do it themselves. End of liability for the schools, so end of funding.

[This message has been edited by Lyddie (edited 18 May 2005).]

[This message has been edited by Lyddie (edited 18 May 2005).]
 

My daughter went crazy when she ate a bagel in the early weeks. When her blood sugars fluctuated (and I mean between 40 and 300, which is normal at first) she was not herself and was "emotionally labile."

I forget if I wrote this before, but this is the reason we did tight control, not just to avoid complications.

I told the MD that the hardest part of the new-onset diabetes back then wasn't the shots or the tests or the getting up all night, it was that my daughter was not herself . More stable blood sugars took care of this.

So what you are experiencing (with Mikayla acting different) is common and will get better. Hang in there!

[This message has been edited by Lyddie (edited 18 May 2005).]
 

The RI nursing Association is in favor of the bill, as long as the Dr., nurse and parent are in agreement that the child is able to handle the testing in the classroom and is safe in doing so. In other words, can count his own carbs, handle drawing up his own injections, or bolus' if on pumps etc.handle blood bourne pathogens etc...

but currently, there is no bill in RI that supports a child testing in the classrooom. The federal government backs 'any state that decides to allow for testing for any child, however has left it up to the individual states, and then the individual school systems to make up their own regulations regarding the allowance of glucose monitoring in the classroom.'

THis is why I said, just check with your own state. Some states have passed the regulation already, some have not. If Ri"s passes in June, which it should, then all schools can have a policy in place by Sept. 1, 2005 for their Diabetic children.

As a school nurse in our district we have very strict medical management plans from our endocronolgist's on each of my diabetics children that tells me what to do in every situation for each 20 pt over or under their blood sugar may be etc..or how to administer their insulin depending how many carbs they eat etc...the management plan tells me also when to administer glucose tabs and juice , and when to have them test for ketones, as well as drink water if their over a certain level. These plans are very specific so that we have no contact with the parents at all during the day, we just follow their medical management plan...even the kids on the pumps, (changing out the sites etc. if the resoivoior goes dry, or the alarm won't stop going off etc..) we follow their plans also. We have all their drs on call if we have any questions, and of course have the option to call the parent if we have any problems, but usually since the medical managment plan is so precise we can follow it every day , for every situation and hve no problems. If we have a serious prblem of course we do call the parent.

THis system has worked great for us for years. We have Joslin clinic formulate hte plans for us,so they're excellent for each child. THey are written into our kids 504 plans so the parents are very happy with the plans.

Lisa

Lisa

[This message has been edited by lla2 (edited 18 May 2005).]

[This message has been edited by lla2 (edited 18 May 2005).]
 

quote:

---

Originally posted by lymebrat:

Hi Everyone,

You guys are awesome... I can never thank you enough for all your encouragement, support, advice and prayers...

I have been crying most of the day..

Today is my birthday and Mikayla and I decided to celebrate by having a picnic lunch and then a trip to see Grammy and Grandpa in the woods ( what she calls my dad and step mom)

Things were going fairly well and then out of the blue Mikayla became very fussy, and agitated. Then when I suggested she have a snack as I was told to do this if her moods changed, she became very aggressive and she actually hurt my wrist by pulling on my hand.

I was shocked. So was my dad....Mikayla is a sweetie. She was elected the class friend and is getting the citizenship award..she is truly a sweet little girl...

Of course she has her moments, she is a redhead afterall but nothing remotely like this.

I took her blood sugar and it was 428..about the same as it always is that time of day. So I gave her a snack and literally within 5 mins she was back to her old self.

I called the doctor and his nurse said that it was because her sugar level is off.... and that kids often behave differently when this happens..

Yikes, just when I think I'm getting it, something like this happens. And now Mikayla feels badly that she hurt my wrist. She truly doesn't even remember tugging on it...now that is scary!

She had eaten about 1 hour and 45 mins before this happened, and I give her a snack every 2 - 2 and 1/2 hours, so I'm not sure what happened.

The nurse said that while she is in this is honeymoon stage it is going to be difficult and every day will bring its own challenges.

If I could have anything for my birthday it would be that this would all just go away..I know that isn't going to happen, so I'll wish that her sugar levels will stabilize so we can manage it and she can lead a somewhat "normal" life.

I am feeling so overwhelmed... Heck, I'm crying as I write this..it seems like that's all I have been doing today...Please tell me that the nurse is right and this will get better once her sugar levels stabilize...it is so difficult seeing her like this

Well I have to get going. My husband and I had reservations at my favorite restaurant tonight, but as it's an hour away, we cancelled it.

My sister and husband insisted that I take a break, so I am dropping the kids off at my sisters and going out to eat at a restaurant about 4 mins from their house.

I am so nervous about even being away from her that Long!!! But I will give her the insulin and dinner before I leave and have a bag all packed with snacks, glucose tabs, juice, insulin, all the doctors numbers, the test kit and of course her diabetic teddy bear..

And I plan on eating with my cell phone in my hand!!!.. I'm not kidding...I know I'm probably over reacting, but I will never forget the image of her in diabetic/insulin shock last Friday..I see it every time I close my eyes!

Well I have to get going, my husband and kids are waiting for me.. I have to put on a happy face and celebrate my birthday with the kids. Mikayla even made me a special present so I wouldn't be so sad..here she is 6 years old, being pricked so much she looks like a pin cushion and getting shots twice a day and she is worried about me...she is amazing!

thanks again for everything and I promise I'll email you all when I have more strength and time!

God Bless,
~Missy

---

Tight control requires frequent tests and adjustments which should be supervised or done by a nurse, where the kid is, so that the child doesn't miss out on learning. If laws change and allow aides to do this, it will certainly be much better for nurses.

The kids in your school may have much higher HgA1C's. My daughter's doctor is very aggressive, does not support rigid guidelines for care, supports flexible judgements, and my daughter's HgA1C is in the 5's.

Insulin doses vary tremendously depending on exercise in the last 24 hours, having a cold, what you eat, whether you have a headache, etc.etc.
Furthermore, one kid will take 4 units for a given blood sugar and another will take 1.

Throw in Lyme disease, antibiotics, Plaquenil, SSRI's whatever Lyme kids end up dealing with IN our case pneumonias, sinus infections, surgeries, head pain, kidney inflammation,yeast infections, you name it) and you have a blood sugar picture that is not too consistent.

We need someone at school who will THINK about it, not just follow formulaic orders. Nurses can't/don't do this.

We get along great with our school nurses, principal and teachers because I have just done whatever most helped my daughter's health, which is to handle the diabetes 24 hours a day for years (at this point she does most of it herself, since she is 15). My pleasant availability has relieved them of many problems, including regulations- but there should be a better way.

[This message has been edited by Lyddie (edited 18 May 2005).]
 

My sister and her husband met us at the restaurant and I ended up having a good time..I did however call my sister to check in on Mikayla 3 times in 1 hour..

I have to take Mikayla in to the diabetes clinic tomorrow and we are going to discuss her highs and lows and what to do when she has these mood changes.

Mikayla is very upset that she unintentionally hurt my wrist..I keep telling her that I'm fine, but she is such a loving little girl that it bothering her..so I'm hoping the doctor and nurses can explain what happened better than I can.

Someone asked about how she could be in a honeymoon period with 400 numbers... I'm not sure, but that is definitely what they are calling it.

Her numbers go from 298 to "Hi", which means it is higher than the meter will read which I think is 600.

Her doctor told me not to worry about the high numbers as she was already over 1000 and that with the insulin shots, she should not go much higher than 600.

And that although 600 is very high, her body considers it low compared to the 1000 or above she has had for who knows how long.

SO for now, I am suppose to be concentrating on lows..even 300 is a low for her as her body "thinks" the level is dropping, as it has been running on over 1000 level.

So when she gets dizzy, shaky, fussy, yawning all the time, etc, I am suppose to treat it like a low and give her a snack.

So far this has been working well. If I notice any of these signs, I give her a snack and within 10 - 15 mins she is fine.

I'm not real up on all the terms yet, I am just taking it one day at a time and trusting my instincts.

I have been reading everything I can get my hands on and find the juvenile diabetes web site to be very helpful.

You have all been a great deal of help as well.

I'm not certain what will happen at school yet and will cross that bridge when I get to it..I am on over load and can only take this one day at a time, otherwise I would be too overwhelmed and feel more inadequate than I already do.

I do know that Mikayla's diabetes doctor has talked to the school nurse as she told me that they were working on a 504 health plan.

We live in a small community with our own elementary and high schools. There is a head nurse if you will who oversees both schools, she is very informed about diabetes..

we also have 2 other full time nurses at the elementary school level as well, who are fully trained in diabetes.

The nurse has called me several times at home to check in on Mikayla and informed me that they will make this as easy on Mikayla as they can.

They are going to test her twice a day, and the doctor has given me everything I need to send into the school with her.

They even asked me if I wanted them to hire a tutor for Mikayla until she can get back to school...

Mikayla loves school and at this time her teacher is sending home work with her brother that she "can" do if she wants. Mikayla loves having homework and when she is able, she does her work and sends it in with Derek the next day.

So far it seems like the school and school nurses are being wonderful to us and they truly care about Mikayla... and thankfully I don't foresee any troubles with sending Mikayla to school and feeling certain that she will get great care in their hands.

But I will be sure to come here and seek help if I run into any troubles..

Well thanks again..I think I'm going to try to get some sleep. I haven't slept in days. I think all the crying I did today has taken it's toll and my body is telling me to get some rest.

I'll let you all know what the doc says tomorrow at the clinic..

~Missy
 

I would not want my child anywhere near another child's blood.
 

In reference to your episode with Mikalya's uncharacteristic mood swing, I'm afraid you will see emotional levels swing in correspondence to changes in blood glucose levels. Highs and lows both bring on episodes of agitation and irritation with our son and with other diabetics we know.
Tighter contol can help this. We haven't been as successful with tight control during the teen years, but hopefully if you establish good habits while she is young, it will carry over. I know this will sound sexist and I apologize to any male readers, but anecdotally, it seems like girls tend to be more successful in keeping tight control during those teen years, but you have a long time until you have to worry about that anyway.

Have you gotten a medic alert ID bracelet or necklace yet? Very important. Our son quit wearing his, but at least he carries a card in his wallet and his pump is fairly visible. There are some cute styles available now- woven, available in different colors. They look like what we used to call friendship bracelets. Look in the back of some of the diabetes magazines and you will see ads for them.

Also, make sure your doctor gives you a prescription for an extra glucagon emergency kit for school and if Mikayla goes to any type of day care or other program after school, make sure they have one there as well and that someone has been instructed how to use it. Our son is leaving in the morning for a 5 day school trip and he is taking one, but I am nervous because no one has any experience with using one. Of course, I don't either, since the situation has fortunately never arisen, but at least I have an understanding of what to do.

My heart goes out to you and Mikalya. Reading your posts brings back alot of familiar feelings. I remember how difficult those first few months were. It feels like you have to be your own doctor in a way - there are so many decisions to make every day - how many carbs, how much insulin, how will exercise effect current blood sugar, changes in blood sugar caused by illness or stress, how to handle school, family and friends, social events. . . the list goes on and on. But as I said in my previous post, it really will become second nature in time.

The first year, I kept a detailed diary of every bite of food he ate, his insulin doses, glucose, etc. Eventually, I learned how to count carbs (I wasn't taught this in the beginning, believe it or not) and just kept it on his glucose chart, but I was really obsessive in the beginning. I also didn't want to let him out of my sight, but I eventually loosened up there too. And, it is normal to react with grief. I lost 30 pounds myself in the first month and spent portions of each day in tears. The stress is phenomenal, but I can tell you & Mikayla are both strong and are hanging in there. Every day I wish I had a magic wand that I could wave that would take away these diseases from our children. I've made your birthday wish a number of times myself and both of my children know that if I could, I would gladly take their diseases for them, unfortunately it just doesn't work that way. We just have to be there for them to support them and to make sure they get the best medical care possible.

Well, enough rambling. Wishing you and Mikala all the best and hoping your journey into this frightening new world soon becomes easier.
Try to take care of yourself during this time too.

Suzy
 

From our point of view, this is a civil rights issue. The blood involved is a tiny drop, which is absorbed and neutralized by a swab. A kid with a band-aid is more of a threat. (And my kid doesn't have AIDS either. This hysteria about blood comes form the AIDS crisis).

Going to the nurses' office every couple of hours to test would affect my kid's equal access to eduation.

This is like saying you don't want a kid with Lyme in the pool with you because you might catch Lyme!

[This message has been edited by Lyddie (edited 20 May 2005).]
 

quote:

---

Originally posted by Lymetoo:
[b]Lyddie,
could you edit this out? [the boxes] I think that's what is making the screen too wide. I'm having trouble reading it, as I'm sure others are.
Thanks!
How'd you do that anyway??!

PAGE 2 IS HARD TO READ BECAUSE OF THIS[/B]

---

Oh well

 

You are doing great! It sounds like you have a wonderful team supporting/educating you and Mikayla.

After you read through these posts you might want to print all of them out so you can refer to it later, I think in our desire to share with you, help and encourage you, that you may get overwhelmed thinking you have to learn everything all at once, some of our situations you won't experience for awhile, and just look how much you have learned this past week.

Our Dr. told Amber that she and I would end up being the experts on her diabetes.

Trust yourself Mommy, remember This too shall pass. Soon it won't be so upsetting.

God Bless
Cindy ><>

------------------

 

I'm surprised that your school system's nurses aren't in charge of this...we are told we must be totally current.
we have meeeting with parents and physicians monthly to update 504's and send home daily logs with info...it's quite an undertaking..but it's part of my job to keep up with their needs...I have 4 very brittle diabetics, adn they are very time consumsing to manage...but they are sweethearts, and I love they aare part of my day everyday...

Lisa
 

Ila2: Your attitude is certainly different from our nurses, and would perhaps be most welcome by us parents here. But if regulations prohibit nurses from making certain decisions (insulin dosing) I can't imagine how it would work. As I said, for us, esp. w/Lyme causing variability, insulin doses change all the time. All kids w/type 1 are "brittle," but much less so with very frequent testing and fine-tuning insulin doses for how they are "running" that day.

This is enough for poor lymebrat. I apologize! A DPH official suggested a long time ago that my child test i the classroom nad supported the school funding nurses to got to the child every couple of hours. This made a tremendous difference in my child's life and health, and I just wanted to pass it on as a choice that can be made down the road.

[This message has been edited by Lyddie (edited 19 May 2005).]

[This message has been edited by Lyddie (edited 19 May 2005).]
 

again, missy, anything I can do to help you just let me know, happy to help.
Lisa
 

I came across the following article this morning and thought you and your husband might find it helpful: "Diabetes Care in the School and Day Care Setting" published by The American Diabetes Association in 2005. This article can be found at:
http://care.diabetesjournals.org/cgi/content/full/28/suppl_1/s43

If you do find this article useful, it might be a good idea to print it out now for future reference and review it when things seems less hectic and overwhelming.

Wishing you and Mikayla a better day. Hang in there, you are doing great!

Debbie - RI
 

Extra wide screen is extremely hard on us late-stage lymies since we can't scroll back & forth & be able to comprehend anything.

Yes, please edit the post Tutu referred to for all of our benefit....thanks so much.

bettyg
 

If I knew how, I would fix it in a second. I'll ask my teenage son, when I see him (not too often). Thanks for your patience.

I have neuro Lyme too and can't stand extra-wide posts, but I also have trouble with my fingers and might have done something by mistake.
 

IN fact we use their medical managament plan to send to our endocronologists for each individual diabetic child to be filled out , because they are so specific....

great article.

Lisa
 

I thought this article might be a "keeper." The ADA is a great resource for both the professional and the lay person.

When I taught in the RI public school system, I never knew what guidelines school nurses followed in their care of diabetic students. Your update regarding this issue has been enlightning....thank you.

Debbie - RI
 

thanks ..and hope things are going well missy

continuing to keep you guys in my prayers...

Lisa
 

This plan mentions federal 504 law and the requirement that diabetes care be done in such a way that the child's education is not impacted.

The plan provided on this link also has an entire section with a bold heading "testing in the classroom." The most important component of ensuring that education is not impcted, is allowing testing wherever the child is, usually in the classroom.

Lisa, when you are working on the federal regulations, if the comittee abides by the two principles that lay people can do some care, including glucagon, and that every child can test in the classroom, it will be very helpful.

Federal law supercedes state regulations in every case. Right now, there are court cases that have been won in certain states, and others are guaranteeing some of these rights just by using the logical argument that they ensure equal access to education, but as yet the right to care in this manner is not codified this specifically in any federal law.

The ADA plan is great, but it is not necessarily legal or allowed by regulations, so there is a gap between their suggestion and reality!!

Tight control has changed everything. I have an excellent article on this subject, written for school nurses, and will post it if I can find it. My family has had to trailblaze, frankly, and it has not been
easy.

I have also been told by OCR that the "reasonable accomodations" language does not apply to primary and secondary schools. Since they are compulsive, the standard for accomodations is higher.

Finally, Lisa, I still maintain that it is a problem that nurses cannot make judgements about insulin doses. Tight control requires insulin adjustments that can't always be covered by algorithms and ranges provided by the physician. I've already described the solution of our school: that I, the parent, do insulin dosing by phone.

Ph-and how does yoru school hadnle a kids with diabetes who stays until 7:00 after school rehearsing a paly? Or a kid who gets on a bus and goes to a soccer game 40 miles away? Does your school pay for a nurse for these things so that ONLY a nurse does glucagon? There needs to be a solution to this so that schools' budgets don't suffer. The nurses in our school have kids nd can't go anyway. The solution we have is currently illegal in the state, but, it could be argued, is legal because it guarantees equal access: lay people like coaches and play directors are trained by me (the nurse is not allowed by DPH to train them)to do glucagon, and no nurse is present after school.

Dont' forget, EMT's can't do glucagon by regulations in all states except Wisconsin, so, without a nurse or an AMT, how can these kids be safe if they go into seizure from a low? The ADA solution of laypeople needs to become a reality for us.

[This message has been edited by Lyddie (edited 20 May 2005).]
 

It is amazing to me that no parent has brought up the exposure to blood products.

Just a few weeks ago, a child ran around with an insulin syringe (from their diabetic mother) in a school and infected at least one child with HIV.

Blood products should be in a biohazard bag. What do you think these bags are for?? Blood products are dangerous. I dont care if it is HIV or not.

And not every child wants to test in the room. Some children would rather not everyone know their personal business. I come from a family of Type I's and they all went to the clinic. And none of them felt their civil rights were violated because of it.

And it is NOT the same thing as Lyme disease.

[This message has been edited by Kara Tyson (edited 20 May 2005).]
 

for example give 1 unit of insulin for range of 200-220, 2 units for range of 221-240 etc...we only correct by following directions in this very strict medical managemnt plan that is in place for each child. And each child's is different of course. OR give water for over a certain amount, or so many grams of carbs for over a certain blood sugar etc..wait 15 minutes adn test again. test ketones over 250, if med to large call dr., if less, push water. what to do for symtpoms of hypo or hyperglycemia etc...they are so specific I have to check them for each child every single time they come into my clinic...I could never remember them. But these chldren are under my complete care when parents drop them off every day. THey are my sole responsibility, so I had better know what I'm doing. If i have a quetiion the dr. is always available. This is how it works in my school system, and like I said, we are very well known in our state for our leadership in this area..it works very well.

also, only a school nurse in ri can give glucagon currently. THat is regulated rightnow that way.

If a child is to attend field trips or after shcool activities a parent or a nurse must be present. THat is in their 504 or IEP..that is mandated by our state regs also.l.

most of what your asking about is mandated by state laws. Ithink federal sets up guidelines and then the states have to set up what they want state by state for their particular one...

with regards to testing in the classroom, our bill should be passed this June adn in place in all schools by August 31st of this year. However, it is written into the regulation that the dr, parent AND school nurse all must feel that the child is SAFE to do his own testing away from teh clinic. For example I have a child that can't count hteir own carbs at lunch adn add up their own need for how much insulin they need, so I don't feel he is safe yet to self test and administer insulin awway from the clinic yet...we're still working on it. ONce this was explained to the parent, and they understood it was for HIS safety I was doing this, they understood and agreed. The nurses just want to keep your children safe.

I agree about the needls, adn blood bourne pathagens, but the ADA has stated that its not enought blood to be concerned with so we can't fight that fight..and the needles, have to be fought state by state. THere was an incidnet recently in nj, where a child stuck 17 children with his mother's diabetic needle which was tainted with hiv blood, now all 17 children have to be worried about that....
\
it's a whole nother can of worms that the ADA doesn't seem to want to worry about..trust me, at least the nurses in my state, really want to keep testing in our clinics if we could . It means more work, but we feel it's safer for our kids.

LIsa

[This message has been edited by lla2 (edited 20 May 2005).]
 

Don't forget, it was a state Dept. of Health nurse supervisor who suggested this to our school in the first place! Obviously, it is done properly. You seem to picture blood all over the place or something...the drop is the size of three periods put together(...).

Noone is saying that a child HAS to do this. It's a choice, and a right that has been established in various courts.

If a child is running around with a syringe, the child needs to be prosecuted, frankly, and the school would be liable I would think. Any child who behaves with this kind of disrespect for the safety of others would have to have some other plan, obviously.

For children with diabetes, it is just a matter-of-fact chore, like brushing teeth. To disapper constantly from class for diabetes tasks makes it mysterious and scary and shaming. It also forced the kids to miss out on lectures, tests and other academic activities. Our daughter particpates fully in everything, and the other kids are completley comfortable with everything she does, and have even helped her with it. The think her meter and pump are cool.

Your attitude is very offensive, frankly. A special needs aide at our school has been severely disciplined for telling a child (not mine) that his testing/shots "bothered" another child, and thereby suggesting it was offensive.

Get educated before you post something like this. Have you ever seen a blood glucose test performed with today's meters? A paper cut would produce 50 times more blood. Ban paper from the classroom!
 

I couldn't be more proactive or protective of our diabetics than anyone else..and Iknow what they go through everyday. I just want them to be safe, and if htey are testing because they feel low adn suddenly 'drop' or faint because they are too low I am WAYAY on the other side of hte building, and would much rather me right with me if htis occured. Ususaly their time with me inthe clinic takes only about 10 minutes and their parents make this decision to have them test with me , it's not my decision... they feel they are safer in case they drop too low.

I can see you wish for your child to be testing in the classroom. THat's obviosly what is working for your child, and obviosly you have a great plan in place in case your child drops low enoough to need glucagon etc..your school must be small enough for the nurse to get their quickly. mine isn't..I have over 1400 hundred kids, and it would take me about 15 minutes to get to a child on the other side of my building, so thats just for safety. we always have an aide come down to our clinic with every diabetic to test every time....

when i said that i wanted tested in the clinic it's because I like to see my kids and know what their tests results are and how they are feeling,rather than having htem 1/2 way across the building etc..it's certianly nothing shameles..? not sure where you got that from...

also the note about hte needle stick was in response the to the note above mine about the hiv needle, adn I htink that child is being prosecuted.

But please know that my diabetic kids are the kids closest to my heart...so hopefully you weren't talking to me about being a burden..

I hope this helps you understand how I feel. oh and between all my diabetics , yes i see the testing done about 50 times a day...

I won't be posting anymore, as this started as a conversation to help missy, and ohters are seeing me somehow as 'not helping diabetics at all'...
so missy, I'lll keep you both in my prayers...take care and email me if you need any help hon...

Lisa

thanks

Lisa

[This message has been edited by lla2 (edited 20 May 2005).]

[This message has been edited by lla2 (edited 20 May 2005).]
 

Lyddie is advocating for an aspect that is focused on the child with a disabilities rights to live, learn, and function within the school community at the highest possible level in conjunction with the best care medically.

That's what the Federal IDEA and 504 regulations protect.

The regulations are there, but there is often a big gap between school systems this being enacted in the day to day.

There point is to take all possible, safe alternative/supplemental measures so the child is medically supervised, yet thier lives in school are effected as minimally as possible.

If a child requires up to twelve tests a day at times, it seems prudent to consider acceptable alternatives to going to the nurses office every time.

Again, there is also a point to making sure they do not feel testing procedures are shameful or contagious, because they are not.
If they feel it's 'regular life'..then it becomes regular life, ans I imagine they would be apt to be monitored that much more efectively, consistantly.

My child doesn't have Diabetes, but I am working within federal regulations and laws that advocate for his right to live and thrive in the mainstream with his medical disability.

This is a struggle in reality, even with the laws in place.
You wouldn't believe all the little things that need to be negotiated, and should understand that the parent of a child with a disability has a tremendous job in making sure the child's sence of self and well-being is ensured despite certain needs.

Lisa, it sounds like you and your collegues are very mindful and careful medically with your diabetic children, and I commend that..
but I think it would only serve the children better holistically, if the issues advocated for children with disabilities were also given allot of weight, and flexibility in each case where approptiate and feasable would only help the children.

The other emphasis of 504 and IDEA Federal laws and regs is that each child's case is considered individually.

It just seems to me you all have the children at heart, therefore can really gain allot of insight from looking at this with their interests medically, socially, phsychologically and academically so thet may thrive in the community with diabetes.

I think exposing classmates to care is a
wonderful example of integrating students
with diabetes, as well as in many cases better for the child medically.

There are limitations to trecking to the nurse that many times, especially when they are older, kids may resist it.

It just seems flexibility wherever possible is very supportive all around.

I think that is where Lyddie is coming from as a parent of a child with Diabetes 1 and Lyme.

Mo

PS: I'm sure all this input could help Lymebrat later when she is up to this part of it. Hey LB..you ought to save this thread to hardrive maybe for future reference.

------------------

[This message has been edited by Mo (edited 20 May 2005).]
 

quote:

---

Originally posted by Lyddie:
Lymetoo:Sorry, I don't know what you mean about the boxes. There's nothing unusual on my screen.I would fix it if I could figure out what you are referring to. Could it be your computer?

---

Well, maybe it shows up as a link on your screen. That's OK. I just wanted to read the second page.

When the screen goes wide, it's usually a lengthy link.

On my computer it showed up as a row of boxes....very weird.

Thanks anyway!

------------------
oops!
Lymetutu
 

To Lisa, No, I was responding to the posts by Kara about the blood in the classroom. It had nothing to do with you.

Lisa, just fyi: In our school the nurses go to the classroom every hour. In other words, the nurses go to the child rather than the child to the nurse. The other child (not mine) is still on shots and is tested every hour, I believe. Lows are very rare this way.

The nurses tested my child and the other child when they were younger. My daughter would have her hand up to answer a question, while the nurse was testing her!

Since she is now 15, of course she is mostly self-sufficient, but the model of testing in the classroom that she has followed since age 4 now serves her well in the more academicaly demanding high school classes.

I am not a proponent AT ALL of kids being on their own, testing and treating and making judgements in the classromm without adult help. This needs to be staffed properly. I am actually NOT in favor of the Masachusetts bill that recently passed, for this reason. Kids need help- and that help should come to them, just as aides help others IN the classroom with special needs.

Our school is very, very good at inclusion and that's really what we are talking about here.

We are very considerate of everyone, and don't pound our fists on the table about rights or anything! We get along great with everyone, because they have been educated. The teachers and the other students learn a lot by having the testing in the room. It truly is a beautiful thing

Also, every year in Elementary School, I went in and talked with the class. By 5th grade, my daughter and several friends did most of the presentation. The nurse and I wrote a joint letter to parents as well. Each year in Middle and High School, the principal, nurse and I meet with all teachers. I write up complete information for them to read beforehand, about diabetes, development of self-care, emergencies etc.

Again, I only offered this program for lymebrat as a suggestion, in the same spirit that the DPH nurse offered it to me. It's a choice, and an increasingly popular one. It does cost schools some money for staffing.

I do not find any of your posts offensive, Lisa, and it is apparent that you are a caring and very competent nurse.

However, I do think the ADA plan which you praised contradicts some of the things you have posted, and is more in line with the plan we have had in our school. I am hoping that people like you can help bring the laws and regulations more in line with what actually needs to be done- so please read that plan carefully! The ADA's advocacy on behalf of lay people doing diabetes care is one example of changes that will help kids and school budgets!

Again, I think you seem to be doing a great job LIsa and I wish you had been in our town when my child was younger! Thanks for all your great work.

I hope that ymebrat can use this someday, lengthy as it is, and I agree with Lisa that we should all stop pretty son before this thread is 8 pages! I take responsibiltiy for the length of my posts and apologize to lymebrat if it is in any way not helpful to her and Mikayla. But learning shots and treating lows is easy compared to this other stuff!

[This message has been edited by Lyddie (edited 20 May 2005).]

[This message has been edited by Lyddie (edited 20 May 2005).]
 

first things first...I hope you all continue to post on This thread and I hope it does get to be 8 pages long..because you have no idea how much reading all your posts is helping me....

I am so frazzled right now I am simply not able to do a search and look up all the threads that might have type 1 diabetes information on it..

This way, it is all on 1 page..information, support, advice, articles, website..etc.. so myself and others who have a child with lyme disease and a new diagnoses of type 1 diabetes can find all this information on 1 thread.

I truly appreciate everyone's views, opinions, experiences etc...as something tells me that type 1 diabetes is similar to lyme in that no two children will have the same treatment for a cure..

I am so overwhelmed right now, that by coming here, I feel safe in a way. I know I am being surrounded by people who have been where I am today and take great comfort in sharing your experiences and knowing that every thing will be okay,.

So please, Lisa, Lyddie..everyone please continue to post here as I need you right now and someday when another mom hears that her child who has lyme also has type 1 diabetes to deal with, she can read this thread and find the type of safe haven I have thanks to ALL of you!!!

Thank you all so much!

~Missy
 

Hi everyone,

Well, a week ago today, I found out Mikayla had Type 1 Diabetes... so much has happened in that short amount of time..lives have changed and my little girl is now accepting the fact that her diabetes will not go away and that she will have it "forever and ever"

I am still crying everyday once she is napping or in bed for the night and wonder if I will ever stop.

I know in my heart that she will always have diabetes, yet I can't seem to stop myself from hoping every night when I close my eyes, that it will have all been a bad dream and when I wake up everything will be back to normal again.

Yet everyday, I wake up to the beeping of her meter when it is ready for the blood test and jars of insulin, needles, alcohol wipes, etc..

What a harsh reminder that my daughter's life has changed forever...

When will I stop crying for her??? I know you all have been through so much, and I'm sorry if I sound trivial or selfish......

I know someday I will come to terms with all of this, but right now I am still in my anger stage and I am frankly pissed off that this has happened to my little girl and that so many children have to suffer this...

I haven't slept in days as I am so scared I will wake up and she will have gone into insulin shock or something and I wasn't there for her...

I know it may seem foolish, but I can't help myself. I check her blood levels twice while she is sleeping just to make sure she is okay.

I have never felt so helpless or inadequate before. I can't stop thinking that there must have been some way for me to stop this from happening to her. I know in truth there wasn't, but I can't convince myself of it..

Is it normal for me to feel like this..guilty???

I am meeting with the diabetes educators, and nutritionist on Tuesday and I plan on asking them all of this...but for some reason I am embarrassed to discuss these feelings with strangers..

I have known all of you for years and you have all been there the past 2 years helping me with Derek and Mikayla's lyme, so I feel safe talking to all of you about all of this...

Last night around 8:00 Mikayla's checks were red ( they were red when she was diagnosed as well) and she was acting aggravated. her sugar level was 290 ( the lowest it has been since she was diagnosed) so I gave her a snack as the nurse told me to do...and 30 mins later it was up to 480.

It seems it goes from one extreme to another..

Does anyone know roughly how long it will take for her sugar levels to stabilize? Right now,... the past 3 days, it fluctuates between 290- 596.

It also seems like she is hungry all the time. She wants a snack or meal, every 2 hours. yet she isn't gaining weight. Her ketones are small, so I'm not suppose to worry about that..

Yet I worry about everything.

I am a strong person. I have dealt with many things in my life. Some things happened to me as a child...so awful, that the adult in me has blocked them from my mind. Not many things scare me, but I am scared to death right now...

Okay, Mikayla is waking up from her nap, I'll write more later..thanks again for letting me vent!!

God Bless,
Missy

I find with my students, their bs rises about 20-30 pts for every glucose tab they eat or every juice box they have in about 15-20 minutes or so...same with skittles (sometimes thats what the little kids use to help raise sugar etc...) that's how long it takes to raise it up...and they can raise very quickly.

like the nurse said she's in the honeymoon phase, which means you don't know yet what is NORMAL reactions towards food for your daughter..you don't know yet how she will respond to foods you give her...it will take some time to see a pattern. Write down everything she eats, what's in it, and how long it take s for her to see a rise in sugar and what it tests out to be. keep a diary for a while...take it into the docs..they'll check it out.it'll help the nutriitonist figure out a diet for her after she settles in...

you're doing great mom..the first month or so is the hardest and scariest..and you're right on top of htings..no ketones, means DON:T worry..no keto=genic shock like before..ok??? so don't' be scared of what she was like before...whenever she's over 300 test her ketones adn give her water, lots of it..it'll bring her blood sugars down..if her ketones are fine, take a deep breath, adn as hard as it is , relax a little, she's fine...ok????

we're right here if you need us..anytime...

Lisa
 

I can't read page 4 of this post..

So I am just posting to see if it will let me read this post..

~Missy

EDITING HERE...It Worked

[This message has been edited by lymebrat (edited 20 May 2005).]
 

Are you aware that there is a watch that she can wear at night that will alarm if her bloodsugar changes drastically? http://www.glucowatch.com/us/consumer/frame_set.asp

[This message has been edited by Kara Tyson (edited 20 May 2005).]
 

sounds like the long acting insulin just isn't holding her right now..they'll adjust this once you get togethr with her nutritionist and they see that she's eating all the right foods, that your doing everything right and she's still spiking...the insuling just isn't holding her, that's all..

you're doing a great job, plus making it fun!yeah mom!! they're right, just like i said, don't worry about hte highs, you can always keep her drinking water to bring them down if they do worry you. just keep checking her ketones.

after they see her diary,a dn her spikes, they'll readjust her insulin doses and she won't be spiking so much, so you ll be able to relax a little more...it'll just take some time to find the right doses for her body..all the foods sound great....

Yeah mom...you'[re doing a super job..dont'second guess yourself... you're following everyone's directions and doing everything they told you... if you get nervous about hte high numbers just give her some water and it'll come down for you...

you're so on top of it now it won't spike so high as it did in the beginning , so you can let go of that fear now..ok? she's safe and your taking wonderful care of her...the drs are a phone call away, and we're all right here to answer questions any time day or night...

when she's 'fuzzy and aggitated' it could be because she's high not low...do you check her bs before you give her a snack? sometimes it's hard to tell by these sysmpoms if hteir high or low bs wise....jsut curious? if you do, she may be hyperglycemic from those symmptoms also, and may need to be brought down by water instead of given a snack..just a thoguht..unless you were always told to give her a snack..just htinking htat may be why she is peaking later after the snack..water will bring down the aggitation etc...

keeping you in our prayers..
lisa

[This message has been edited by lla2 (edited 21 May 2005).]
 

I remember in the beginning that I was always running the bath so noone could hear me crying. Also, I had some psychic experiences too...meant to tell you that.

I also wanted to tell you that although I push strongly for my own child's tight control, at school and at home, that I do agree that different approaches may be better for others. We do tight control to avoid the awful complications of diabetes, Have you seen the Diabetes Control and Complications Trial? But we also do it because our child felt better, learned better, and was herself in every way, with tigher blood sugars.

On the other hand, my friend's child, a boy with ADD, who is on hs own around town at times, and quite active, is run higher for his safety. In the short term, somewhat higher blood sugars are better for his health.

I will say that you need to beware of doctors and nurses who want to run him high, so that he doesn't have lows. It is possible to have much lower average blood sugars in children than some of these medical people support, and you may need to find a doctor who is aggressive if you choose this path.

Every two or 3 hours spent with a blood sugar over 180 is hurting your child's health long-term. Then again, a lesser amount of time spent under 50 is also going to hurt your child. This is the dilemma of type 1 diabetes!

MIkayla does not sound like she is in a honeymoon, so I don't understand the use of that term. This term does not refer to everyone's post-diagnosis period. Not everyone has one, and sometimes it starts a little while after diagnosis. My daughter had a dramatic honeymoon in which she again had normal blood sugars, with a miniscule amount of insulin (we had to use a dilution). It was very sad, because it almost make me feel like the highs had been a dream, and that she didn't really have diabetes.But after a few weeks, the highs came back and obviously things have never been normal again. It's been 11 years now.

I also don't understand the dietary advice you are getting. Go online and look up the glycemic index. Emphasizing sugar is very outdated. The glycemic index gives a list of foods in order of their tendency to spike blood sugars. Foods such as white bread, white rice, potatoes, cereals, bagels, bananas and certain other fruits, all spike blood sugars much more than cookies, cake, or candy bars with sugar. This is because the latter contain fats. Fats and proteins slow sugar absorption down, so there is less of a spike.

If she has the faster-acting foods, try to serve them with butter, peanut butter, or cheese. Have her eat peanuts or cheese along with her carbs if she likes them. Try to sort of layer foods that spike differently, to keep things smooth, so that there is always something slower-acting along with the faster-acting.

We have never worried much about sugar, except in things like popsicles, juice and other forms that aren't slowed down by other ingredients. And these dietary ideas come from her excellent nutritionist, and all 3 magazines we subscribe to have articles about this all the time.

Type 1's actually need more sugar than most people, to handle lows and to handle exercise...

Another thing- has anyone told you about the morning hormones? All children run higher in the morning, from 3 or 4am to 10 or so. The pump helps a lot with this. But with shots, the kids need more insulin for breakfast. If they eat with a high blood sugar in the am, they will spike even higher after eating because the hormones cause insulin resistance. And in all these years, my daughter never eats fruit or cereals or anything fast-acting in teh am, because the insulin can't handle it at that time with the insulin resistance from the hormones. This is even more pronounced when they are growing, or stressed.

I don't know if you have gotten the idea from medical folks that this whole thing stabilizes, because it doesn't. Lisa mentioned that her 4 students are all "brittle". Frankly, and I go to groups and do a lot of reading, all type 1's are "brittle." It is normal to have fluctuations from 40 to 300, frankly. The body is a mystery- there are a lot of things going on in the body that affect blood sugar, not just food, Every emotion, every hormone, every gland, every bit of exercise, everything going on with the immune system.

If you test 4 times day, the diabetes will appear to be more "brittle" than if you test 10. Testing is not for safety only, it is for information which you can then use to manipulate blood sugars, to decide about insulin and food, and to see how she reacts to things like exercise. The less formulaic the care, the more in tune with what is going on each individual day, the better the results. Again, this is much easier on the pump.

I do not understand why MIkayla's blood sugars are still so high. I'm not saying that these MD's are diabetes "ducks" but it does seem that they are awfully comfortable with these blood sugars. I don't think Mikayla could be feeling very well over 300 like this, for long.

I gain offer our doctor, Stuart Brink, at 781-890-3610 in Waltham Mass. I am going to ask him if he brings kids down this slowly. He is the only doctor we found, and we tried several, including Joslin, who had the courage to tell us the truth about high blood sugars, and encourage us to do better.

I don't like to upset you, but you haven't even dealt with the hardest part, which is lows. Lows happen frequently- a few times a week. It's going to be part of your life, unless you run Mikayla very high. Sometimes the worst lows actually come from correctin doses of insulin, so even running them high doesn't avoid lows.

But if you're aiming for somewhat normal blood sugars, and there is insulin present, which pulls blood sugars down, she's going to have lows. it's a fact of life.

My worst guilt came when I would read the paper a little too long, or someone would call me on the phone, I would tell them I had to get off and they would keep talking, and she would get low! And there would be distractions with the other kids' needs. One of them fell off his bike, and while I tended to him, my daughter got low. My son had anaphylaxis and I had to rush him to the hospital, and she got low then too!

I have gotten up at night for 11 years, and so do many others. I used to get up at 1 and 3, but now I can usually sleep after 12 or 1. I have two alarm clocks, one in the hallway that I have to get up to shut off.

JDRF has parents coffees fall-spring, and they also have other ways or you to contact other parents. I really think that, as with many illnesses, it's the parents who reall know what this is like and can help you the most.

Every child is different. I know families with two children, and one is much harder to manage than the other.

Lyme and antibiotics complicate the picture. We are now dealing, finally, with a massive yeast infection which has caused gastritis, esphagitis, gyn. infections. and food sensitivities, including gluten (and yes, blood sugars spike hugely w/this). The combination of diabetes and antibiotics puts our kids in a small group, including AIDS and cancer patients, who develop such massive yeast problems. But it took me a year to get an MD who would think about this.

To lighten up all this apparent negativity- which is just reality- I will tell you again that my now 15 year-old daughter is now thriving. She leaves at 7am and comes back at 9pm some days, she is so busy with her school, music and drama. She has two jobs lined up. I am finally enjoying some respite, but the only person who could give that to me is my own daughter, with her maturity and good judgement.

The hardest years for us were the middle school years, when we both wanted her to enjoy more independence w/her diabetes and life than she could really handle. Her social life was affected. Sleepovers are difficult, for instance.

I wanted to keep these burdens on me, but to be a good mom I had to give them over to her. It's her illness, not mine. I wish it were me, not her. But she has taken it over, stress and all, and I am just here to help when she needs it. Some people may push you to give her independence early, but research has shown that having a 'team" feeling throughout adolescence, and giving a lot of support, ends up with a more independent, healthier kid in the long run.

If you ever want to talk, I will give you my e-mail and then my phone number.

p.s. Although Mikayla's body may think that she is low at cetain fairly high blood sugar, that does not mean she has actual low blood sugar. Lows have two stages, The first is a hormonal early warning system that blood sugar is falling too much. This involves pallor, shakiness, agitation, hunger. This is what MIkayla is having. The level of sugar is not too low in the blood or brain at this point, and ceratinly not in Mikayla's situation. The second stge is when there is actually too little sugar in the blood, and the brain becomse affected. Then there can be violent behavior, drunkennes, unconsciousness, seizure, eventually death. Mikayle is exremely far from this with her blood sugars. Her body is misperceiving and her hormones are setting off the early warning system with HIGH blood sugars. I would think her blood sguar thermostat could be set faster than they are recommending, and she would be safe in any case. She will continue to lose wwight and not feel well and act funny until the sugars some down some. They will always spike, but they will go up and down. If she is fairly normal in her blood sugars every few hours, she will feel better and gain weight. And water does not bring sugars down, only insulin does. PUSH for MORE insulin!

[This message has been edited by Lyddie (edited 21 May 2005).]
 

You have received some very good advise..I am very happy with most of the replies.

I agree with Lyddie almost 100%..Somehow, the highs must come down or there can be long range complications..I now panic at a count over 300..

As for the testing in the classroom...If is imperative for children that are able to take care of these needs on their own as much as possible( As long as the child is responsible)..From personal experience, it is much more detrimental to constantly or even daily to have to leave the classroom to go to the nurse..NO teacher has ever remembered what my daughter may have missed..

She has been picked on by teachers that forgot the reason for her having to leave and even yelled out for eating a quick snack in class. She has always been timid with teachers and afraid to ask to leave the room..We finally got an ok that she was to just get the teachers attention and not have to blurt out that she had to check her sugar and still it has caused problems with her leaving class..She is also not to have to worry about the wait for a pass..But then the nurse forgets and chastises her for no pass..It has been very difficult.

So her unhealthy solution is, the hell with it, I just will not test at school..She is 18 and no one can make her.

If it were just a blood issue, she could go to the restroom but it is a liability issue..The nurse is afraid she might have a low and not be treated in time.

I think a fear of blood should not be an issue since it is only a drop..And it was unfortunate that a child attacked others with an infected lancet..That is no less criminal than attacking people with a tainted knife..Diabetes is not to blame..Criminal intent or a very troubled child is to blame..And should be prosecuted.

If someone is so troubled they could use any weapon, knife, scissors, razor, ink pen, stick pen, thumb tack, staple..It isn't the devise to blame, or the mother of the child(well, it might be sometimes)but the intent and use of the weapon and the child using it.

We also had some success with controlling my daughters blood sugars with a gluten free or low gluten diet. She will not cooperate currently with that..Hopefully , you will have good control soon and not have to deal with an 18 year old with psych issues.
 

I wondered about the ketchup as well, but the book the nutritionist gave me, said she could have 1TBS a day. It only has 4 sugars per serving...

I spoke to the diabetes educator today and she told me that she will probably increase her insulin levels by 1 unit Tuesday, after the nutritionist and nurses go over her meal diary... and sugar levels.

I am testing 8 times a day..

They are having me check her ketones if her levels go above 500, as right now her lowest sugar level is 271. They are more worried about a low at this point..

They are hoping to have her levels more stable by the end of next week. The goal is 200's.

Mmm, I never thought that her fussiness and agitation could be from a high and not a low...

I'll have to put that down in my list of questions to ask the nurses on Tuesday..

For now, they wanted me to concentrate on treating her symptoms, not her sugar level. They told me if she were moody and her levels were below 300, to give her a snack, as her body may think that it is low on sugar, as it was so high ( almost 1000) less than a week ago..

So I'll make sure to mention this when I talk to the nurses or doctor tomorrow or Tuesday.

Thank you for the encouragement!!! It is truly appreciated.

Thanks again Lisa!

~Missy


 

*Note* ( Please forgive this post if it seems like I am jumping from subjects, What I did was cut your post to my reply and am responding to your posts, as I am way to tired to try and remember what was said and I wanted to respond to everything )

Yes, I do find this thread very helpful and am very thankful to everyone for their continued support through all of this!!!!

I understand what you must have been feeling, as I too take a bath so I can find a few mins. to be by myself and try to take it all in, without being brave!

I'm not sure what tight control means, as we haven't touched on this subject yet. Right now they are concentrating on trying to get her levels down to a more normal state.

About the honeymoon, I'm not sure why they are referring to her spikes as a honeymoon, but that is what everyone is calling it. It appears as if her body is still producing a little insulin, as we keep adjusting her unit levels and are getting highs and lows??? I'm not sure, as I'm so new to this, but that is what they are calling it.

As for the dietary advice, when I saw the nutritionist, it was only an hour or so after she went into shock and her levels were over 1000. So the emergency was to get her levels down and work out a meal plan later...

Mikayla was so upset that she was boarder line hysterical.

So instead of putting her in the hospital and upsetting her more, they decided that as I was able to be with her 24 hours a day, that it would be Better if she were at home with me. And that I would learn as I went...

And I agreed wholeheartedly, as I know from past experiences with hospitals, that no one, no matter how loving they are.... can take better care of a child than a dedicated mom

So anyways, the nutritionist only met with us for an hour or so that day and went over what a carb was, to make sure we gave a protein with the carb..(that's why I do PB or cheese with crackers) she told me to avoid table sugar and foods with processed sugars for now.

She asked me to keep a detailed list of the "normal" meals or snacks Mikayla usually eats ( minus the new sugar restrictions) and that we would sit down in a week and go over her diary and sugar levels, to work out a dietary plan for her.

I did find out that when I gave her 1/2 cup regular ice cream ( i was told she could have this on at the party we went to) that her levels went form 450's to over 600 in less than 1/2 hour...so maybe that's why they said no sugar for now?

I am meeting with her on Monday to go over everything.. I'll let you know how it goes, I'm so new to this it's very overwhelming..

About the morning hormones... No, I haven't heard about this yet either.

And looking at Mikayla's sugar level log, the morning readings average from 280's to 320's..which are actually the lowest of the day.

Maybe once her levels get somewhat normal they will be higher like others..I'll make sure to watch for that!

You said " I don't know if you have gotten the idea from medical folks that this whole thing stabilizes, because it doesn't."

What I meant is that the doctors and nurses at the diabetic clinic all told me that once we get her blood levels stabilized...meaning more under control and not jumping from 300's to 900's, it will be easier to manage.

There have been several readings the past week that were too high for our meter to read...I think that is what they mean.

I have been told to take it one day at a time and that even seems like too much right now

But overall, I think things are going well. A doctor or nurse calls me daily, we see a doctor or nurse every 2 - 3 days and Mikayla said she is feeling better..so I am hoping we are on the right track!

About testing, right now, they are having me test before and after every meal, once at bedtime and a couple times through the night..at least 8 times a day.

Is that okay?

you said" I do not understand why Mikayla's blood sugars are still so high. I'm not saying that these MD's are diabetes "ducks" but it does seem that they are awfully comfortable with these blood sugars. I don't think Mikayla could be feeling very well over 300 like this, for long. "

Actually from what I have heard from parents of children with diabetes, the school nurses, and my pediatrician, is that this doctor is excellent.

He hugs Mikayla and explains things very bluntly but with compassion. Mikayla already loves him..of course he gave her a teddy and a princess pen..

But, SO far I am happy with him. But if I want a second opinion, I will look into your doc. thanks...

About the levels, the doctor and the diabetes clinic said research has proven that it is best to take children who went into the type of shock Mikayla went into ..levels registering more than 1000, down slowly as it was better for her...

And her pedi agreed. I do have a call into Dr.Jones, but I haven't heard back from him yet...

You mentioned lows, from what I read it is very scary. I am hoping between a good well balanced diet, consistent sugar testing, and monitoring her, that I will be able to keep her lows in control..

This is probably a fantasy, as I know she will have lows no matter what I do, but I'm going to try my dambdest ( is that a word?lol!).

But incase of a low, I have glucose tabs in every room of the house, car, purse, and every relative has a bottle with them as well..

Plus I carry 100% juice boxes and snacks with me at all times.. so hopefully I will be prepared.

Thanks again for all your help and experiences, I truly appreciate it!

My email has been acting up for months as someone sent me a virus that got through my protections somehow, but when I get it up and running, I would love to email you!

Thanks again!

~Missy

 

Thanks so much for posting!!!!

I spoke to the school nurses about testing, and they will do whatever Mikayla is more comfortable doing..

BUT..as she is only 6 years old, she will have to go to the nurses office or have the nurse come to her classroom to do her testing.

But I thought it was nice that they are giving her the choice of whatever will make her more comfortable.

I agree, I don't think the amount of blood used for these new testing meters, warrants concern.

Mikayla's meter requires a tiny drop, which is actually sucked up into the test strip. She has the meter with the drum roll, so there isn't any need for anyone else to come in contact with her blood..

as all you do is push the button, hold the meter over the medical disposal bag, that comes with her meter, and it will drop into the bag with no contact...

Plus, I have to say, I would be more concerned with paper cuts, bloody noses, or stubbed toes, than I would be from these test strips, as the amount of blood is FAR LESS!!

That is awful what your daughter had to go through... How long ago was she diagnosed?

I'm sorry she had to experience all of this..it makes me so sad and mad!

I guess we are lucky to live in a small town with 2 full time nurses in the elementary, as they seem to be bending over backwards to help us..

They even read the "Taking Diabetes to School" book, the diabetes clinic gave me in the "Bag of Hope" to her class last Thursday...

And invited Mikayla and her Diabetic teddy bear, to see her class mates and talk about her illness...

It was actually a great experience for everyone, as the kids all saw that it was the same ol' Mikayla, she just has a sickness...

We showed them her meter, test strips, syringes, bruises from the shots..and of course her newly beaded ID bracelet, I just made her..they all wanted one

And Mikayla got to hug all her friends and realized that they loved her for who she is, and that her sickness didn't matter to them at all.

And the best news is that one girl in the class, has a cousin who is diabetic. And she was talking to Mikayla about how she would help he count her carbs and when she came to visit her, that her mom had special candy in the diabetes drawer..

Mikayla thought it was so cool that someone else actually understood what she had.

So hopefully the school will continue to cooperate with us..if not I could always go back to homeschooling.

Thanks again!!!!!

~Missy

 

Thanks so much for posting!!!!

I spoke to the school nurses about testing, and they will do whatever Mikayla is more comfortable doing..

BUT..as she is only 6 years old, she will have to go to the nurses office or have the nurse come to her classroom to do her testing.

But I thought it was nice that they are giving her the choice of whatever will make her more comfortable.

I agree, I don't think the amount of blood used for these new testing meters, warrants concern.

Mikayla's meter requires a tiny drop, which is actually sucked up into the test strip. She has the meter with the drum roll, so there isn't any need for anyone else to come in contact with her blood..

as all you do is push the button, hold the meter over the medical disposal bag, that comes with her meter, and it will drop into the bag with no contact...

Plus, I have to say, I would be more concerned with paper cuts, bloody noses, or stubbed toes, than I would be from these test strips, as the amount of blood is FAR LESS!!

That is awful what your daughter had to go through... How long ago was she diagnosed?

I'm sorry she had to experience all of this..it makes me so sad and mad!

I guess we are lucky to live in a small town with 2 full time nurses in the elementary, as they seem to be bending over backwards to help us..

They even read the "Taking Diabetes to School" book, the diabetes clinic gave me in the "Bag of Hope" to her class last Thursday...

And invited Mikayla and her Diabetic teddy bear, to see her class mates and talk about her illness...

It was actually a great experience for everyone, as the kids all saw that it was the same ol' Mikayla, she just has a sickness...

We showed them her meter, test strips, syringes, bruises from the shots..and of course her newly beaded ID bracelet, I just made her..they all wanted one

And Mikayla got to hug all her friends and realized that they loved her for who she is, and that her sickness didn't matter to them at all.

And the best news is that one girl in the class, has a cousin who is diabetic. And she was talking to Mikayla about how she would help he count her carbs and when she came to visit her, that her mom had special candy in the diabetes drawer..

Mikayla thought it was so cool that someone else actually understood what she had.

So hopefully the school will continue to cooperate with us..if not I could always go back to homeschooling.

Thanks again!!!!!

~Missy

 

sounds like you have it well under control..you like your dr and your nutritionist...I've had kids wiht highs their first few weeeks, (docs did call it their honeymoon phase) and then settle in nicely..hopefully mikayla will too..i'm sure they'll figure it all out for you.

ON our medical management plans we do use water to help our diabetics bring down their high sugars when they don't have ketones though, all of their physicians recommend it, and it does work for them..so you may just want to check with your physician about this is you ever get worried about her bs getting in the 300 range, with no ketones and you don't want to have to give her insulin etc...water over the course or a 1/2 hour or so willl usuallly bring my diabetic kids down a good 30-40 points as long as you don't combine it with any carbs or protein at hte same time...

Every child is different, and you guys will find your groove with the help of your doc and your nutritionist...I have three very stable diabetics who only need to test at lunch now..and then I have very 'brittle ' kids who have very wide ranges of blood sugars and have to test quite often as they are going through puberty.;;..every child is different...

you're doing great!
Keeping you guys in my prayers as always..

Lisa
 

There's not much else for me to say except that very old models of diabetes care are still being taught in nursing schools and used in the schools. Laws and regulations need to catch up to new ideas and methods in diabetes care.

Endocrinologists are too concerned about lows with children, and the quality of care suffers.

Reading some of these posts are like reading that two weeks of antibiotics covers all Lyme. It gives me the same feeling.

Lymebrat, in a few months, if you want to communicate about philosphy of treatment, particularly tight control, let me know. Right now, you need to trust those who are helping you and the information I can give you is not consistent with that goal.

The priority right now is basically survival, not the level of control. Let me know if I can help if you even find yourself unhappy with what is going on.

I do think you are letting yourself get too overwhelmed here, and need to start pushing for more progress. If their goal is 200's, that's still way too high.

Someday you may read this post and understand.

[This message has been edited by Lyddie (edited 22 May 2005).]
 

Just the lyme is horrible enough without anything else and from our experience, what works for lyme in others may not work due to the diabetes. It makes everything harder to treat. My daughter has a high and then the psych things kick in and then there is no control..So there is spiraling out of control..By then no one can intervene because she is violent.

I have missed if anyone has mentioned a glycogon shot to you or not..We got 2 kits , one for school and one for home and this now reminds me that they need to be refilled due to expiration..We have never had to use them .They are for an extreme life threatneing low, where the child does not respond and sugar/glucose tabs are having no affect.

While you are overwhelmed and confused, you have received some good advise from many of the posters..Lyddie and I will both agree that in the past there was not as much info floating around.. Some of it is contradictory, but just because you are not past the immediate emergency situation..I would print it all out and go over later..

And Lyddie can be a great help when you figure out the other things you may need to learn about..Also it is great that you had a school nurse adding to this post..While we have had a nurse with a good diabetic ed, she is excessively liability conscious. Lisa, it seems that you have probably helped many children. Thanks for what you have done.
 

In schools, this is extremely important for focus and learning. The brain works best at normal blood sugar levels. Young children particularly have trouble concentrating with higher blood sugars.

This tight control does not happen in hospitals however, or in most schools. Diabetes Forecast, the ADA publication, says that hospitals tend to run patients over 200. This also happens in schools (if a child only tests once at school they are running high).

One reason patients and school kids are run high is money, and understaffing that results from unwillingness or inability of these institutions to fund staff adequate for tight conrol.

Another problem is lack of education on or understanding of type 1, and the amount of time and effort required. Studies have shown that each day, tight control requires two to three hours of effort! That means that an extra staff person would be required to care for two kids at school (6 hours).

The final and very important reason that tight control is not practiced by these institutions is fear of liability. Lows are a short-term problem, and the liability falls on whoever is taking care of the person right now.

Highs are a long-term problem, and complications take years to show up. Liability cannot be traced to anyone in particular, and certainly not to anyone in the immediate present.

The only exception would be blood sugars that are high enough to cause ketoacidosis, and that has to be pretty high for a period of time. So everyone runs the kids and patients in the 200's and 300's so they feel "safe."

This greatly affects the well being of people with this type of diabetes. Something has to change.

Tight control causes triple the number of serious lows, and a lot of lows in general. It's a fact of life. Our daughter has never had a severe low in 11 years, but she has them fairly frequently in the 50-60 range. She is thriving. Our doctor is courageous enough to support tight control, and trusts his patients and parents to do a good job keeping safe while well-controlled.

plus making hte generalization that all schools don't take care of hte kids properly is a generalization too.. maybe in your area thats true, and i'm truely sorry it is...but in our area, our nurses have to go to yearly training to keep up with all the new regs and requirements on pumps and diabetes changes...

Every diabetic student needs to be treated differently, as should every other child with a disease...no two are alike. It's an effort for the team of dr, nutritionist, parent, school nurse and child to keep the child on the safest and healthiest path for him or her.
That, I think we both agree on.

And that , I think is what Missy is doing exactly. Great Job Missy....

Lisa
 

Of course Missy is doing a great job, but she will need to make decisons about her philosphy of care for a child who has Lyme and type 1, and I am trying to give her and others a point of view that is becomingly increasingly mainstream. Lyme will make good blood sugars even more important- those critters love sugar.

You are part of a policy-making group and your apparent hostility to tight control is not only puzzling but disturbing, since you are working on regulations in your state. Please stop being defensive and consider the truth of what I have written: fear of lows is compromising care.

The example of a child with a seizure disorder is a rare exception. I have already written in a post that some kids do better running higher, in terms of safety, but it should be more possible to choose intensive control than it is-for those who choose it.

Blood sugars over 150 over a period of years may lead to blindness, kidney failure, amputations, neuropathy and caridovascular problems. These problems are cropping up in the late teens for kids who have had diabetes since they were young.

I don't understand the argumentative tone, perhaps you are misreading my intentions or my own tone.

I am done with this thread, as I said, I just ran into this article and wanted to share it as long as there was a thread here to post on. I am sounding like a broken record (for those of you old enough to know waht this means) and am trying to help. I am sorry if for any reason it appears otherwise.
 

Thanks for the posts!!!

Mikayla is adjusting to her new way of life very well. She is now able to do her own finger prick and blood sugar test, all by her self

I am so impressed with her courage and acceptance of her new daily challenges..I never would have thought that after only 9 days with diabetes, that she would be doing her blood sugar test solo...

She also helps set up everything we need to do her insulin shots and she helps roll the insulin bottles, wipes the tops of the bottles with the alcohol wipes and keeps perfect track of rotating the injection sites.

I am very proud of her.

Update

We went back to the diabetes clinic today and met with the nutritionist, diabetes educators and nurses..

They said we are doing a wonderful job with keeping her food diary and blood sugar log. Mikayla has gained 1.6 pounds, and she looks so much better.

Last night and Sunday night her sugar levels dropped to 111 and 102 and Mikayla was VERY symptomatic of low sugar..

She was fussy, argumentative, dizzy and said she felt sick. So I gave her a snack and within 15- 20 mins she was fine.

Last night she was restless in her sleep, I thought maybe she was having a nightmare..she was kicking the bed, growing in her sleep, crying ( no tears..just crying noises) and when she woke up, she was out there..

So I did what I was told and gave her a snack..then I took her level it was 102.

Again about 20 mins later, she was fine and when she went back to bed, her level was 181 and she slept peacefully the rest of the night..

So I was told that as her body is going from the 400's down to 100's that her body is responding as it is a low.. ( she has lots of 200's as well, but she has no symptoms at this level)

Plus they feel it is possible as this happened at the same time both nights, that her body may be making it's own insulin.

So I have to cut back her night time insulin by 1 unit tomorrow and see how it goes and if she gets dizzy, fussy, agitated or other symptoms I have noted when she is symptomatic of having a low, that I should treat her regardless of her actual clinical sugar levelm by giving her a snack.

I hope I am wording this correctly so you can understand what I mean..I haven't slept more than 3 hours a night since this all happened, so I have a hard time saying what I mean.

But basically Mikayla's diabetic team believes it is more important at this stage of her illness, to treat the symptoms..not the sugar level.

Oh, I wanted to share this with all of you..Mikayla gets $2.00 a week for her allowance. This morning when we left to go to the doctors, I noticed she took $2.00 from her bank. I thought she wanted me to take her shopping...

When we got to the diabetes clinic, Mikayla took out "her" money and gave the nutritionist and diabetes educator each $1.00 to put toward diabetes research...

They were very touched and surprised that a 6 year old child would do something like this on their own and are sending it to the JDF with a note explaining where the money came from.

I wasn't surprised at all, as Mikayla is always giving to others and has a heart of gold.

Each year she takes several of her new birthday and Christmas gifts and gives them to the "toys for tots foundation" or donates them to churches of hospitals...

She is a sweetie...

I have so much more I wanted to share with you...joining a walk for diabetes march, looking into diabetes camps, how my hubby is trying to handle all of this, but I am so tiered, I'll have to come back and write later...

I just wanted to give you all an update and let you know how well Mikayla is doing in dealing with all of this..her spirit and attitude amazes me.

Thanks again for everything..

God Bless,
~Missy

Glad things are going better...maybe the honeymoon is starting...

p.s. kids tend to run low around 1am...from midnight to 4am my daughter's pump's insulin rate is .95; in the middle of the day, it is 2.7!

[This message has been edited by Lyddie (edited 25 May 2005).]
 

sounds like things are right on target. I have many kids who do poorly when they're blood sugars are much below 160 or so...so they're docs keep them at about 200, they are tiny kids, and for some reason get like your daughter does when they get too low.

I agree to watch her symptoms and not her sugars..thats what we do too...the numbers will even out later..sound like things are going great. I"m happy for you...mikayla sounds like she's adjusting wonderfully and things are settling in nicely...

remereing you can email with any quesitons..

you're doing great...your daughters in great hands...

Lisa
 

My son has had type one for thirteen years now. I can't believe what I'm reading on this thread about homeopathic "cures" and keeping blood sugars high for "safety" sake. Good lord, what will happen to these kids' kidneys and eyesight later on?

I hope things change in your system soon. YOu do have the right to sue you know.....Nurses are responsible for your children from the moment you leave them in their care....that's why we are in such close contact with each ones physicians and have very specific medical management plans for each child....It is very important, just for the reasons you mentioned.

I"m sorry you've had to endure this....just like there are bad teachers, bad doctors etc... there are indeed bad school nurses...

best,
Lisa

[This message has been edited by lla2 (edited 25 May 2005).]
 

I want to comment on the atmosphere between posts and differing information on long term medical management dor type 1 diabetic children.

Missy, I think within this thread you have some golden information that could help in taking Mikayla onward and upward through life with diabetes.

It seems to me, this is like Lyme and many other illnesses only in that the generally practiced care may not be the very best care..(edit, luckily with diabetes, the studies have been done to determine the best management, sounds like some practices need to catch up to that?)
Mothers are educating themselves and working with cutting edge mamagement to strive for for the children.

Lla, It seems obvious that you are an exceptional school nurse, and I'm glad not only you but your collegues are taking these kids to heart.

At the same time, the education, information and care of mothers of diabetic children should be considered invaluable IMO.

It seems to me the advocacy for tight controls for the duration is better for the children long term. (edit: and it's the reccomendations of the current standard of care)

Perhaps instead of defending lines, it will be so much better for type 1 diabetics if the medical standard of care (that could well be skewed toward avoiding lows..)
honors the important points Lyddie is making as to the long term benefits of the child.
Plus, they perform much better in their lives that way..
not to mention the considerable risks involved with running high!
(not for you now, Missy, of course)

This sounds like something that could really help the kids if medical personnel began honoring it.

Liability and knee jerking (in this case..keeping them high because it 'feels' safer for medical personnel in the short term)..this kind of fearful management is often an obstacle to medical care that's best for the patient overall. (this is a general comment, not to you Lla)

Missy, I think the Moms who have been dealing with this disease for years with their children could offer you priceless
info once you get beyond the hurdle of the first month or so.

Many Blessings to Missy and all,
thanks to all for putting so much care and information into this thread..
I'm sure this will be very helpful to others with Diabetes and Lyme. I know I've learned allot!

I also want to commend Lyddie for persevering and putting so much valuable insight in text on this thread.

Mo

[This message has been edited by Mo (edited 25 May 2005).]
 

The exception would be anyone who is having excessive, and dangerous lows.

Also, insurance companies cover 10 fingersticks a day, lots of needles, pumps and supplies and everything else needed for tight control, exactly because it is the standard of care.

This is a very different situation than Lyme. An important study was done in 1993, the Diabetes Control and Complications Trial, that proved tight control (intensive management with either multiple daily shots or a pump) prevented complications. This is not an"alternative" idea at all. I f only we had a DCCT type study for Lyme too!

The blood sugars that Lisa is talking about- in the 200's- are NOT the standard of care. Furthermore, if a kid is testing at lunch and the result is 200, that kid has been in the 300's or 400's all morning, because the insulin pulls you down over the course of a few hours (if it's shots).This is completely unacceptable.

I do understand where Lisa is coming from,and, without going into (even more) excessive detail, the system needs to change, but in no way is this post directed at hard-working school nurses who do the best they can with what they've got.

My daughter's HgA1C's are in the 5's. This is a 3 month average of around 100, a "normal" blood sugar average. The standard of care is to have a HgA1c less than 6.5, which is around 120. (I don't have the chart on Hga1C's right here, so this latter figure is from memory)

So again I am not offering an "alternative" viewpoint, as we all do with Lyme. I am trying to let Missy know that MIkayla has a right to blood sugars that are as near-normal as possible for her, for better health and cognitive/emotional functioning in the present, and to prevent awful complications later, including early death.

This is truly and literally a Civil Rights matter, and the Federal office of Civil Rights even met with our school to do an inservice training.

The attitude that it is okay to run around 200 is a choice a parent can make, and there may be good reasons for it, but in general it is outdated and not consistent with current standards of care, and eventually, I believe will be handled legally.

Our endocrinologist has told our school that I know my daughter's diabetes better than he does (in writing). I don't say this to brag, I say this to support what MO said, which is that parents know their kids best.I am fortunate in that the school has never questioned the need for tight control, but I have had to fight for its logical consequence- adequate staffing.

The nurse lost track of my daughter one day in 5th grade, and she was taken out in the woods by a visiting nature group, at snack time, with no snack available to her. This happened despite all the training we had done in the schools, and the communication systems we had set up.

I had one of those psychic moments Missy talked about earlier, and went up to school. The principal ran out and carried my child back in, she was very low.
After that, they hired another person! I like a lot of these people, but it was fear of a lawsuit, not my years of reasonable advocacy, that got this extra nurse.

Also, my daughter almost passed out and slurred her speech for 24 hours from a low in kindergarten, when she had only had diabets for 6 months. This resulted from her class going to a bigger playground at recess, so she had more exercise. Her dinner shot was much more potent and she got very low.

Was the solution to run her higher? NO!

We worked with the school, and the playground monitors were given notebooks to keep track of her activity at recess throughout the rest of Elementary School. They reported the activity level to the nurse, who reported it to me. If she was very active, both the nurse and I reduced her insulin levels for 24 hours, and she had extra carbs at recess. We were all careful to test her very frequently, too.

After a while, we all knew what adjustments worked best if she was on the swings, or if she played tag or even soccer, at recess. Same with gym.

That is what tight control at school involves, and my daughter has thrived.

I am proud of the good relationships that we have developed with the school, as the wonderful effects of tight control have become obvious to every person who has taught my child. We have had our battles, but in the long run there is a lot of goodwill for what we have done (together with the school) because it so clearly works.

Missy, there are lots of parents groups, and as I have detailed before, many good diabetes books and publications out there.

Very few understand this life, and talking with other parents, who live with it 24 hours a day, 365 days a year, will help you a lot.

But first, get through this crisis time, which it sounds to me is starting to happen.

[This message has been edited by Lyddie (edited 25 May 2005).]
 

I'll try and edit that..

Mo

[This message has been edited by Mo (edited 25 May 2005).]
 

I dont know what insurance companies you are talking about. I know more than a few type I's and NONE of them have coverage for test strips (which are very expensive).
 

However, there are still some docs who feel like missy's doc does, don't worry so much about the numbers as how the child feels...not saying I agree with it, just saying I HAVE to follow their adn the parents medical managememnt plan since it it the child's medical orders.

Have to agree about the test strips. Have kids on medicare here who can't get test strips, would love to know how to do that for them.

thanks,

Lisa
 

Medi-Herb Gymnema is used successfully as are other products containing gymnema. It's the first thing my doctor pulls of the shelf for testing on a patient that has been diagnosed with diabetes. It seems to benefit both I or II. There are other products/manufacturers. Do search the internet. She ayurvedic suppliers have lengthy articles on all. Do a search on "Gymnema" and you will find lots of info. It has been used for centuries. So has cinnamon.

Lyme and microbial infections can affect all the various hormone producing glands. So does heavy metal toxicity and other toxicity passed down in utero, etc. All needs to be looked at and ruled out. Anyone coming with diabetes to see our doctor, first thing besides addressing Lyme, is "clean-up-the-body" time, and that usually puts people miles ahead in a number of ways.

Be calm, and take care.

I checked with our pharmacist when I went in for something, and he said that in our state, ALL insurances, including Medicaid, cover test strips. Lisa, if this is not true where you are, that is a great advocacy project! They are indeed very expensive, more than $40 a box.

A call to the American Diabetes Association might be helpful for anyone who is having trouble getting strips covered. I know that the ADA has done a lot of advocy work on this topic.

Lancets, swabs and glucose tablets are not covered however, but aren't too bad in price. Hope this helps!

[This message has been edited by Lyddie (edited 25 May 2005).]
 

Each state is differant and some states have no standard--http://www.nasbe.org/healthyschools/states/Pre-service%20School%20Nurse.html

Some require a 2 year associate degree, some a one year certification, and some do require a 4 year university degree.
 

in RI you must be a school nurse teacher. whch means you must have a bachelors degree in nursing (BSN,) PLlus three more years of schooling, or your teaching degree. You must take your nursing license test, plus your teaching license test. YOu must pass both, then intern for a year with pay, then apply and get your full school nurse teaching certication which is good from year to year. YOu must take 6 credits of courses every year in school nurse teaching area to keep up your certification. some of the additional courses include teaching of school health, school nursing, teaching of health educaiton, basics of education etc. , psychology of the exceptional child, introduction to guidance, and many others from year to year. we Also have to student teach....

so in RI, basically you have 7 years of school, and two Bachelors degrees, one in nursing, and one in teaching before you can be a school nurse, and then continue with education every year you want to stay a school nurse in ADDITION to the CEU 's you need to keep your regular nursing license every two years....they keep us very well informed.

I agree with the quickness of the testing , especially with my pump kids now, their in and out of hte office. they just follow their strick med management plans and out they go....of to the rest of hteir day. If they feel 'high' or 'low ' they come down and test it take two minuts and they either bolus, inject if high and check ketones, or they take juice and glucose tabs and retest after 15 minutes and if feeling better back to class depending what THEIR manangemnt plan says..

thanks lyddie, I will chekck with the aDA about those ...becasue that's quite an expense for a couple of my kids...\

Lisa

[This message has been edited by lla2 (edited 25 May 2005).]

[This message has been edited by lla2 (edited 25 May 2005).]
 

One of the biggest problems we've had with a school nurse is the fact that a nurse won't make insulin decisions. She wants a specific, written order from a doctor. It's pretty hard to keep a child's numbers where they're supposed to be without factoring in more than what a blood sugar reading tells you. You have to figure in stress, exercise, illness, etc.

Our best school care came from an aid who had no problem factoring in all those things the way I have to every day. She'd make carbohydrate decisions, insulin decisions, talk to teachers, etc. I could drop him off and forget him while she was there.

But since they did away with her in favor of a nurse, we're back to me having to run the show with the help of my son. The school nurse, because she's a nurse, can't make insulin decisions. If she makes a mistake she has her license to worry about.

I'm not sure why that is, because my son's doctor's nurse makes insulin decisions all the time. So it's not just the fact that she's a nurse. Whatever the reason is, though, school has been difficult for us.

Lisa, thank you for your sympathy. I haven't switched schools because I think after going through ten different nurses, all with essentially the same failing, I'm not sure I'd find better quality care elsewhere.

My son has an outward bound kind of outing coming up smack in the middle of deer tick country. His nurse will be going along. I've told her she's responsible for planning all the snacks, meals, and health care he'll need with no help from me. I would like to have just one field trip where I can sign a permission form just the way every other parent does and then forget about it.

Pray for us.
 

even in our state all nurse HAVE to follow drs very strict orders re: insulin orders, and what to give etc...that law. We could lose our license if we don't follow it. But it's in place to protect your child. If we could make decisions on our own, you could have a bad nurse in there making a wrong decsion that could be detrimental to your child..not a good thing. So all nurses in our state HAVE to follow a med. managemnt plan that strictly tells us what to do in each case from a dr...if we have a question when an ususual circumstance comes us we must call the dr. We do NOT have autonomy to make any decsions on our own re: insulin injections etc...IT' s not just in fear of losing our license, it's the fear of doing any harm to your child...it's a safety issue. The doctor is our boss.I hope this makes it a little easier to understand why ... also, only school nurse teachers with certification can give insulin in our state..not aides wihtout proper qualifications..again for safety reasons...but I think this is a state by state thing..

Lisa

lisa

[This message has been edited by lla2 (edited 25 May 2005).]
 

First, let me give you all a quick update...

It seems as if Mikayla's body is kicking in and making it's own insulin from time to time and it is making our situation even more confusing..

just when I thought I was getting the hang of all of this, I am having to call the diabetes nurse or educator to figure out new insulin dose..lower this one a unit..increase this one a unit...

Auuughhh...I wish the darn pancreas would either work full time or stop sputtering insulin willy nilly and confusing me and making my daughter get highs or lows.

Yest. she was averaging 160's to high 200's. And she was doing great. Then last night, she was in the 500's..

Then in the middle of the night, she was restless and as I was sleeping right beside her, I noticed this right away..

She was kicking her blankets and was so sweaty that her hair was wet. Her sugar was now under 200... so maybe her pancreas kicked in?? I don't know, but it sure is confusing...

Today she was doing well in the 160's and it dropped to under 160 and BAM! she was symptomatic of a low....

So as you all can imagine ( and have probably dealt with) this is very frustrating and scary for both myself and Mikayla.

I of course called the doctor and we readjusted her insulins and will proably have to do this daily until she gets over this honeymoon period...

I talked to our school nurse today to get some input on Mikayla's new health care plan and fortunately like Lisa, our nurses are very caring and well informed about diabetes

and I truly feel confident that between myself, the doctors, diabetes nurses and school nurses, that we will be able to help Mikayla maintain a healthy sugar level and lead a happy "somewhat normal" life....

The school nurse said they will give insulin to Mikayla if she needs it, but can only give what her health plan calls for...

The health plan seems very detailed and has them giving Mikayla a snack in the am..a snack before gym class, they will check her levels as directed by her plan...etc.

They are managing 2 other young children with type 1 diabetes and are going to introduce Mikayla to them when she is able to go back to school, so she can talk to other kids who have the same illness as she does.

I have to admit, I'm a little nervous about putting my child in their care, but hopefully as her teacher has dealt with a child with diabetes before, and there are only 13 kids in her class... and the nurses seem knowledgeable about this, she will be in good hands... I will pray on this!!!!!

Oh, and before I forget, I just wanted to clarify this...

opalwitley said:

I can't believe what I'm reading on this thread about homeopathic "cures" and keeping blood sugars high for "safety" sake. Good lord, what will happen to these kids' kidneys and eyesight later on?

Just to clarify for everyone, I am not keeping Mikayla above 160 as I am afraid of a low.. I am trying my best to keep her from passing out..

She get dizzy and starts to become disoriented below 160 at this time..

We are only 12 days into this ordeal and her little body has been through one hell of a shock and is simply unable to go below 160 without serious symptoms of a low blood sugar..

So in our case ( and I'm sure not all kids fit the magic number, for reasons we may be unaware of) I am treating her symptoms not her numbers.

This is what I MUST do inorder to keep her from passing out.

I have learned so much these past 12 days and I still know so little. i know that there will be a day when Mikayla is out of the honeymoon period and her numbers will be easier to regulate as her body won't be kicking in it's own insulin to mess with my mind

And I'm sure when that day comes, i will be back here rereading all these posts about tight control and everything else, but like Lyddie, mo and Lisa have stated... right now, I need to get through this stage before I can even contemplate anything else.

About the strips My insurance company will pay for 200 strips a month..if we need more ( which I do, as I have 2 meters, one for me and one for the school)supposedly all I have to do is have the doctor call the insurance company.

Plus our insurance company is even paying for the syringes, and lancets. Phew!

I was also wondering if you could all tell me how long it was until your child could go back to school? Believe me, i am in no rush, but I was just wondering...

Mikayla is in a play next week..she is a ladybug If she's not back to school yet, maybe I can bring her in just for the play..

Okay, that's about all I can write for tonight... I have so many more things to say, but I'll have to wait until my fingers work better. I think I am having a relapse as my right hand is killing me and this usually happens when I relapse...

Thanks again everyone!!!!

~Missy

p.s Barrie

Thank you for the encouraging post..

Our doctor wrote the school a note saying that rigid formulas aren't safe or effective.

The school nurses are not allowed to do the adjustments to insulin that are needed, and that is what this last poster is also describing.

I know exactly what Lisa is talking about when she talks about medical management plans, and I understand the adjustments nurses can make with sliding scales, adjustments for highs, food to carb ratios etc.

But it is a real problem that these are written down essentially in stone, and the nurses can't change anything from day to day.

Doctors aren't available for calls from thousands of school nurses! If formulas need to be adjusted frequently, then the only option is the parent.

For my child's health, I therefore have taken calls for years and direct her care from home. I would also, like this poster, prefer that a nurse be able to assume responsibility for thinking about doses rather than just following orders like a recipe.

Noone is saying that this is the nurse's fault. We are just saying that the system doesn't work at all for this disease, at least for the latest methods for dealing with this disease, which demand flexibility.

[This message has been edited by Lyddie (edited 26 May 2005).]
 

I understand what you are saying..

I haven't had to deal with the school yet, so I'm not sure how it's all going to go down.

But I do know that Mikayla's health care plan does alot for some flexibility..if her numbers are this high/low they are to increase or decrease by so many said units.. etc..

And if she has gym, extended recess, etc..she is to have her sugar level tested before the activity and given a snack if needed.

Also, she is allowed to be tested in her classroom or the nurses office, the only catch is that as she is just 6 years old, the nurse is the one who has to oversee the test. Mikayla is encouraged to do what she is able to, but the nurse must oversee the testing.

Also, according to her health plan, she is to have a morning snack at 9:30 and can either eat it at her desk, or in the nurses office, which ever Mikayla feels more comfortable doing.

And as I mentioned in an earlier post, the nurse read the taking diabetes to school book, given to us by the juvenile diabetes foundation to Mikayla's class last week and spent a great deal of time answering the children's questions.

And she invited Mikayla to visit with her classmates and show them her special bear who also has diabetes and showed them her testing kit, syringes, where she gets shots etc...

It made Mikayla feel so good to know that the kids weren't going to treat her differently and that they didn't think of her as a sick kid, she was still Mikayla their friend, except she has an illness..

To me, that went above and beyond the duty of a school nurse's job, they truly have Mikayla's best interests at heart and I feel confident that they will work with me and Mikayla diabetic team to keep her sugar at a safe level...

All I was trying to say is that I'm stressed enough about all this, without worrying that by keeping Mikayla above 160 ( which I HAVE to do..to keep her from passing out!) I am somehow jeopardizing her organs or her vision...

This is all so overwhelming...

What I need and what any mom who may read this in the future, who just found out that their child who has lyme also has type 1 diabetes, needs...

Is support, encouragement, advice, compassion, prayers and the information needed to help their child get through this difficult honeymoon stage.. ( which eveyoen has given me! and I am thankful)

It's very confusing, and even though they warn you not to get your hopes up when her body starts making insulin.. I had that little sparkle of hope that just maybe we'd get a little miracle and it would all just go away...

And then reality hits you right in the face....

I certainly appreciate all the information and will definitely come back to it when the time is right, but right now it's just too much to take in..

and I already feel guilty, sad, mad etc, without fearing that by trying to keep my child at a level above 160, in order to keep her from passing out, will cause damage to her organs and vision in the future...

That's all I was trying to say...

I don't think I am making sense anymore as I am just so tired....

Luckily Mikayla's sugar level isn't going haywire tonight like last night, so maybe I can get some sleep...

Anyways, I'm not trying to discourage anyone from posting, as I said the information will be so valuble to me and others facing this situation in the future, but maybe we could try to not scare me to death ...lol!!!

~Missy

[This message has been edited by lymebrat (edited 26 May 2005).]
 

However, if you are scared of lows, which is emphasized by doctors, it is also good to know that highs are scary too. That's the whole dilemma with type 1. I have assumed that the medical folks have covered this with you anyway.

Highs aren't immediately scary however, the way lows are. So during this introductory period, and while blood sugars are settling down, going through the honeymoon, whatever, of course you can't think about keeping sugars under 160.

Remember too that right now, Mikayla doesn't function best at lower blood sugars, but eventually she should and you will be able to read some of the posts and relate better.

Being scared about complications is an appropriate motivation, but too negative and too hard to FEEL over years of care. The more positive motivation is to feel and function well in the present. This is what I have tried to emphasize in my posts. Not fear, but good stuff .

The other thing I have tried to mention is that Lyme, yeast, all those critters love high blood sugasr. This is another very difficult issue that you cannot deal with now, but that many diabetes doctors won't understand.

So my comments are there for your EVENTUAL consideration. I eventually preferred a doctor who told me the truth, even if it was hard to hear, but that wasn't for a few months after diagnosis.

I hate to tell you this, but I still get up at night. I don't get hugs or sympathy from anyone. My reward is my sparkling daughter. You are a great mom and your reward will also be a healthy, thriving Mikayla one day. Your path may be different from ours, I have only tried to show you an option for later consideration. I'm sure that whatever you end up doing, it will be the right thing.

p.s. I personally commit to not writing anymore posts on this thread, but look forward to hearing how Mikayla is doing in the weeks to come. Sorry for all the back and forth that has been confusing.

[This message has been edited by Lyddie (edited 26 May 2005).]

[This message has been edited by Lyddie (edited 26 May 2005).]
 

[This message has been edited by lla2 (edited 27 May 2005).]
 

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[This message has been edited by lla2 (edited 27 May 2005).]
 

[This message has been edited by lla2 (edited 27 May 2005).]
 

YOu'r e doing a great job mom...keep up the good work!!

Lisa
 

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[This message has been edited by lla2 (edited 27 May 2005).]
 

And then reality hits you right in the face...."

After sleeping on a hospital floor and then a chair for 3 days..We went home to chaos and my stupidity..When we got to the honeymoon, I was so excited..But it ended.

The good news is that you are doing so well with so much to learn and figure out..It is so different for each type 1 and then throw in the tick borne diseases and those complications and it is a monster..

The hope is that there is a lot of great research currently happening and it has a lot of promise..Just the new gadgets and new types of insulin have made this so much better..I know a cure or some type of recovery is on the horizon..Just hang in there as we all are doing..Good luck..

OUr daughter used to have nightly spells where she was out of her mind and cried and made really weird noises..She was in a fetal position mostly and if coherent would be dangerous..We have seen uncontrollable body movements..It rarely happens anymore, but hope yours are not so severe..The psych said it was encepholitis from Bartonella..But she always had a blood sugar problem along with them..

May you soon be able to get some sleep..
lymemomtooo
 

Thanks again for all the posts...

I had to take my son Derek and Mikayla to the doctors today...

Derek got sent home from school yest. with a slight fever and sore throat. Strep is running rampant through the school..it has been since the kids were diagnosed with scarlet fever 4-5 weeks ago..

So I took both kids in for a strep test and evaluation. Both came back negative for strep, but the doc did note that Mikayla's throat is red..

So I went to the diabetes clinic to get a run down on what to do in case she gets sick and doesn't want to eat..etc..

yikes!

I'm sure this will all be less confusing once things settle down, or at least I hope they will

tonight Mikayla was acting very odd and was staring off into space..she had eaten a well balanced meal about an hour before, so I wasn't thinking it was a low at first..

but then she was shaky and said she was dizzy. I did a test and it had dropped to 102.

I gave her a snack and now she is doing fine..I am so glad that her body gives her signals to let her know it is low and that so far I have been able to read them ...

As I have heard others on the diabetes forum say that they had no warning when their child went low.. until they were in danger..that must be so scary!

Lymemom

Thanks for your post and support, I appreciate it!

Lyddie,

I just wanted to reiterate my thanks for all your help, the post I wrote about my keeping mikayla above 160 for her safety, wasn't because of anything you wrote..I promise. I truly appreciate your help and support throughout all of this!

Lisa

I was just wondering if you had any type of time table as to when kids who are diagnosed in your school, were able to go back to school?

Mikayla is anxious to get back to school, but right now the doctors can only tell us, that we have to take it day to day and that she'll be out at least until the middle of next week.

Mikayla's teacher called tonight and said that they are doing play practice tomorrow and that if Mikayla was able to, that I could take her to school just for the play practice and I could be the audience for the kids

If she is feeling up to it, I plan on taking her, as she really misses her friends.

Thanks again for all your help,
Best Wishes,
Missy
 

If mikayla ends up with strep expect her sugars to be all over the board..that's perfectly normal..don't try to figure out why...the body can't seem to regulate the blood sugars when a child is fightiing off an infection at the same time..just a heads up...

about coming back to school..everyone is so different. I have kids that take weeks to adjust and find a comfortable 'zone' where their blood sugars aren't jumping all over the place so their docs and their parents feel it's comfortable for them to come to school, even for a 1/2 day to try it...then I have kids who come in the next week, who have already adjusted to the insulin and are staying even around 100 and doing fine .

you never know. each child is different. I'd take her to the play. that would be fun for her. Remember when you do bring her back to school you're only a phone call away, the nurse has all your and the doctors orders, yuo can leave very clear instructions for hte nurse to call abot EVERYTHING, and YOU can call every hour to check on her. I have parents that do that for hte first few weeks just to make sure the child is ok..and I make it a point ot check and see how those kids are doing in the classroom.

YOu can also start slowly, just have her come in for 1/2 a day too..see how she does..take it slowly...

see what you and your doc feel is best for mikayla..you guys are in charge of her adn are doing a great job so far!! SHe's lucky to have you!@!

lisa
 

There was a period of time when I went into school with my son because the nurses hadn't been trained yet. No one minded. Some kids wouldn't want their parents in school, but I was lucky in that my son loved it.

When he was in the play I always went and just sat out in the theater out of sight so I could test him when he needed. The school didn't offer any healthcare for him for after school programs. But I loved watching play practice anyway, so it was fine with me.
 

Today started off just like any other day this week, with waking Mikayla up, doing her blood test, giving her insulin and eating breakfast...

I gave her a snack around 8:30 am as she was hungry..

Then around 9:30 this morning, I was combing her hair to get ready to take her to play practice at school, and without any warning, she said

" I feel a little wea...k"

As she finished the word weak, she began to lean/fall forward off the stool!!!!!..

SO the first thing that ran through my head, was a low.. even though she had eaten a well balanced breakfast and had a snack less than an hour ago..

I quickly checked her blood and it read 60... I did it again..61...

I have been dealing with highs of 200- 600's the past 2 weeks, so I have had no experience in what to do when she gets this low...

Luckily I reacted without freaking out and was able to get her to sip some juice and I helped her chew 2 glucose tablets...

Then I called the diabetes nurse and as luck would have it, she answered the phone.. She told me I did exactly what i was suppose to do and stayed on the phone with me while I rechecked her levels to make sure it would climb to 80.

It did! And I truly could not believe how quickly Mikayla bounced back from this very frightening experience..

I checked it 30 mins later and it had climbed to 103 and she was feeling much better...

I have to say, even knowing that she could have a low, didn't prepare me for this...

I mean she was 539 2 nights ago! And when she drops below 160, there has always been very clear signs of a low coming on...

Today, there was no warning at all..nothing. She was literally fine one minute and seconds later she was falling of the stool.

I was so scared!

Now I am so worried about sending her to school. I mean I am her mom and was sitting right beside her when this happened and there was no warning at all that this was coming on.

How in the world is a teacher who is watching 13- 15 kids, (one who is slightly autistic,) going to be able to constantly monitor my daughter, in case a sudden low comes over her like today.

I have heard so many stories this past 2 weeks, about kids going too low too quick, but nothing prepared me for this.. and i have to say, it scared the day lights out of Mikayla as well...

She was so upset and was scared that this time she had no "funny feelings" to warn her that she was getting low..

The nurse said that as her numbers have been so high, that a 60 to her body was like a 30 and that the sugar level dropped so quickly that there was no time to give the body a warning sign...

Once I got her above 120, I went into the bathroom and bawled...

I just thank God that I didn't panic and remembered the brief..very brief, training they gave me on what to do if she went below 80.

They have been so concentrated on getting her out of the 300 - 500's that they didn't spend alot of time on what to do if she went this low...

I have been researching all day and discovered that I should have tubes of a frosting type gel readily available, (just like the glucose tablets,) as if she were unable to chew, then I am to squeeze the gel into the side of her mouth and rub it gently in...

No one at the clinic told me this...

Do any of you use this? Does it work?

And when I asked one of the nurses about the glucagon kit, I was told that they don't usually prescribe them for kids this young...

I haven't talked to the doctor about this yet, but I would think I should have one on hand just incase..don't you?

After experiencing what I did today... a child who was acting normal one minuet and was falling over the next, I can understand why some mom's or nurses might want to run their child a little above 120....

I mean I know that once she gets through this honeymoon period, that her numbers will be less drastic than 539 one night and 60... 10 hours later...

And I know I have to keep her in a healthy range for her safety...all I'm saying is after experiencing what i did today, I can certainly see why people are afraid to let their kids get too low...

I mean i had checked her sugar about 30 mins before this and it was 166...if i had taken a shower, let the dog out for a few mins..or what ever, Mikayla could be in the hospital right now, or worse...

This is such a scary illness!

After things settled down today, I went to a friends hair salon... her daughter was home form school with a high blood suagar, so I wanted Mikayla to meet her.

My hair dresser's daughter is 12 years old, she was diagnosed with diabetes 18 months ago.

Her daughter took Mikayla into the sitting room to talk to her and play, and I told my friend what happened today...and she broke down crying...

She said to this day, 18 months later, she still relives the day her daughter was diagnosed, and the day this past feb. when she went to wake her daughter up for school and she was having a seizure and her level was in the 20's.. She thought she had lost her daughter, as she looked dead.

She showed me a tube of some type of liquid glucose that the EMT's told her to get, which is similar to the frosting I mentioned earlier, and she carries it with her at all times..

Like me, the clinic had never told her to carry this and only showed her how to use the glocogun once..so in her state of panic, she wasn't sure what to do, so she called 911.

Luckily they got there in time!

So talking about today's events, brought everything back for her and we both sat there crying, along with the other hairdresser and just comforting eachother..

It was so nice to talk to someone face to face who is dealing with this, and to know that even on the badest of days, I have someone who I can lean on for support...

She's been there, she came so close to losing her daughter, I hope I never have to experience that feeling..today was bad enough...

Please keep Mikayla in your prayers..she is very scared tonight that she won't feel a low coming on and will get sick again... and truth be told, so am I.

I will have to pray that God will give me the strength, guidance, knowledge, and faith I need to take care of Mikayla.....

and to place my daughters life in the care of others, as I am having a very hard time right now even thinking about sending her back to school...

Thanks for listening and being there!

Hugs,
~Missy

First, teach your daughter to correct a low BEFORE you test her. My son has a juicy juice box in every classroom and always carries one on his person. All his friends know where his juice is. I have diligently trained all school personel and friends to assist him immediately with a juice FIRST then test after. If we're wrong, putting him high for a bit won't matter. You can fix that with insulin. But if you wait to test, she can very quickly get to the groggy point where she won't be able to eat a tablet or drink a juice. So that's number one. Correct the low first, then test. You may not have time otherwise.

Second, if she keeps glucose tablets instead of juicy juice, then put the tablets in a container marked "Candy for low blood sugars" Don't leave them in a container marked glucose tablets. This is because if someone trained in CPR or first aid, or any kind of emergency worker IS NOT ALLOWED to administer a glucose tablet or any kind of medication. And while glucose tablets, to us, aren't medication, to a trained certified person it is. They can help a person drink a juice, or eat candy, but not glucose tablets... go figure.

I have met with the new teachers and school personel every year and have a written IEP form at school that makes adhering to the rules madatory. And, as I said, the first rule is, fix the low first, and then test. Then keep the child still. And retest in fifteen minutes.

My son keeps juice in a fanny pack with him at all times.
The gym teacher physically holds a juice in his hand while teaching gym.
Every teacher has a juice in the same place on her desk.
Notes go out to every substitute about the juice and what symptoms to look for.

I would start lobbying for an aide if you can get one. Explain to the school how fast a low can come on. Maybe they'll fund one for you. At the very least they'll let you go in and sit at the back of the classroom until school personel are trained.

Hang in there. I know it's scary. It is the beginning of a long fight for you. I wish you well.