For those of you who may not have read my last post, my 6 year old daughter Mikayla ( who also has lyme) was diagnosed with type 1 diabetes 2 weeks ago today...

Here is the link to the other thread about her
http://flash.lymenet.org/ubb/Forum1/HTML/034021-6.html

( I posted a lengthy post tonight on this thread and will post it here as well for you to read...)

I decided to start this new thread, as I wanted to ask for prayers for Mikayla, as she is so scared right now...

and prayers that I be given the strength, guidance, knowledge and faith I need to help me get Mikayla through this difficult time..

And as only a few posters are now posting on the other thread, I wanted to be sure everyone knew about this latest development and to ask for prayers..

The more people praying for her, the better!

Here is the post I posted on he other thread...

Rough day!!!

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..

The 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 forward..

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- 500'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 these past 2 weeks about kids going to 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 tables, 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 see why people are afraid to let their kids get to 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...

My hair dresser's daughter is 12 years old, she was diagnosed with diabetes 18 months ago.

He 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 he how to use the glocogun once..so in her state of panic, she wasn't sure what to do so she called 911.

So we both sat there crying, along with the other hairdresser and just hugging. It was so nice to talk to someone face to face who is dealing with this, and to know that even on the baldest 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...

Pleas 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 give me guidance, knowledge, and faith I need 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!

Can't tell you how sorry I am that both of you are having to deal with so much. Just breaks my heart.
Have had y'all in my prayers, and will continue to pray for you to receive the strength and wisdom you need each day.

You're a remarkable mom!!
You've handled everything so well.

Long time no see. Looks like you have been rather busy! Oh my.

May I suggest you bothe go live in a sugar cane field? That way sugar is available all the time.. and there should be no ticks in the sugar cane.

Oh well.

I should congratulate you both on your actions today.

You both passed the ultimate test and came through wonderfully.

You said.. "Luckily I reacted without freaking out and was able to get her to sip some juice and I helped her chew 2 glucose tablets..."

PERFECT! You did exactly the right thing! VERY good!

And you did it quickly and like it was something you do every day.

You said.. "And I truly could not believe how quickly Mikayla bounced back from this very frightening experience.."

Yes. With the key word being "frightening". It is that.. for sure.

BUT.. you did it. And she recovered quickly. Of course we all wish the fright wasn't there. But it shows both of you handled the situation well. I am proud of you both. The next time.. and there will be a next time.. it will be easier and not as frightening.

You said.. "I checked it 30 mins later and it had climbed to 103 and she was feeling much better..."

Full recovery. And now you both have experience and know what to do. EDUCATION is what you got today. And better it happen there than many other places.

Ok.. here are a few suggestions..

1. Call the 911 center in your area and tell them you want them to know there is a diabetic child living there. Give them your address and number and her history. They will then be more prepared if the time were to come that you need them.

2. Get a braclett.. a medic alert.

3. Write up her vitals and short history.. insurance info.. and allergies, etc.. and place the paper in a ziplock bag in your freezer. On the outside of the freezer put a note that says.. "Emergency information in freezer". That way.. should she need to call 911.. and they arrive.. the info will be there already.

4. Have 3 friends of hers come to the house and have an educational session on what to do in case she has problems. Anyone who is with her on a regular basis should be offered assistance on how to handle this for their own personal peace of mind and because they may need to know someday for her o others. Teach them to use the monitors, etc. This will make HER feel better.. and you too. Practice with them until they are comfortable.

5. Keep sugar in the vehicles at all times. Keep some sugar in a specific place in the house.. in each room. You may never need it.. but if you do..it is readily available and no one has to do a search or go far to get it.

6. Both of you take a Red Cross Emergency First Aid class so you will be more in control in an emergency of any type. It will boost your confidence and some day you may save a life.

And.. know you both handled this very well. You do have time when this happens. So not to panic. The more you educate yourself and practice.. the easier it will be for both of you.

You done good! Look at this as the trial run.. and you passed the test!

The rest is easy.

Thinking about you!

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If you get the choice to sit it out or dance...

It sounds as if you really have the tools you need to be able to handle everything that comes your way. Keep on reaching out to those who understand.

You are doing great, so hang in there.

Prayers for you and Mikayla.

that's just what I do..so between he juice and the two glucose tabs I would expect that mikayla would jump up to about 100 or 110 within about 10 minutes or so, that's what most kids will do...

remebmer not to give carbs or crackers with the juice or glucose tabs as that will slow down the immediate blood sugar climb you want...sometimes I hve the kids drink another juice before they go back to class.

the gel or frosting I've only used once on a child. I opened their mouth and squeezed it under their tonque, where most of the blood vessels are..knew it would get absorbed the quickest there... her blood sugar jumped about 60 pts in 10 minutes as well.

I have kids as young as 6 with a glucagon pen at school just in case they pass out...they keep them in my office...

It may be a good idea for a while for you to keep juice boxes in the teachers room for when mikayla feels very low like htat..she can yell to the teacher and then drink that as someone takes her down to hte nurse..then the nurse can take over and call you etc. YOu 'll be having a 504 plan i'm sure before she co0mes back to school right? that'll outline all the orders from the doctor etc...you can ask that the juice box idea be included in that if you want...

the 504 is for YOU to put in anything YOU as a parent want in there to feel comfortable for your child while she is at school. If you want to be called every hour for the first week by the nurse, you can ask that that be in there...? ok?

YOu did great with this first low mom..yeah!!

see how quickly she bounces back..now dont' be afraid of them, and keep her too high..ok? now that you know how quickly she can come back to normal you see its ok..right?

Of course you guys are always in my prayers....seems like the angels are doing a great job already looking over you!

Lisa

Second, look on the bright side of this low. You said you couldn't believe how easy it was to treat. it's scary and potentially dangerous, but EASY to treat. It may take 15 minutes to recover fully, but as long as you get some sort of sugar or juice into her, she will be FINE. (Even kids who seize or pass out, are usually fine after treatment...)

I think you can begin to see why it is good to connect with other parents. The professionals do not know as much about how it is to live day-to-day with this disease, and sometimes do not give parents of newly diagnosed parents all the information that helps in practical ways.

When my daughter was diagnosed at 4, and we spent 5 days in the hospital, I read everything they gave me, listened hard to everything they told me, and thought I knew the score.

First day back, I took my child to the grocery store with me, and in the first aisle she started to crawl. She was too low to walk. I didn't have anything with me, because noone had told me about this- I thought lows were some kind of rare emergency. I grabbed some juice off the grocery store shelf and paid later.

Now, no , matter how you decide to "run" you little girl, you will deal with lows. Again, I am going to tell you how it is. With a 6 year-old, or any age really, type 1 involves a few lows a week. It also involves fluctuations from 40 to 300, all the time. This is not just a feature of early
disease. Sorry to tell you this, I really am.

I'm not sure what's going on with Mikayla in terms of a honeymoon. But a week or two after we came home from the hospital, my daughter was on like 0.1 units of insulin (sorry can't remember doses of both insulins) and her sugars were normal. This lasted a few weeks. I was told that her honeymoon was unusually dramatic.

Of course, she had a lot of lows going into the honeymoon, because her insulin was set for higher blood sugars, but then we truly had "normal" blood sugars" without any effort, for a few weeks. No lows, no highs, minute amounts of insulin. This was indescribably poignant and bittersweet, knowing it could go away anytime, and it did, in 3 weeks.

The honeymoon means that the pancreas sort of uses up the last insulin it is capable of making. If MIkayla starts having a lot of lows, and almost needs no insulin, that would definitley be a honeymoon.

But apart from those few sad weeks when I didn't have to worry, the last 10 years has been full of highs and lows, every day. When I write about "tight control", folks need to understand how difficult it is to achieve. We're talking about average results, but a type 1 goes up and down a lot. Sometimes you can figure out the reason and fix it ( exercise, illness, food, stress, meds, etc.) and sometimes it is a mystery.

When my daughter was young, I lived just how you are envisioning: if she played in the yard or went on the swings, she would get low. If I read the paper and was 10 minutes late for a test, she got low. If another one of my children fell off a bike, and snack was a little late, she got low.

My solution- to keep things as stable as possible for my little one was to test her A LOT!!!! I got a lot of grief from doctors for testing her so much (12-15 times/day) until I found a doctor who totally supported this practice. Now, at 15, she can test 8 times. I also tested overnight, twice. My daughter was very hard to manage, and MIkayla may be easier...

i also kept a chart with one week on each sheet, and days horizontaly across, I wrote all blood sugars, and color coded with crayon to see patterns of highs and lows. I also had a section on the side with info on exercise etc. And carbs and insulin were below the sugars. So I got good at the adjustments needed, for playing outside for instance, which is the other part of tight control. With a pump
this is so much easier- teh insulin rates can be change at any time, for isntance if the sun comes out, you can reduce insulin for activity outside.

When I tried the alternative, "running her high," she actualy had MORE lows! This is because we would then be dealing with the undpredictable action of the correction dose of insulin, on top of the other insulin. The pump actually gets rid of this problem.

What you wrote about wondering how a teacher with a lot of kids could notice yoru child becoming low is EXACTLT what I met with our principal about. Our kidnergarten teacher actually did catch a few, but now you can see why some of us started off with the nurse going to the classroom every hour to test. Or going in teh schools ourselves.Mostly they would call me every hour, and, frankly, I was in the position of having to train them. The academic nurse/doctor training on type 1 jsut doesn't cover daily care's subtleties or the need for individual approaches.

It is important for you to know that EMT's on ambulances cannot rescue Mikayla from a bad low. Glucose gel or icing is dangerous if a person is too low to swallow properlly. EMT's are not allowed to do glucagon, because it is a shot. Only paramedics can treat properly, naad they tend to use IV dextrose.

I can't imagine what that nurse meant about Mikayla being to young for glucagon-????? Mikayla won't self-administer, she will be unconscious or seizing if it is needed. You should have glucagon with you at all times, and it should accompany Mikayla anywhere she goes. Someone should always be with her who knows how to do this. The school nurse, and two other people at school are a good number.

Please know that we have NEVER used it for a serious low in these 11 years (despite our "tight control" and my daughter's normal average blood sugar). But it is always a possibility. We have only used glucagon when she is vomiting form a tummy bug and is low, and can't ingest anything,(Try a kid vomiting at blood sugar of 46, who can't keep any juice down).

We keep the gel/icing at school for a low that is serious but it is still safe to put something in her mouth. This gel can also be rubbed on the gums and absorbed, but we ahve never ahd to do that.

The main thing you need at ALL times is juice (juice boxes are good) and/or glucose tablets. The tablets come in handy little tubes. Buy a bunch of tubes, but refill from the large jars to save money. Keep these at school in your bag, around the house. MIkayla should have her own bag with a meter, supplies, and glucose to get her in the habit. My daughter feels naked without her bag- she never leaves it anywhere!

it is a really hard life to live for a mom, but you do learn to put it on the back burner in a way. I hated seeing my daughter as a walking blood sugar at times, but now I am proud to say that when my now teenage daughter walks in the door, I don't even ask. If she has a problem to share with her blood sugars, she'll tell me.

Picture Mikayla's growing up to being independent with this as going from A to Z. I'm probably at R. I promise to be available to you for any amount of years until we both are at point Z!!! And there are many other parents out there too.My son is going to college and that will be the next big step for my daughter-arghhh!!!

When my child was young, I couldn't even imagine how she could be in a play, for instance. What if she got low on stage? What if she got too high from nerves, got fuzzy and forgot her lines? Who would take care of her at rehearsals,a dn how could I be a decent parent to my toher tow kids?

How could she go to the mall or the beach or a sleepover with friends? Would I always have to hover over her and what would this do to her emotionally and socially? In 3rd grade, on of the kids asked me if my daughter would always need a grownup with her, for her whole life, as if she woulnd't grow up!

Frankly a lot of these questions are valid, until around age 12 or 13.
But at this point, she is able to do anything, without any caretaker around at
all. She may go to school at 7 and return at 9pm, having done music and play rehearsal with all friends.

Anyway, I am getting way off track here. One other practical thing: Mikayla won't always feel a low until it is in the 40's or so. There are physiological reasons for this, which are sometimes mysterious but often involve using up the hormones involved in teh warning system , by having too many lows ina few days. This can be corrected by avoiding lows for a week or two. This works. This is a note for later...not so relevant right now.

Lows are scary, but they will be part of your life. They are easy to treat. With a teenager, if she is really low (like in the 30's, which happens maybe twice a year) we now joke afterward. I ask her what 7 times 8 is, and ask her who Thomas Jefferson was, and she answers and we both laugh. Black humor.

I also will warn you that the world does not understand. Countless people treated me like I was neurotic while addressing lows. My daughter was 47 in a soccer game, and I had to interrupt a conversation to deal with it. That mom got mad at me for being rude! When I gave my child juice ont the sidelines, some said "Oh, she'll be fine" as if I was a worry wart,and if I explained the whole thing about "NO, she won't be fine, unless she ahs this juice" it would just sound kind of obsessive or something. The confusion of type1 and type 2 is probalby one of the worst things you will deal with, believe me.

I apologize for typos, Have to take my daughter toa dance class and don't even ahve time to read this over. More later.
We've been there, and you will be where we are ina few years...it does get better, but it's much harder than anyone knows.

I know I can't truly understand all you are going through but your posts are educating me and many others. I know you'll do a great job educating plenty of people around you and Mikayla in case of an emergency.

Hang in there.
hats

why do you feel it necessary to make yourself feel better by dissing 'professionals'..you don't need to do that.

we all know that you are a wonderful diabetic mom who knows a tremendous amount and who is a wonderful asset for MISSy...

dissy professionals about not knowing as much as parent or "not giving info in a practical way" is a real slap in the face...

...and I do take tremendous offense. I"m sorry Missy. If you want any more info from me you'll have to email me I won't be back. Evidently other mom's know best on this post...those of us professionals with 9 years of nursing school and 17 years of experience behind us working with the ADA and with diabetic children couldn't possibly understand or know the proper way to treat diabetic children....it's sad my whole nursing career has been a waste really...

I"ll continue to keep you both in my prayers, but I dont' need to constantly be jabbed by passive aggressive people to make themselves feel superior..we're all here to help.

take care.you're doing great keep up the good work. I won't be back to read anymore posts..so email me if you want to keep me posted ok?

Lisa

However, as I have said before, our endocrinologist has written the school a note saying that I know my daughter's diabetes better than he does. The school asks me to train the nurses in caring for my daughter, and I do, usually over 3-4 months' time.

Parents and "professionals" complement each other, they are not in competition. As with most illnesses, the minute-by-minute living of the life is best known by those who actually live it. This is not dissing anyone else, and I certainly apologize if it seems that is what I am doing.

And every child is different, so it is impossible for "professionals" to be up on the nuances of the individual child's care. For instance, on shots, my daughter may have required more glucose in the morning for a blood sugar of 65, say, than in the afternoon. My friend's child required half as much glucose as mine, but often twice the insulin. It is not a cookbook situation, and it would not be possible for any nurse or doctor to know these individual details.

So, as I say, it is best if everyone works together without wondering who knows the most. The best thing is for a parent to gain confidence slowly, and then guide the professionals to do whatever that particular child needs.

One other thing: this is Lymenet, a self-help board that helps us by asking questions of others who are living with Lyme. Parents helping parents is part of the goal here. There will be occasional criticism of professionals on this board ("ducks") and some venting too.

I can't be comfortable contributing if I always have to worry if a nurse or doctor might be offended. I do try to be polite and reasonable, and avoid sharing horror stories, but I do try to be honest. I am not trying to make myself "feel better," I am trying to help Missy.

p.s. My only criticism anywhere in all of these posts on diabetes is on the unwillingness of some "professionals" to support tight control for kids- as a choice.

I do not know much about the disease or if it's even possible for children, but my wife's friend has a permanent pump that monitors her levels and administers insulin when necessary. Just a thought.

I really pray that you guys learn to control this.

Unfortunately, right now, transplants are much more dangerous than the disease. They haven't figured out a way to do this without life-long immune-suppressing drugs, which make every infection potentially life-threatening. Nooone would ever do this on a child, just folks who are at the end of the road with their diabetes, as a last resort. Pray for more succesful research!

And with the stress of lyme and other co-infections and the fact that almost all meds affect blood sugar it is in constant flux. You must be slow to let your guard down.

I was not trying to scare you about my earlier mention of getting a glycogon pen..I was just trying to prepare you for the inevitable..
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For Milayla...Please do not be afraid. This disease can be a little bit hard to live with but with time and practice, you will be very good at it..

We have a friend that got type 1 diabetes at about your age. She had a very hard time at first..The meters were not very good and the insulin had to be mixed and it wasn't as good. She had many problems and was very afraid.

Her mother was also very afraid and cried a lot..But they both got better..

Then there was a time when my young friend thought she knew it all and would start cheating on her tests and not telling her mom the truth..She was in her teens and got very sick..So remember this is something you must be good at and never tell a fib about.

Part of her problem was that she didn't want to be different from her friends..Back then, diabetics were generally never allowed anything sweet and things like pizza and soda were not allowed..So she wanted to be like everyone else and told her mother fibs..
It hurt her very much but she did manage to get better..

She was able to get a pump and it helped her to be able to do almost everything that her friends can do..She also got very good at counting her carbs and figuring how to cover them.

And she started going to a children's diabetic camp in the Poconos..Some are better than others. She found out that she was not alone..That a lot of others had the same problem as she had and they were just normal kids..She liked the camp so much that as she grew she became a counselor. I think she still does this.

Her interest in her disease and medicine caused her to think about being a Dr or a nurse..So that became her dream..

She graduated at the top of her class and went into training to be a nurse..As of this December, she is a nurse in the emergency room at the local hospital..Treating others with bad injuries or medical problems.

You are a normal kid with some things that you do special..You will live a long life and will eventually just consider this a minor annoyance. And it is ok to cry..Somedays you just will feel like it..

Good luck and I know you will be fine..

Your friend, lymemomtooo
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God bless,

I will definitely keep you both in my prayers!

quote:

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Originally posted by lymebrat:

ask for prayers for Mikayla, as she is so scared right now
and prayers that I be given the strength, guidance, knowledge and faith I need to help me get Mikayla through this difficult time..

The more people praying for her, the better!

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I prayed to Miraculous Medal Assoc:

But I think I saw something once in the diabetic educators office about family camps which should work with younger kids.