For those who are not familiar with her story, my 6 year old daughter Mikayla was diagnosed with diabetes 2 weeks ago..

here is a link to a thread about it...
http://flash.lymenet.org/ubb/Forum1/HTML/034459.html

Mikayla ended up in the Emergency Room last night until about 2:00 this morning

Okay, where to begin.. I am so new to this that I feel like I am in a constant state of confusion...

I mentioned in my last post that Mikayla had her first real low on Thursday, it came on, without any type of warning, but we handled it well.

Yesterday ( Friday) I called the her PCP's office and told them that Mikayla had a slight fever (100) and wasn't feeling well. And that her sugar levels were going from the 400's to 70's.. And she couldn't eat , so I was giving her sips of juice...

She wouldn't even eat ice-cream.. and she loves ice cream.

I did check for ketones, and that was negative.. I tried all the helpful hints in the book I received, but nothing was working, she was simply so sick, that she could not eat and I could barely get her to drink...

And the insulin I gave her in the morning, was making her levels go low... and from what I understand, the sickness, was making it go high... what a balancing act...

The doctor on call said that this was a diabetic issue and that she needed to be seen by her diabetic doctor..

SO I called the only number I have for her diabetes doctor and got an answering machine..no emergency phone number or anything.. I was not impressed. So I left a message and called the pcp's office again.

The doctor on call again said that as she was newly diagnosed with diabetes, he didn't feel comfortable treating her and said I need to contact her diabetes doctor.

SO I told him that I couldn't reach her diabetes doctor..and he said that they were suppose to have an emergency contact 24 hours a day., so I informed then that all I got was an answering machine

So the doctor on call paged Mikayla's diabetes doctor and he called me back 20 mins later. He said that her body was probably kicking in insulin and that as she was sick, that her sugar levels would be erratic.

So we adjusted her insulin levels and he told me to continue to try and get her to drink fluids etc.

he also said that he would speak to her PCP's office on Tuesday, as she is their patient and if she is sick, that they need to see her right away..that "normal issues" such as avirus or cold were to be addressed by her PCP.

I spoke again with the doctor on call at her PCP's office and he assured me that she proably "just" had a virus and to follow the diabetes doctors advice...

SO anyways, I was not very happy with all of this. I couldn't believe that her PCP's office all but denied seeing her when she was sick as she has diabetes...until I spoke with her diabetes doctor...

And I was definitely upset to learn that I had not been given an emergency contact number to reach a diabetes doctor when the office was closed.

I expected them to at least have an answering service where a specialist on call would call me back...

I have an appointment with her diabetes doctor on Tuesday and I plan to make sure I leave with an emergency contact and plan before I leave his office. And then I am going to go to her PCP's office and make sure we are all on the same page...

okay back to Mikayla....

At 5:00 last night, Mikayla's temp went to 102.8 and she was refusing to eat or drink...

Her throat hurt and her head hurts so badly that she was crying

So I called the doctor on call, who as luck would have it, was the same idiot I talked to earlier in the day..

He said it was probably a virus, but if it made "me feel more comfortable" That I could take her to the hospital...

What a jerk, he acted like I was some idiot who was over reacting...grrr.

Anyways, we go the hospital's fast track..which is like a walk in type care, and she ends up in the ER.

She was mildly dehydrated, despite my trying to push the fluids..she was so sick, she cried for over an hour before we finally got to the ER.

Luckily I called my sister and she went to the hospital with us, so she was able to comfort Mikayla on the 45 min drive and hold her hand which helped..

Anyway, when we got there, Mikayla was dehydrated, but not enough that they had to put an IV in. The doctor was very frank with her and told her that if she didn't drink, they would have to put an IV in her and keep her in the hospital over night..

Well, we all know how she feels about needles, so she tried her best to drink.

Turns out that she has an ear infection in her right ear and he also thinks she has strep..but he didn't test her as his feeling was that it wasn't necessary to subject her to the swab, as the medicine to treat the ear infection, would cover the strep if she had it as well.

luckily, this ER doc knew alot about diabetes, and he answered all my sister's and my questionsn ( and we had plenty! ) and made sure we were comfortable taking her home, before he left.

I have never had an ER doctor take so much time with a patient. He rubbed her back and tummy and talked in a very soothing voice as he told her that it was no fun having diabetes, and that being sick with diabetes is even less fun..

he explained how her sugar levels react when she is sick and how important it is that I give her the insulin and that she needs to try to drink and eat a little something..

Of all things, we got her to eat apple slices... who would have thought? and she started to drink a little as well.

They put her on amoxycillian and I am giving her Tylenol/ibuprophen for the pain and fevers..

I felt like calling the doctor on call at 2:00 this morning and thanking him for his advice that it was probably a virus, and letting him know she had a raging ear infection, was dehydrated and possibly had strep...... I am so sick of ducks..

She still isn't able to eat much, but she is drinking. Her levels are high today, I'm told it's because she is sick....

But I did learn a few things this weekend..one is that I need to make sure that Mikayla's PCP's doctor and his on call doctors and her diabetes doctors are all on the same page and that I need to set up some type of emergency plan...

So if anything like this ever happens again, everyone will know what to do. Luckily it wasn't a dire emergency...

I am glad that I did some research and knew what to do if she got sick and that I was able to keep her diabetes in control ( not sure if that's the right word..) during her first illness with diabetes.

And I am glad that this wasn't a dire emergency as it made me very aware that had it been, it could have been tragic, as there was no emergency plan in place..

Also it made me aware that I need to make sure the school will also have an emergency plan and contact numbers in place as well.

From what I am told, if you have an emergency, you are suppose to leave a message on the diabetes doctor's answering machine and someone will call me back within 30 mins..

30 mins!!?? Eeek... I would have called 911 if i didn't think I could handle it...but still 30 mins to get back to someone???....

The reasoning is that the diabetes doctor said the child's PCP should be called..

But that doesn't work, if the doctors who are taking care of your child, don't communicate with one another on what to do with a child who has diabetes and is sick...

SO on Tuesday, i will either leave with ALL her doctors knowing what to do in case of an illness, or emergency...or I will find a new PCP and diabetes doctor.

I think having dealt with fighting so darn hard to get both my kids the medical care they needed to treat their Lyme, has given me the ability to stand up for my daughter and say this is not okay..

You are her doctors and you need to make sure you ALL know what to do in case my daughter is ill, or has an emergency..

I guarantee, I'll have an emergency contact and plan set up by Tuesday afternoon..never mess with a mother and her child!

Okay, I'm not sure if you will understand everything I wrote as I am running on no sleep... and I am exhausted...

Mikayla and Derek decided to sell all there toys, bikes, books, games, cars..etc they have out grown, in a yard sale this weekend and are going to donate all the proceed for juvenile diabetes research...

They thought of this all on their own and they both worked very hard this past week setting up for it..

They sorted everything into boxes or tables depending on price and made the decision of how much to charge for each item...

There friends even donated some toys as well..and Derek's friend came over today to help run the yard sale. They were both very good salesmen!

And when people met Mikayla and found out what she and her brother were doing to help find a cure for diabetes, there were plenty of tears in peoples eyes.... mine too.

And the Good news is that we made $240.00 today to donate to Juvenile Diabetes research

And we plan on having the sale again tomorrow (if I'm able to, I am running on fumes!) and next weekend as well. Our goal was $200.00 and we did it, ( most of the things we sold were $0.25 to $3.00...so we sold alot of things today!) And the kids are very pleased. And I am very proud of them.

Thanks again for being there for us and all the advice, and prayers..... They are working as Mikayla definitely has some angels looking out for her....

You said it all right there! Poor Mikayla...I hope she feels better VERY soon and I also pray you can get some rest very soon!

What a dear child and son, to work so hard for diabetes research! hats off to them both!

Hang in there, Mom!

bless you and your whole family...be well ,gary

And what thoughtful, giving children!!
It's obvious that Derek and Mikayla have learned "so much about living" from you.
I am so proud of them!!

I've been wondering how Derek was doing with all this going on with Mikayla.
Sounds as if he's doing pretty good.

God bless,

glad you'll get the numbers things all straightened out so you'll feel better on Tuesday..youll get used to this.honest...

doing a a great job thoguh...

One thing you will come to realize, if you haven't already, is that it is ALL UP TO YOU. You can never count on any one doctor, nurse, teacher, aide, etc. The professionals will never completely be there for you reliably enough for you to ever fully let down your hair, relax, and think, okay, it's in someone's hands who knows better than I do.

I had a terrible argument with a paramedic who responded when I dialed 911 after my son was prescribed too much lantis insulin by my son's ex-diabetes doctor. My son had a grand maul seisure. I couldn't get any sugar into him and I had trouble finding my glucagon because we'd never used it before, even though he'd had diabetes for ten years.

The EMT people who arrived wouldn't even help me hold him down so I could give him the glucagon when I did find it. They actually took their hands off him in an exagerated way so there could be no future law suit I guess.

Then, after the glucagon was in and the paramedics finally arrived, (they got lost) the paramedic insisted on doing a blood test. I told him my son was obviously low, but he insisted. He apparently didn't wipe my son's fingers off well enough. I'd been trying to get some maple syrup onto his tongue before he seized. The reading was 800. This man was ready to call DSS. If my son had a seizure from being that high, he said, then he'd been neglectfully high for a while.

He then forced my son to stand and tried to make him walk to the ambulance! I told him my son wasn't even fully conscious yet and this guy glared at me and tried to have a conversation with him. I finally pushed the paramedic out of the way and picked my son up, saying I knew he was low and the walk to the ambulance could make him seize again.

This jerk said, "Ma'am, if you don't mind, this is my job. I'm a professional"

I've never forgotten it. Did he have to regulate a child's blood sugars at two in the morning with a kid throwing up? No.

I told him that in fact I was the professional here and told him to clean my son's hand off better and retest him. He did. My son read 82, after a full vial of glucagon.

Never let your guard down. Learn it all. And when your gut tells you something different than the "professional" is telling you, listen to it!

I can't believe your doctor had no emergency number. I'd find a new doctor as soon as you feel capable of dealing with the search.

Another reminder that we have to be responsible for our own medical care.

You are a wonderful advocate for your daughter.

Romans 5

��1 Therefore, having been justified by faith, we have peace with God through our Lord Jesus Christ,

�2 through whom also we have obtained our introduction by faith into this grace in which we stand; and we exult in hope of the glory of God.

��3 And not only this, but we also exult in our tribulations, knowing that tribulation brings about perseverance;

���4 and perseverance, proven character; and proven character, hope;

I have also had to deal with many emergencies and with the no help from Drs crap..One thing that has helped is that our endocrinologist is in a big practice and almost all of the time, they have coverage with a live person or the answering service gets one of them immediately..

The problem is that it is not always her Dr so they give a general protocol..But once, a Dr went to the office and got her file..

NO matter what happens, it is up to YOU..Sorry..But you will learn more about what is happening than any of the professionals and will learn when to catch a problem.

All meds and colds, etc have an effect on blood sugars, Lisa is correct. If you really read the flyers with prescriptions, in the fine print they often mention blood sugars, or diabetes.

WE have been told to cut back the long acting insulin if there is a problem but you will need to have your dr plan this.

And if you are not getting the help you need from the endocrinologist...Go elsewhere if you have that option..Our current one is a pediatric endocrinologist that works at the local facility and also at the major trauma hospital..

And if possible, get the strept test..It will be important down the road if she has trouble..ie, we could get help from PANDAS, if we had gotten a positive..

I've found too that I have had to make sure EACH of my drs. receipt medical records/labs/xrays done on me, and sent by the dr. doing these things. The left hand doesn't know what the right hand is doing.

My MD was going to have me take blood tests that were just done by my LLMD!

Opal, thanks for sharing your experience & expertise w/Missy & all of us reading this post. Yes, you do have to stand up to these jerks when needed. Professional my foot....

Sorry to hear you guys are going through so much. I can't imagine what it is like, having lyme and kids with lyme is a job in itself, never mind this on top. I hope things get easier the more you learn.

Make sure to get some rest and take care of yourself too, I know it is hard as you are probably running on adrenaline since this started.

Your posts about the challenges you have with your health & your childrens' health always seem to bring tears to my eyes.

You have such a strength - even when you are too tired to see it yourself. I can not imagine now how you deal with it so well!

You hit it head on when you said
"never mess with a mother and her child!"

You have the fighting spirit that it takes to keep your children on the road to wellness, and you are truly an inspiration to others dealing with the same issues.

I feel like I'm doing well to keep me alive & 'getting' well - it's hard for me to imagine how much strength & determination it takes to take care of children who are also chronically ill. I know it's by the Grace of God that you somehow find the strength to keep on going during those challenging times...but you are the mother tiger - ready to do what it takes to protect your own. I DO understand that.

I feel like I'm rambling.

The last time I read one of your threads - the kids had scarlet fever. I take it they came through that all OK, and there's no permanent problems? I want you to know that I said many a prayer for them and you.

And I want you to know that my prayers continue - not only for their health & yours - but also for your increased strength to endure the challenges that come your way.

Many blessings,

However, the positive message is that in time, you will have the ability to be self-reliant with Mikayla's diabetes- and won't need the MD's so much.

The best way to acquire the knowledge you need is the day-to-day experience of dealing with a variety of situations that come up. Sickness, exercise, excitement, seasons, weather, meds, foods, moods, and so on.

It takes about 3 months to feel like you know what you are doing, and after 6 months you will really feel expert.

I can't emphasize enough, despite the criticism I received, that doctors and nurses will not give you the information you need.

Buy books (Diabetes Mall), go online (JDRF, ADA, Children with Diabetes). The best education for me was magazines: subscribe to them ("Diabetes Health" in San Francisco, "Diabetes Forecast" of the ADA, "Countdown" of JDRF, and Diabetes Self- Management. Diabetes Forecast is excellent, and Diabetes Health is my favorite (sort of activist).

MIkayla will have individual responses to thing that you will need to inform the MD about, not the other way around.

This is trial and error and only you and MIkalya can do it. Keep records in a way that you can review at the end of each day, and at the end of each week, to assess patterns and make decisions.

This is not to say that even after 10 years you won't ever run thigns by the doctor, or even check with him/her just to keep yourself covered, so to speak. A mnthly or bi-monthly appointment usually involves a lot of good interaction, but you will bring most of the information to it.

There's no other illness liek type 1 diabetes, in terms of the amount we ahve to do ourselves for our kids, or that hey ahve to do themselves when they are older. The level of self-care and knowledge required is unmatched by any other chronic disease.

You guys are on the road, just keep going!

I love the yard sale idea...way to go mom you are raising some really smart kids there.

It burns me up that we have to watch everything with our kids. Hard to have faith in any one with so many ducks out there but thankful you got a great Er Dr.

As always ya'll are in our prayers and big hugs coming ya'll way.

It breaks my heart to hear about your troubles. What a brave family you have!

If you can somehow find a minute, you should get a book called "Infectious Diabetes" by Doug A. Kaufmann. I had to order it over the internet (Amazon, I think) and am currently reading it as my sister is a diabetic.

Although I'm only half through, I can tell you that it implicates fungi as the original cause for diatetes along with other co-factors...... not too much of a stretch for us with Lyme.

Although you have alot to do right now, reading this book might help.

Blessings to you and your family.

Sorry it has taken me so long to post an update..it's been a hectic few weeks...

Thank you all for all of your support, concern, prayers and advice, I truly appreciate it!

I wanted to let you know that Mikayla is doing much better. Her ear infection is almost gone, she has a little redness, but no discomfort.

Her sugar levels are starting to become a little more regulated. Her numbers are now ranging from 80- 200. She does still tend to feel low, if the number goes below 120.

I'm told that things will get a little easier in time.

Mikayla started back to school last Friday..I was a nervous wreck. Luckily, one of the school nurses there, was a nurse I had when I went to school and she invited me to spend the day in the nurses office with her.

I had planned on reading a book in my car for a couple of hours, just to make sure I would be readily available if needed and she suspected as much and suggested I spend the day with her.

She knew I would be nervous and had a place all ready for me to sit, she ordered my lunch and had a stack of enrolment forms for me to help organize...all before I even went to her office that morning..she knows me well.

Anyways, Mikayla had a good first day back, but I think it may have been too much for her as she slept much of Friday night and took several naps on Saturday.

I kept her home on Monday as she woke up low ( 80) and she had a headache. She remained under 100 for most of the day despite snacks, and meals. So we adjusted her insulin levels.

She went to school yesterday and felt low at 11;15, she read 125. at 12:00 she was down to 96. After lunch she was only up to 119, and still felt low.. so we adjusted her levels again..

I kept her home today as when she woke up, she was extremely fussy and cried for over 30 mins, before I could get her calm enough to give her the insulin shot and eat a little breakfast.

She said for the first time, " I HATE this !!!!!"

..she hates waking up every day, knowing that she has to have a shot every morning and every night.

The night shots don't bother her so much, as she has had most of the day to play and be a "normal" kid. But the morning ones really bug her.

As soon as she wakes up, she is immediately reminded that she is sick, as she has to have her shot.

Most days she wakes up and within 15 mins, she has to have her first shot.

I have to admit, I hate it too. I told her today, that if I could, I would take her illness from her and have it myself. And that I would rather have 100 shots in my own arm, than have to give her 2 a day.

And she started crying again, saying that she didn't want me to get diabetes and that she'd rather have the shots than me. Then we hugged for a long time and talked about how we could make getting the morning shots a little easier.

We are going to try to wake up a little earlier ( which is hard as she gets up at 6:30 for school already) and have some fun time, stories, cuddling in the chair, whatever she wants to do for a few mins, before she faces the needle.

Also, when I called her diabetes educator today, I mentioned how tired she is and she said that Mikayla's body ahs been through alot these past few weeks and that it is taking a toll on her.

And that maybe going to school for the whole day was just too much for her right now. So we are going to try a half day for the rest of the week.

Mikayla slept form 11:30 - 2:00 today and was still tired when I woke her up to check her blood.

So I am hoping that by going to school for the half day, that she will feel more rested.

Well, that's about it. She is doing better and we are constantly having to adjust her insulin levels at this time as she keeps getting too low, but we're hanging in and I am very proud of her.

Oh, I almost forgot we ran the yard sale again last weekend and hope to do it again this weekend.. and

Mikayla is celebrating her 7 th birthday in 2 weeks and she asked her grandparents and uncles and aunts, to donate money to the juvenile diabetes foundation, instead of birthday gifts for herself...

I was amazed. I don't know of many kids her age who would have thought of somethign like that. I know when I was 6 years old, I sure wouldn't have...I am constantly in awe of my little girl and her remarkable kindness...

Okay, I have to check her levels and get everything ready for school tomorrow. I just wanted to check in and let you all know how she is doing.

Thanks again,

Missy