Thank you!

here is the psot...

Hey Everyone,

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....

I also know that several of us came down sick at work at the same time with the same symptoms. Two of them were told that they had diabetes.

I do not know enough about diabetes but it made me wonder if something else was going on.

keep fighting with dr.s i have had dr. stop my treatment in the middle of iv treatment because of insurance companies. i too ended up in er to get my line flushed.

have faith and keep fighting.

you have lyme too, right? you have to take care of yourself too. exhaustion is like a spark to a torch (at least for me). please be careful and ask your family for help when you need it. even a meal preparation once in a while is a big help.

i don't know what to say other than i am praying for you and your family. please continue to keep us posted as you can, i don't venture to medical.

i am so proud of your kids.

I spoke to my student's mother about your
daughter, and she said it is a real balancing
act. Sometimes if a child is too active with
diabetes, they become hypoglycemic later in
the day. She said adding insulin can boost
too high and then, you have to level things
out with diet.

She just an episode with Tony in which his
levels dropped to 40, so she forced juice
into him. She said sometimes he can get
combative and it is hard to get the juice
down in the those instances.

I am so sorry for both of you. I hope that
once the infection dies down, her levels
will stabilize. The doctors stink--no one
ever takes charge....

to erin: just so you know next time...when achild drops really low like a 40 or something under 70, just give them a juice from the cafetereia. oj works great..if you give them pnutbutter and crackers , the carbs actually slow down the rise in the blood sugar and it will take a long time for the 40 to come up to where you want it to be again, which is over 80, preferably over 100 again! Just a hint I've learned over the years!! carbs of any kind ( crackers, pnut butter etc...will make it take forever!! to bring blood sugar up!!!) great job tryign though..thank goodness they had you there!!!

Hang in there missy...things will get better