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» LymeNet Flash » Questions and Discussion » Medical Questions » My 6 year old daughter, was diagnosed with type 1 Diabetes today... I'm a wreck!. (Page 2)

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Author Topic: My 6 year old daughter, was diagnosed with type 1 Diabetes today... I'm a wreck!.
lla2
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deb,
it's an excellent one. One I'm going to print and keep in my files for sure. thanks for bringing it to my attention. We have very strong nurse's association here in RI that is very dedicated to the proper treatment of diabetic children, so i'll be bringing this to their attention as well.

thanks ..and hope things are going well missy

continuing to keep you guys in my prayers...

Lisa


Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002  |  IP: Logged | Report this post to a Moderator
Lyddie
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Please note that this article, which is dated 2005, lays out a plan for diabetes in school that depends on "an adult or backup adult," not necessarily a nurse.
For insulin and glucagon administration, this conflicts with our state DPH regulations.

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).]


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Kara Tyson
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Lyddie,

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).]


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lla2
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we don't as nurses make any judgement calls about insulin doses. the medical management plan,made up by the dr has VERY specific step by step gu=idelines telling us what to do and how= much insulin to give for each ml over the child is with their blood sugar level etc..for every possible scenerio with each child.

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).]


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Lyddie
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Some children need to test 12 or more times a day. Testing is not a shameful, offensive, or dangerous activity, as you suggest. The blood drop is miniscule, and contained in an alchohol swab, the lancets are capped and put in a sharps container, and various other protocols are followed.

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!


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lla2
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I hope you're not talking to me about the testing being shameful etc...? I don't know whre you would have gotten that out of my converstation...YOu have to remember that many times children also have other reasons that would make them unsafe to test in the classroom as well, like seizure disorders etc...so I didn't go into all this, but it is part of hte whole picture that I look at every day.

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).]


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Mo
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I think..if I may say..from where I see it..

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).]


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Lymetoo
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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


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Lyddie
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I am reediting this because so many posts keep coming up while I am writing! Thanks Mo, your're eloquent and clearer than I have been about the general principle.


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).]


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lymebrat
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HI Everyone...

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


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lymebrat
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*** UPDATE***

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


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lla2
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missy what are her snacks? for her to go up so quickly I"m just curious? also does she have a gluten intolerance? sometimes when those two are combines the blood sugars rise twice as fast, so if she ate something with gluten in it as a snack ,her bs would have risen even quicker.

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


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lymebrat
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mmm..

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).]


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lymebrat
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Hi Lisa,

Okay I'll try...1...2...3... breathe...

Thanks for the post, you have been a great help this past week!

I am keeping a detailed food diary of every morsel of food that goes into Mikayla's mouth, including the cabs, sugar & sugar alcohol.

The nutritionist is meeting with us for an hour on Tuesday to go over the food diary and see if there is a correlation between the food she eats and her sugar levels.

I checked her food diary for last night when her levels went up so quickly..

at 5:30, I gave her 2 units of Novolog and 3 units of NPH.

Her sugar levels was 406 just before she got her insulin and ate dinner.

She ate 2.5 oz of lean hamburger, 1 slice of bread, 1tsp. ketchup, 1/2 cup potatoes, 1/2 cup of broccoli. And for dessert she had 1/2 cup bryers sugar free ice cream ( which was approved by the nutritionist as it only has 10g carb and 4g sugar)

Her sugar level at 7:30, 2 hours after eating, was 301.

Okay around 8:00 last night, i noticed her checks were red and she wasn't acting herself, so I did her level..290 ( the lowest it's been) So as she was hungry I gave her a bedtime snack.

I gave her a 1 oz.cheese and 2 sugar free cookies =( 8g carb 0 sugar and 3 sugar alcohol)

I have given her this same snack before as the nurse said to give her a snack before bed time and approved of this, and her levels never jumped like this..

Okay so when I checked her levels at 8:30, it had jumped to 458 and when I checked them 15 mins later it was 480 and 15 mins later 487..

Mikayla was acting okay, just a little fussy. When I checked it again at 12:00 it was down to 448

and when she woke up at 6:00 this am it was 317, which is give or take a few, the same as she has been the past week.



Today before lunch it was 391..2 hours later 420.
Before dinner 523 ...2 hours later it was 366

and when I checked it at 8:00 it was 278. ( a new low)


So I have no idea why it keeps fluctuating like this, but I was told not to worry too much about the numbers..to treat the symptoms.


And when she gets fussy or agitated and even though her levels are almost 300 to give her a snack...

So I am hoping I am doing everything right..it seems like the more I learn about this disease, the more I second guess myself..lol!

Mikayla and I have been camping out in the living room this past week and tonight Derek is going to join our little slumber party.

Derek has been a great big brother to Mikayla, but I have noticed that he has been feeling left out, so I want to make sure I include him on the fun things as much as possible.

He is trying to work up the courage to have his finger pricked as Mikayla wanted him to have his level checked... just to make sure he is okay, but so far he hasn't done it..he hates needles even more than Mikayla.. if that is possible

Thanks again for all the help!

~Missy


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Kara Tyson
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Lymebrat,

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).]


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lla2
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missy, the only thing I see on that list is the ketchup...that would have sugar in it..but everything else i'm sure would have been approved by the nutritionist.

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).]


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Lyddie
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Lymebrat. I wrote you a long post last night but deleted it by mistake. I am really glad that you have found this thread helpful and not too much.

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).]


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lymemomtooo
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LB-continue to hang in there..It will get better... occasionally...

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.


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lymebrat
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Hi Lisa

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


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lymebrat
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Hi Lyddie,

*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


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lymebrat
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Hi Lymemom,

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


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lymebrat
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Hi Lymemom,

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


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lla2
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hey 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


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Lyddie
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So much of this information is from the dark ages. It's really scary, but I understand that you can't tell the difference right now, and need to go by credentials.

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).]


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lymemomtooo
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LB...Keep hanging in there...It would also be good for you to find some key friends to carry thru with you..THis trip with it's winding path is full of many detours and potholes..You will need some loving friends to be there..Make time for them and trust them even though they may not understand it all..You must keep yourself healthy..

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.


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Lyddie
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For anyone else dealing with type 1diabetes, I just read a review by the American Diabetes Association on the importance of good blood glucose control in the hospital, where patients should be under 110 in intensive care and before meals, and below 180 after meals.

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.


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lla2
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I think you''re making a lot of generalizations here... every doctor knows what is best for their own patient. some doctors who have patients with histories of seizures do not want their patients to go below 150 for they can seize easily etc...

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


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Lyddie
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The review that I quoted is taken directly from an American Diabetes Association publication. I'm not sure why you are so defensive about this, since I have repeatedly complimented your care. I said "most" not all schools, but I stand by the general principles that I outlined.

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.


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lymebrat
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Hi Everyone,

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



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Lyddie
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Missy, Just to clarify, my comments about tight control do not apply to your current situation! It does sound as if her blood sugar levels are starting to reset, and it is good that she is in the 200's not the 400's. Congratulations! Anything else I have posted is for you to have later, not now!

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).]


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lla2
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missy,

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


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Opalwitley
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Hi everyone. I'm a new poster. I couldn't help reading this thread though because my son has type one diabetes as well.

I was reading Lisa's last post responding to the person's post right before it. I was thrilled to read that first particular post because I couldn't agree with it more. Lisa, I'm not sure what generalizations you're refering to. I thought that post was very informative in an impersonal way. Please understand that the following is my own, personal experience with multiple school nurses in just one school system. When I say "every nurse" I am refering only to every nurse in my own, limited experience over the ten years my son has been in school.

I have to say I've been treated horribly by our school system's nurses. I have found over the years that without exception, each one taking care of him has proven to be more concerned with her own liability than in trying to keep my son's blood sugar around 120 where it belongs.

By keeping his numbers down, they insure that he can read the black board, concentrate, learn, and have a normal day like anyone else, but they also run the risk of him running low if he's not watched carefully. Nurses want to run him higher so they don't run that risk.

The result has been catastrophic for his learning. By running him in the low 200s all through grade school he ended up staying back and needing extra help.

His doctor has fought valiantly on his behalf, and so have I. Now he is 15 and can pretty much manage his own blood sugar, and he and I talk via cell phone keeping his numbers where they belong.

In the past we've endured (and had fired) nurses who, for instance, tested my son's blood sugar every hour till his fingers were so calloused they wouldn't produce blood anymore and she still ran him in the 240s. Another nurse ignored protocol and forgot to snack him when he was 80 at a time of day when he was usually 190 and always dropped 100 points. He collapsed in the hall, tested himself, and was 30!! A teacher, seeing him there and apparently forgetting about his diabetes despite extensive training, said, "Are you taking a nap today? Get up and get to class!" He was able to utter, "I'm 30" while struggling to open his juice. The teacher said, "30! 30? What does 30 mean?" His best friend ran to him, made him drink the juice, then ran to get the nurse who walked calmly to the scene and defended herself indignantly when told she did something wrong.

Another nurse gave him a shot to bring his blood sugar down at the end of the school day when he was walking home alone. She did this AFTER I called her the day before saying he'd been running LOW all week and could she please FEED him at the end of the day. He collapsed on the way home and was rescued, once again, by a fast thinking friend.

I had a nurse give my son so much insulin one day that his blood sugar was 75 at the end of the day before play practice AFTER he'd eaten three ice cream sandwhiches from the vending machine. I went on to give him a total of 106 carbohydrates over the two hour play practice (roughly three times the carbs in his dinner time meal at that time) and he never read over 80 the whole time. What would have happened if I had skipped going to his practice that day? And why did I have to go? Because the school refuses to provide a nurse to cover after school activities.

No, the nurses who've been hired to protect my son at school have been one long nightmare for us. I'm thinking maybe it's different in other schools. But we have experienced no less than ten nurses hired and then subsequently let go who were hired just to deal with the diabetes and who failed to do it safely.

I'm not writing to scare anyone. Just to say that you have to stay on top of things if you are the parent of a diabetic child. You can't decide to run your kid's blood sugar high just to insure he won't have a low only because you don't want to test often enough. High blood sugars will insure bad health or death later on. We can't just say we'll run them 100 points too high so the school nurse can keep up with her paperwork or so we can get some sleep at night.

The other thing our school did was to put my son in a kindergarten class with a teacher who had diabetes too. He had let his bloodsugars run wild his whole life and admitted as much. He was in a wheel chair. His hands were crippled so badly that he could barely turn the pages of the books he read to his class. He suffered multiple opperations on his legs that school year. He later died. On a trip to our town's transfer station my son saw his teachers wheel chair disguarded in the metal pile. He burst into tears and insisted we take it home. We have it to this day. There were four kindergarten teachers at the school. Was it some kind of sick joke putting my son in with that one?

This is just our school system. Maybe others are better. But stay alert. It's a hard battle, and not everyone is on your side.

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Opalwitley
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I think the reason kids who are kept up at 200 all the time might "do poorly" when they're made to keep their blood sugar in a healthy range is because they're bodies have been abused for so long they feel "funny" when their numbers are where they're supposed to be.

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?


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lla2
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that's too bad you had such a bad experience with your school nurses. YOu should definetely be able to depend on them while your child is in their care..they are your lifeline...

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).]


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Mo
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Great job with all this, how overwhelming it must be, Missy.

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).]


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Lyddie
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Mo, thanks for the thoughtful post on behalf of Missy and Mikayla. I do need to clarify that TIGHT CONTROL IS THE STANDARD OF CARE. Anyone can check this out with the American Diabetes Association and also with WHO.

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).]


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Mo
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Oops --
sorry, Lyddie..that came out wrong..
I didn't mean it was alternative, glad you clarified that..I meant to say it general practice and management seems not to have caught up with the latest scientific/medical findings yet, and they should.

I'll try and edit that..

Mo

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


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Kara Tyson
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Lydie,

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).


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lla2
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We follow both the endocronologist's and the parents orders here at our school together..maybe that's why it works so well here..we all work as a team.

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


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Barrie
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I can only imagine how overwhelming it is for you to be dealing with all of this,especially with your husband out of town. I want to give you some hope that your daughter will lead a very normal life. I am at school right now as the nurse and as I was reading your post,my fifth grade diabetic student came in. He is totally independent,tests his own blood glucose and together using the sliding scale, figure out how many carbs he will be eating and bolus him accordingly and he is off to join the rest of his classmates. That all takes about two minutes. Your daughter will get to know how she feels when her blood sugar starts to drop and the feelings she has when her blood sugar is high. She will start to know when she needs to test her blood sugar. It may take a little time for all of that to happen but, it will and your daughter will be able to live a "normal" life. This student is so used to the finger sticks that his parents test his blood sugar during the night when he is sleeping and he doesn't even wake up. Earlier,this same student came to me because it was another student's birthday and he had a brownie and a lollipop,we figured out the carbs and bolused and he ate the birthday treat like every other student in his class. He has a pump which is just wonderful. When your daughter is able to get one, they are just great and give the kids so much more freedom. I still remember the time when we regulated insulin doseage based on urine test. We have come such a long way in not too many years. With stem cell research, we are really just about ready to cure type1 diabetes. It really is just around the corner. I am confident it will be cured in my life time. I am amazed at how well the children adjust,most times better then the parents. We have little second graders who with a little help manage a lot of their own care. Just one more thing,when she gets into school and takes test. Get her a 504 that allows her to test her blood sugar before test. Most of our diabetic students have some type accomadations for test taking. Didn't mean to give you one more concern but, just keep it in mind for the future. I know you are feeling so many different things right now. It will take a while to get used to everything and right now is a time of big adjustment. Best of luck to you, your daughter and your whole family.
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GiGi
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I don't have time to read all that has been said and alternatives or complementaries may have already been mentioned.

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.


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Lyddie
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re insurance, BlueCross/BlueShield has always covered 350 test strips/day, no questions asked. They recently changed it to 300, but anyone could get more with a doctor's letter. In teen years, 300 is fine for us.

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).]


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Kara Tyson
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I think one thing which may be helpful with school is to demand to see the qualifications of the school "nurse".

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.


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lla2
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kara that could be true also..

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).]


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Opalwitley
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I, too, have had no trouble getting insurance to pay for all the test strips my son uses. The first couple of years we didn't get them covered for some reason, but then after that we've had no trouble.

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.


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lla2
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accoridng to state law, if YOU go on the field trip the nurse does NOT have to go...something to think about...as long as the parent is in charge, then the nurse doesnt' have to be..

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).]


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lymebrat
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Hi Everyone...

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..



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Lyddie
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I am editing to clarify that this is not in resonse to Lymebrat'spost, but to the one before. This thread is so active, that it gets confusing!
_______________________________
Ila, for my daughter, the care needs to be flexible. I mean that the adjustments need to be adjusted. For instance, my daughter and others I know would take more insulin for a specific high in the morning than in the afternoon.
Some days, kids just run high or low for no apparent reason and doses need to be adjusted. Often, there will be insulin resistance for no apparent reason, requiring much more insulin (sometimes triple), and we will find out two days later that she is getting sick. Menstruation throwns things off. Sometimes there was a soccer game the night before, and insulin needs to be decreased. Etc.

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).]


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lymebrat
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Hi Lydie,

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).]


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Lyddie
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I am editing here to add that my last post was not in response to your post, Lymebrat, but to the one before it. This thread is so active that it can get confusing. If you have a chance, go back and read your last 2, Ila's post, and my last one and you will see what I mean. I didn't see yours until just now (Thursday afternoon). The comments about flexibility were not meant for you...here is what I wrote you this am, please read the ending!
________________________________
Hi Missy, Noone is posting to suggest that you do tight control right now. PLEASE understand that a lot of this thread was for your future reference, and it got sort of out of control because a lot of us were discussing issues that you should not have to deal with yet.

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).]


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lla2
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.

[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).]


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lla2
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.

[This message has been edited by lla2 (edited 27 May 2005).]


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lla2
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HOw 'bout we let missy follow her own doctors and nutritionists guidelines for her daughter at this point. they don't seem at all worried about high numbers, especially like 160 etc...so that's what is right for mikayla right now...
they know best!!

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).]


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lymemomtooo
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LB..I completely know where you are coming from with this...."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...."

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


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lymebrat
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Hey everyone,

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


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lla2
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HI 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 [email protected]!

lisa


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Opalwitley
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You're getting some great advice on this thread.

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.


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lymebrat
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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..

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



Posts: 3154 | From NH , USA | Registered: Oct 2002  |  IP: Logged | Report this post to a Moderator
Opalwitley
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Missy, you have my utmost sympathy. I've been dealing with this issue and the school for many years now, as I've stated in previous posts. Here's a few suggestions you might find helpful.

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.


Posts: 7 | From rockport, ma, usa | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
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