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

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

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

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

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

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

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

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

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

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

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

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

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.

Thanks for the posts!!!

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

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

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

I am very proud of her.

Update

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

She is a sweetie...

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

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

Thanks again for everything..

God Bless,
~Missy

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

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

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...

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

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

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

best,
Lisa

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

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.

I'll try and edit that..

Mo

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,

Medi-Herb Gymnema is used successfully as are other products containing gymnema. It's the first thing my doctor pulls of the shelf for testing on a patient that has been diagnosed with diabetes. It seems to benefit both I or II. There are other products/manufacturers. Do search the internet. She ayurvedic suppliers have lengthy articles on all. Do a search on "Gymnema" and you will find lots of info. It has been used for centuries. So has cinnamon.

Lyme and microbial infections can affect all the various hormone producing glands. So does heavy metal toxicity and other toxicity passed down in utero, etc. All needs to be looked at and ruled out. Anyone coming with diabetes to see our doctor, first thing besides addressing Lyme, is "clean-up-the-body" time, and that usually puts people miles ahead in a number of ways.

Be calm, and take care.

I checked with our pharmacist when I went in for something, and he said that in our state, ALL insurances, including Medicaid, cover test strips. Lisa, if this is not true where you are, that is a great advocacy project! They are indeed very expensive, more than $40 a box.

A call to the American Diabetes Association might be helpful for anyone who is having trouble getting strips covered. I know that the ADA has done a lot of advocy work on this topic.

Lancets, swabs and glucose tablets are not covered however, but aren't too bad in price. Hope this helps!

Each state is differant and some states have no standard--http://www.nasbe.org/healthyschools/states/Pre-service%20School%20Nurse.html

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).]

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.

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

First, let me give you all a quick update...

It seems as if Mikayla's body is kicking in and making it's own insulin from time to time and it is making our situation even more confusing..

just when I thought I was getting the hang of all of this, I am having to call the diabetes nurse or educator to figure out new insulin dose..lower this one a unit..increase this one a unit...

Auuughhh...I wish the darn pancreas would either work full time or stop sputtering insulin willy nilly and confusing me and making my daughter get highs or lows.

Yest. she was averaging 160's to high 200's. And she was doing great. Then last night, she was in the 500's..

Then in the middle of the night, she was restless and as I was sleeping right beside her, I noticed this right away..

She was kicking her blankets and was so sweaty that her hair was wet. Her sugar was now under 200... so maybe her pancreas kicked in?? I don't know, but it sure is confusing...

Today she was doing well in the 160's and it dropped to under 160 and BAM! she was symptomatic of a low....

So as you all can imagine ( and have probably dealt with) this is very frustrating and scary for both myself and Mikayla.

I of course called the doctor and we readjusted her insulins and will proably have to do this daily until she gets over this honeymoon period...

I talked to our school nurse today to get some input on Mikayla's new health care plan and fortunately like Lisa, our nurses are very caring and well informed about diabetes

and I truly feel confident that between myself, the doctors, diabetes nurses and school nurses, that we will be able to help Mikayla maintain a healthy sugar level and lead a happy "somewhat normal" life....

The school nurse said they will give insulin to Mikayla if she needs it, but can only give what her health plan calls for...

The health plan seems very detailed and has them giving Mikayla a snack in the am..a snack before gym class, they will check her levels as directed by her plan...etc.

They are managing 2 other young children with type 1 diabetes and are going to introduce Mikayla to them when she is able to go back to school, so she can talk to other kids who have the same illness as she does.

I have to admit, I'm a little nervous about putting my child in their care, but hopefully as her teacher has dealt with a child with diabetes before, and there are only 13 kids in her class... and the nurses seem knowledgeable about this, she will be in good hands... I will pray on this!!!!!

Oh, and before I forget, I just wanted to clarify this...

opalwitley said:

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

Just to clarify for everyone, I am not keeping Mikayla above 160 as I am afraid of a low.. I am trying my best to keep her from passing out..

She get dizzy and starts to become disoriented below 160 at this time..

We are only 12 days into this ordeal and her little body has been through one hell of a shock and is simply unable to go below 160 without serious symptoms of a low blood sugar..

So in our case ( and I'm sure not all kids fit the magic number, for reasons we may be unaware of) I am treating her symptoms not her numbers.

This is what I MUST do inorder to keep her from passing out.

I have learned so much these past 12 days and I still know so little. i know that there will be a day when Mikayla is out of the honeymoon period and her numbers will be easier to regulate as her body won't be kicking in it's own insulin to mess with my mind

And I'm sure when that day comes, i will be back here rereading all these posts about tight control and everything else, but like Lyddie, mo and Lisa have stated... right now, I need to get through this stage before I can even contemplate anything else.

About the strips My insurance company will pay for 200 strips a month..if we need more ( which I do, as I have 2 meters, one for me and one for the school)supposedly all I have to do is have the doctor call the insurance company.

Plus our insurance company is even paying for the syringes, and lancets. Phew!

I was also wondering if you could all tell me how long it was until your child could go back to school? Believe me, i am in no rush, but I was just wondering...

Mikayla is in a play next week..she is a ladybug If she's not back to school yet, maybe I can bring her in just for the play..

Okay, that's about all I can write for tonight... I have so many more things to say, but I'll have to wait until my fingers work better. I think I am having a relapse as my right hand is killing me and this usually happens when I relapse...

Thanks again everyone!!!!

~Missy

p.s Barrie

Thank you for the encouraging post..

Our doctor wrote the school a note saying that rigid formulas aren't safe or effective.

The school nurses are not allowed to do the adjustments to insulin that are needed, and that is what this last poster is also describing.

I know exactly what Lisa is talking about when she talks about medical management plans, and I understand the adjustments nurses can make with sliding scales, adjustments for highs, food to carb ratios etc.

But it is a real problem that these are written down essentially in stone, and the nurses can't change anything from day to day.

Doctors aren't available for calls from thousands of school nurses! If formulas need to be adjusted frequently, then the only option is the parent.

For my child's health, I therefore have taken calls for years and direct her care from home. I would also, like this poster, prefer that a nurse be able to assume responsibility for thinking about doses rather than just following orders like a recipe.

Noone is saying that this is the nurse's fault. We are just saying that the system doesn't work at all for this disease, at least for the latest methods for dealing with this disease, which demand flexibility.

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

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).]

.

YOu'r e doing a great job mom...keep up the good work!!

.

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..

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.

If mikayla ends up with strep expect her sugars to be all over the board..that's perfectly normal..don't try to figure out why...the body can't seem to regulate the blood sugars when a child is fightiing off an infection at the same time..just a heads up...

about coming back to school..everyone is so different. I have kids that take weeks to adjust and find a comfortable 'zone' where their blood sugars aren't jumping all over the place so their docs and their parents feel it's comfortable for them to come to school, even for a 1/2 day to try it...then I have kids who come in the next week, who have already adjusted to the insulin and are staying even around 100 and doing fine .

you never know. each child is different. I'd take her to the play. that would be fun for her. Remember when you do bring her back to school you're only a phone call away, the nurse has all your and the doctors orders, yuo can leave very clear instructions for hte nurse to call abot EVERYTHING, and YOU can call every hour to check on her. I have parents that do that for hte first few weeks just to make sure the child is ok..and I make it a point ot check and see how those kids are doing in the classroom.

YOu can also start slowly, just have her come in for 1/2 a day too..see how she does..take it slowly...

see what you and your doc feel is best for mikayla..you guys are in charge of her adn are doing a great job so far!! SHe's lucky to have you!@!

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.

Today started off just like any other day this week, with waking Mikayla up, doing her blood test, giving her insulin and eating breakfast...

I gave her a snack around 8:30 am as she was hungry..

Then around 9:30 this morning, I was combing her hair to get ready to take her to play practice at school, and without any warning, she said

" I feel a little wea...k"

As she finished the word weak, she began to lean/fall forward off the stool!!!!!..

SO the first thing that ran through my head, was a low.. even though she had eaten a well balanced breakfast and had a snack less than an hour ago..

I quickly checked her blood and it read 60... I did it again..61...

I have been dealing with highs of 200- 600's the past 2 weeks, so I have had no experience in what to do when she gets this low...

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

Then I called the diabetes nurse and as luck would have it, she answered the phone.. She told me I did exactly what i was suppose to do and stayed on the phone with me while I rechecked her levels to make sure it would climb to 80.

It did! And I truly could not believe how quickly Mikayla bounced back from this very frightening experience..

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

I have to say, even knowing that she could have a low, didn't prepare me for this...

I mean she was 539 2 nights ago! And when she drops below 160, there has always been very clear signs of a low coming on...

Today, there was no warning at all..nothing. She was literally fine one minute and seconds later she was falling of the stool.

I was so scared!

Now I am so worried about sending her to school. I mean I am her mom and was sitting right beside her when this happened and there was no warning at all that this was coming on.

How in the world is a teacher who is watching 13- 15 kids, (one who is slightly autistic,) going to be able to constantly monitor my daughter, in case a sudden low comes over her like today.

I have heard so many stories this past 2 weeks, about kids going too low too quick, but nothing prepared me for this.. and i have to say, it scared the day lights out of Mikayla as well...

She was so upset and was scared that this time she had no "funny feelings" to warn her that she was getting low..

The nurse said that as her numbers have been so high, that a 60 to her body was like a 30 and that the sugar level dropped so quickly that there was no time to give the body a warning sign...

Once I got her above 120, I went into the bathroom and bawled...

I just thank God that I didn't panic and remembered the brief..very brief, training they gave me on what to do if she went below 80.

They have been so concentrated on getting her out of the 300 - 500's that they didn't spend alot of time on what to do if she went this low...

I have been researching all day and discovered that I should have tubes of a frosting type gel readily available, (just like the glucose tablets,) as if she were unable to chew, then I am to squeeze the gel into the side of her mouth and rub it gently in...

No one at the clinic told me this...

Do any of you use this? Does it work?

And when I asked one of the nurses about the glucagon kit, I was told that they don't usually prescribe them for kids this young...

I haven't talked to the doctor about this yet, but I would think I should have one on hand just incase..don't you?

After experiencing what I did today... a child who was acting normal one minuet and was falling over the next, I can understand why some mom's or nurses might want to run their child a little above 120....

I mean I know that once she gets through this honeymoon period, that her numbers will be less drastic than 539 one night and 60... 10 hours later...

And I know I have to keep her in a healthy range for her safety...all I'm saying is after experiencing what i did today, I can certainly see why people are afraid to let their kids get too low...

I mean i had checked her sugar about 30 mins before this and it was 166...if i had taken a shower, let the dog out for a few mins..or what ever, Mikayla could be in the hospital right now, or worse...

This is such a scary illness!

After things settled down today, I went to a friends hair salon... her daughter was home form school with a high blood suagar, so I wanted Mikayla to meet her.

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

Her daughter took Mikayla into the sitting room to talk to her and play, and I told my friend what happened today...and she broke down crying...

She said to this day, 18 months later, she still relives the day her daughter was diagnosed, and the day this past feb. when she went to wake her daughter up for school and she was having a seizure and her level was in the 20's.. She thought she had lost her daughter, as she looked dead.

She showed me a tube of some type of liquid glucose that the EMT's told her to get, which is similar to the frosting I mentioned earlier, and she carries it with her at all times..

Like me, the clinic had never told her to carry this and only showed her how to use the glocogun once..so in her state of panic, she wasn't sure what to do, so she called 911.

Luckily they got there in time!

So talking about today's events, brought everything back for her and we both sat there crying, along with the other hairdresser and just comforting eachother..

It was so nice to talk to someone face to face who is dealing with this, and to know that even on the badest of days, I have someone who I can lean on for support...

She's been there, she came so close to losing her daughter, I hope I never have to experience that feeling..today was bad enough...

Please keep Mikayla in your prayers..she is very scared tonight that she won't feel a low coming on and will get sick again... and truth be told, so am I.

I will have to pray that God will give me the strength, guidance, knowledge, and faith I need to take care of Mikayla.....

and to place my daughters life in the care of others, as I am having a very hard time right now even thinking about sending her back to school...

Thanks for listening and being there!

Hugs,
~Missy

First, teach your daughter to correct a low BEFORE you test her. My son has a juicy juice box in every classroom and always carries one on his person. All his friends know where his juice is. I have diligently trained all school personel and friends to assist him immediately with a juice FIRST then test after. If we're wrong, putting him high for a bit won't matter. You can fix that with insulin. But if you wait to test, she can very quickly get to the groggy point where she won't be able to eat a tablet or drink a juice. So that's number one. Correct the low first, then test. You may not have time otherwise.

Second, if she keeps glucose tablets instead of juicy juice, then put the tablets in a container marked "Candy for low blood sugars" Don't leave them in a container marked glucose tablets. This is because if someone trained in CPR or first aid, or any kind of emergency worker IS NOT ALLOWED to administer a glucose tablet or any kind of medication. And while glucose tablets, to us, aren't medication, to a trained certified person it is. They can help a person drink a juice, or eat candy, but not glucose tablets... go figure.

I have met with the new teachers and school personel every year and have a written IEP form at school that makes adhering to the rules madatory. And, as I said, the first rule is, fix the low first, and then test. Then keep the child still. And retest in fifteen minutes.

My son keeps juice in a fanny pack with him at all times.
The gym teacher physically holds a juice in his hand while teaching gym.
Every teacher has a juice in the same place on her desk.
Notes go out to every substitute about the juice and what symptoms to look for.

I would start lobbying for an aide if you can get one. Explain to the school how fast a low can come on. Maybe they'll fund one for you. At the very least they'll let you go in and sit at the back of the classroom until school personel are trained.