I just returned from a week in Washington and was shocked to read your post. Truly, my heart goes out to you and Mikayla.

I am a type two diabetic and right now I have one suggestion that was over looked when I was first diagnosed five years ago.

The diabetic educator/nurses may have mentioned this, but if not this is important to know regarding glucose test strips. The test strips need to be kept below 86 degrees and not stored in the refridgerator (check the vial package instructions.) Also, use the test strips within three months of opening the test strip vial. Thus, it might be a good idea to work off of one vial until that vial is empty. Also, test strips are very sensitive to light and heat exposure. Thus, it is important also to close the lid to the vial once you have removed a test strip.

When I need to test and am not at home, I leave my meter in the car but carry the test vial or vials in my purse. This way the vial or vials will not be left in a car that is too hot.

It seems like you and Mikayla are in good hands. I commend you on the fantastic job you are doing working with the professionals in learning how to meet Mikayla's new needs. Compliancy is most important in managing diabetes. Be sure to get enough rest and know that it will get easier over time as the whole family adjusts. I will keep you all in my thoughts and prayers.

We were lucky, originally this was proposed by the area supervisor at the Dept. of Public Health. This person told me that if we did it that way, there would be a whole class (75 kids) raised with my daughter's diabetes, who would be matter-of-fact about it and helpful if, say she ever got "too pale" on the soccer field.

This is pretty much how it has gone. Kids
love any new gadget like meter or pump, and when a softball hit her hand, the other kids tested her blood for her! It's all just part of normal life for them all.

With the school, the idea was that according to the law, she should not miss any classtime, and going to the nurses' office for care would impact her education (my daughter tested a lot when younger).

As a result, an aide or extra nurse was usually hired to care for the two kids with diabetes, Now, of course, she takes care of herself and this is no longer necessary.

Before kindergarten, the school went to town meeting and asked for extra money to hire a part-time extra nurse. Their argument to the town was that it would cost more money to send them out to another school.

Massachusetts recently passed a law that says kids with diabetes can do their tests and shots in the classroom. There have been cases through Section 504 (Office of Civil Rights, Fed. Dept. of Education) where this has been established as well.

Of course, this is a matter of choice, but it has worked out well for our daughter and for her classmates.

The other thing is that the school needs to make sure staff members are trained in glucagon for rescue, and although a lot of us parents always go on field trips, you are not obligated to do this and a nurse should be provided.

The American Diabetes Association, as some of us have mentioned, has a great sample 504 and health care plan. Since it is now May, maybe you can reread any posts about school over the summer, once blood sugars have stabilized and you have a spare minute.

Hi Everyone,

You guys are awesome... I can never thank you enough for all your encouragement, support, advice and prayers...

I have been crying most of the day..

Today is my birthday and Mikayla and I decided to celebrate by having a picnic lunch and then a trip to see Grammy and Grandpa in the woods ( what she calls my dad and step mom)

Things were going fairly well and then out of the blue Mikayla became very fussy, and agitated. Then when I suggested she have a snack as I was told to do this if her moods changed, she became very aggressive and she actually hurt my wrist by pulling on my hand.

I was shocked. So was my dad....Mikayla is a sweetie. She was elected the class friend and is getting the citizenship award..she is truly a sweet little girl...

Of course she has her moments, she is a redhead afterall but nothing remotely like this.

I took her blood sugar and it was 428..about the same as it always is that time of day. So I gave her a snack and literally within 5 mins she was back to her old self.

I called the doctor and his nurse said that it was because her sugar level is off.... and that kids often behave differently when this happens..

Yikes, just when I think I'm getting it, something like this happens. And now Mikayla feels badly that she hurt my wrist. She truly doesn't even remember tugging on it...now that is scary!

She had eaten about 1 hour and 45 mins before this happened, and I give her a snack every 2 - 2 and 1/2 hours, so I'm not sure what happened.

The nurse said that while she is in this is honeymoon stage it is going to be difficult and every day will bring its own challenges.

If I could have anything for my birthday it would be that this would all just go away..I know that isn't going to happen, so I'll wish that her sugar levels will stabilize so we can manage it and she can lead a somewhat "normal" life.

I am feeling so overwhelmed... Heck, I'm crying as I write this..it seems like that's all I have been doing today...Please tell me that the nurse is right and this will get better once her sugar levels stabilize...it is so difficult seeing her like this

Well I have to get going. My husband and I had reservations at my favorite restaurant tonight, but as it's an hour away, we cancelled it.

My sister and husband insisted that I take a break, so I am dropping the kids off at my sisters and going out to eat at a restaurant about 4 mins from their house.

I am so nervous about even being away from her that Long!!! But I will give her the insulin and dinner before I leave and have a bag all packed with snacks, glucose tabs, juice, insulin, all the doctors numbers, the test kit and of course her diabetic teddy bear..

And I plan on eating with my cell phone in my hand!!!.. I'm not kidding...I know I'm probably over reacting, but I will never forget the image of her in diabetic/insulin shock last Friday..I see it every time I close my eyes!

Well I have to get going, my husband and kids are waiting for me.. I have to put on a happy face and celebrate my birthday with the kids. Mikayla even made me a special present so I wouldn't be so sad..here she is 6 years old, being pricked so much she looks like a pin cushion and getting shots twice a day and she is worried about me...she is amazing!

thanks again for everything and I promise I'll email you all when I have more strength and time!

quote:

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Originally posted by Lyddie:
Lymebrat, how's Mikayla and how're you doing?You are probably too busy to check in so I am bopping this up for now. Is Mikayla coming down and feeling better?

---

Lyddie,
could you edit this out? [the boxes] I think that's what is making the screen too wide. I'm having trouble reading it, as I'm sure others are.
Thanks!
How'd you do that anyway??!

PAGE 2 IS HARD TO READ BECAUSE OF THIS
------------------
oops!
Lymetutu

[This message has been edited by Lymetoo (edited 18 May 2005).]

also, federally, it's still a law that only nurses can inject a child with glucagon sticks for very low blood sugar. THe ADA is trying to change htis, however, every year the nurses have fought it and it has failed legislation and htere is a reason we have fought it. THere could be many reasons htat a child goes into a coma, and only a licensed nurse can fully asssess a child and make sure it's because of low blood sugar and that hte glucagon NEEDS to be given or it can really injure a child. For instance , one of my diabetic s is also a seizure child, and can become unconscious from seizures, if someone gave her glucagon without testing her and boostedher bloodsugar more it could really be a problem. If an untrained person who cannot fully assesss a child gives the glucagon it can cause disastrouse results.....some children go into a coma if their blood sugr is too high, and you've just boosted thier blood sugar alot...

so we nurses have fought to keep it so nurses alone can assess a child to give the glucagon, that's why nurses always are supposed to be in a school building if there is a diabetic child on premises...I"m never allowed to leave the building...

the only other person who knows thier own child and who could test them quickly enough to know whethr to give hte glucogon sitck etc would be the parent at home ...plus they know thieir child better than anyone....

so if a school is presently allowing any staff memeber to inject 'in case' a glucagon stick they are going against federal regaulations of the Nursing regulations for diabetic children. THe bill jjust once again went before legisltion this past month and failed again....

IT IS THERE FOR THE SAFETY OF THE CHILDREN. THEY NEED TO ALWAYS BE PROPERLY ASSESSED IF HTEY SHOULD FALL INTO A COMA..NOT JUST GIVEN AN INJECTION...

just some inportant info from a nurse that deals with many diabetics every day...they're like my babies and I watch over them very carefully....

Lisa

Glucagon regulations are a big problem. EMT's cannot administer it, so if a child with diabetes stays after school for sports or for a play, technically, the school nurse should be there- for ALL school-related activities, so that someone is there to do glucagon. This is at any age, not just younger children,

Most schools can't afford this. ADA is trying to pass legislation on this, to allow aides or teachers to do it. I have had public meetings with selectmen and with our regional Emergency Medical director to try to get the EMT issue resolved. basically, NOONE will do it ...

School nurses aren't allowed to train staff to do glucagon,either,so our school (wink, wink) had me train coaches and teachers
and wrote me a letter of thanks, to prove they hadn't!

Glucagon is not going to cause a coma from a high. It takes a few hours for that to happen. It really can't do any harm. Besides, the protocol calls for a blood test first.

Another great issue is that school nurses aren't allowed to make insulin decisions, They need a doctor's order. This doesn't work at all with "tight control." The very essence of tight control is adjustment of insulin. Endocrinologists would never be able to take that many phone calls. So our
school gave my daughter a cell phone and if she needs an insulin adjustment or a shot at all (she's on the pump), she has to call me and then I tell her what to do. Again, they allow me to do it to avoid doing it themselves. The whole situation w/DPH regulations is a big problem.

What I am saying is that in our town, the solution to every regulatory problem has been to rely on the parent, which makes it awfully hard on us parents (not to mention family incoome). There are years when the nurses have called me every single hour of the school day.

The new Massachusetts law actually allows kids to take care of themselves. I personally don't agree with this. it's an easy way out for everyone who is dealing with regulations, but not safe for a kid under 12. I think this law will mean schools will be even less responsible for kdis with diabetes,and they won't fund nurses to help the kids because, after all, it's now legal for the kids to do it themselves. End of liability for the schools, so end of funding.

[This message has been edited by Lyddie (edited 18 May 2005).]

My daughter went crazy when she ate a bagel in the early weeks. When her blood sugars fluctuated (and I mean between 40 and 300, which is normal at first) she was not herself and was "emotionally labile."

I forget if I wrote this before, but this is the reason we did tight control, not just to avoid complications.

I told the MD that the hardest part of the new-onset diabetes back then wasn't the shots or the tests or the getting up all night, it was that my daughter was not herself . More stable blood sugars took care of this.

So what you are experiencing (with Mikayla acting different) is common and will get better. Hang in there!

The RI nursing Association is in favor of the bill, as long as the Dr., nurse and parent are in agreement that the child is able to handle the testing in the classroom and is safe in doing so. In other words, can count his own carbs, handle drawing up his own injections, or bolus' if on pumps etc.handle blood bourne pathogens etc...

but currently, there is no bill in RI that supports a child testing in the classrooom. The federal government backs 'any state that decides to allow for testing for any child, however has left it up to the individual states, and then the individual school systems to make up their own regulations regarding the allowance of glucose monitoring in the classroom.'

THis is why I said, just check with your own state. Some states have passed the regulation already, some have not. If Ri"s passes in June, which it should, then all schools can have a policy in place by Sept. 1, 2005 for their Diabetic children.

As a school nurse in our district we have very strict medical management plans from our endocronolgist's on each of my diabetics children that tells me what to do in every situation for each 20 pt over or under their blood sugar may be etc..or how to administer their insulin depending how many carbs they eat etc...the management plan tells me also when to administer glucose tabs and juice , and when to have them test for ketones, as well as drink water if their over a certain level. These plans are very specific so that we have no contact with the parents at all during the day, we just follow their medical management plan...even the kids on the pumps, (changing out the sites etc. if the resoivoior goes dry, or the alarm won't stop going off etc..) we follow their plans also. We have all their drs on call if we have any questions, and of course have the option to call the parent if we have any problems, but usually since the medical managment plan is so precise we can follow it every day , for every situation and hve no problems. If we have a serious prblem of course we do call the parent.

THis system has worked great for us for years. We have Joslin clinic formulate hte plans for us,so they're excellent for each child. THey are written into our kids 504 plans so the parents are very happy with the plans.

Lisa

Lisa

[This message has been edited by lla2 (edited 18 May 2005).]

quote:

---

Originally posted by lymebrat:

Hi Everyone,

You guys are awesome... I can never thank you enough for all your encouragement, support, advice and prayers...

I have been crying most of the day..

Today is my birthday and Mikayla and I decided to celebrate by having a picnic lunch and then a trip to see Grammy and Grandpa in the woods ( what she calls my dad and step mom)

Things were going fairly well and then out of the blue Mikayla became very fussy, and agitated. Then when I suggested she have a snack as I was told to do this if her moods changed, she became very aggressive and she actually hurt my wrist by pulling on my hand.

I was shocked. So was my dad....Mikayla is a sweetie. She was elected the class friend and is getting the citizenship award..she is truly a sweet little girl...

Of course she has her moments, she is a redhead afterall but nothing remotely like this.

I took her blood sugar and it was 428..about the same as it always is that time of day. So I gave her a snack and literally within 5 mins she was back to her old self.

I called the doctor and his nurse said that it was because her sugar level is off.... and that kids often behave differently when this happens..

Yikes, just when I think I'm getting it, something like this happens. And now Mikayla feels badly that she hurt my wrist. She truly doesn't even remember tugging on it...now that is scary!

She had eaten about 1 hour and 45 mins before this happened, and I give her a snack every 2 - 2 and 1/2 hours, so I'm not sure what happened.

The nurse said that while she is in this is honeymoon stage it is going to be difficult and every day will bring its own challenges.

If I could have anything for my birthday it would be that this would all just go away..I know that isn't going to happen, so I'll wish that her sugar levels will stabilize so we can manage it and she can lead a somewhat "normal" life.

I am feeling so overwhelmed... Heck, I'm crying as I write this..it seems like that's all I have been doing today...Please tell me that the nurse is right and this will get better once her sugar levels stabilize...it is so difficult seeing her like this

Well I have to get going. My husband and I had reservations at my favorite restaurant tonight, but as it's an hour away, we cancelled it.

My sister and husband insisted that I take a break, so I am dropping the kids off at my sisters and going out to eat at a restaurant about 4 mins from their house.

I am so nervous about even being away from her that Long!!! But I will give her the insulin and dinner before I leave and have a bag all packed with snacks, glucose tabs, juice, insulin, all the doctors numbers, the test kit and of course her diabetic teddy bear..

And I plan on eating with my cell phone in my hand!!!.. I'm not kidding...I know I'm probably over reacting, but I will never forget the image of her in diabetic/insulin shock last Friday..I see it every time I close my eyes!

Well I have to get going, my husband and kids are waiting for me.. I have to put on a happy face and celebrate my birthday with the kids. Mikayla even made me a special present so I wouldn't be so sad..here she is 6 years old, being pricked so much she looks like a pin cushion and getting shots twice a day and she is worried about me...she is amazing!

thanks again for everything and I promise I'll email you all when I have more strength and time!

God Bless,
~Missy

---

Tight control requires frequent tests and adjustments which should be supervised or done by a nurse, where the kid is, so that the child doesn't miss out on learning. If laws change and allow aides to do this, it will certainly be much better for nurses.

The kids in your school may have much higher HgA1C's. My daughter's doctor is very aggressive, does not support rigid guidelines for care, supports flexible judgements, and my daughter's HgA1C is in the 5's.

Insulin doses vary tremendously depending on exercise in the last 24 hours, having a cold, what you eat, whether you have a headache, etc.etc.
Furthermore, one kid will take 4 units for a given blood sugar and another will take 1.

Throw in Lyme disease, antibiotics, Plaquenil, SSRI's whatever Lyme kids end up dealing with IN our case pneumonias, sinus infections, surgeries, head pain, kidney inflammation,yeast infections, you name it) and you have a blood sugar picture that is not too consistent.

We need someone at school who will THINK about it, not just follow formulaic orders. Nurses can't/don't do this.

We get along great with our school nurses, principal and teachers because I have just done whatever most helped my daughter's health, which is to handle the diabetes 24 hours a day for years (at this point she does most of it herself, since she is 15). My pleasant availability has relieved them of many problems, including regulations- but there should be a better way.

My sister and her husband met us at the restaurant and I ended up having a good time..I did however call my sister to check in on Mikayla 3 times in 1 hour..

I have to take Mikayla in to the diabetes clinic tomorrow and we are going to discuss her highs and lows and what to do when she has these mood changes.

Mikayla is very upset that she unintentionally hurt my wrist..I keep telling her that I'm fine, but she is such a loving little girl that it bothering her..so I'm hoping the doctor and nurses can explain what happened better than I can.

Someone asked about how she could be in a honeymoon period with 400 numbers... I'm not sure, but that is definitely what they are calling it.

Her numbers go from 298 to "Hi", which means it is higher than the meter will read which I think is 600.

Her doctor told me not to worry about the high numbers as she was already over 1000 and that with the insulin shots, she should not go much higher than 600.

And that although 600 is very high, her body considers it low compared to the 1000 or above she has had for who knows how long.

SO for now, I am suppose to be concentrating on lows..even 300 is a low for her as her body "thinks" the level is dropping, as it has been running on over 1000 level.

So when she gets dizzy, shaky, fussy, yawning all the time, etc, I am suppose to treat it like a low and give her a snack.

So far this has been working well. If I notice any of these signs, I give her a snack and within 10 - 15 mins she is fine.

I'm not real up on all the terms yet, I am just taking it one day at a time and trusting my instincts.

I have been reading everything I can get my hands on and find the juvenile diabetes web site to be very helpful.

You have all been a great deal of help as well.

I'm not certain what will happen at school yet and will cross that bridge when I get to it..I am on over load and can only take this one day at a time, otherwise I would be too overwhelmed and feel more inadequate than I already do.

I do know that Mikayla's diabetes doctor has talked to the school nurse as she told me that they were working on a 504 health plan.

We live in a small community with our own elementary and high schools. There is a head nurse if you will who oversees both schools, she is very informed about diabetes..

we also have 2 other full time nurses at the elementary school level as well, who are fully trained in diabetes.

The nurse has called me several times at home to check in on Mikayla and informed me that they will make this as easy on Mikayla as they can.

They are going to test her twice a day, and the doctor has given me everything I need to send into the school with her.

They even asked me if I wanted them to hire a tutor for Mikayla until she can get back to school...

Mikayla loves school and at this time her teacher is sending home work with her brother that she "can" do if she wants. Mikayla loves having homework and when she is able, she does her work and sends it in with Derek the next day.

So far it seems like the school and school nurses are being wonderful to us and they truly care about Mikayla... and thankfully I don't foresee any troubles with sending Mikayla to school and feeling certain that she will get great care in their hands.

But I will be sure to come here and seek help if I run into any troubles..

Well thanks again..I think I'm going to try to get some sleep. I haven't slept in days. I think all the crying I did today has taken it's toll and my body is telling me to get some rest.

I'll let you all know what the doc says tomorrow at the clinic..

In reference to your episode with Mikalya's uncharacteristic mood swing, I'm afraid you will see emotional levels swing in correspondence to changes in blood glucose levels. Highs and lows both bring on episodes of agitation and irritation with our son and with other diabetics we know.
Tighter contol can help this. We haven't been as successful with tight control during the teen years, but hopefully if you establish good habits while she is young, it will carry over. I know this will sound sexist and I apologize to any male readers, but anecdotally, it seems like girls tend to be more successful in keeping tight control during those teen years, but you have a long time until you have to worry about that anyway.

Have you gotten a medic alert ID bracelet or necklace yet? Very important. Our son quit wearing his, but at least he carries a card in his wallet and his pump is fairly visible. There are some cute styles available now- woven, available in different colors. They look like what we used to call friendship bracelets. Look in the back of some of the diabetes magazines and you will see ads for them.

Also, make sure your doctor gives you a prescription for an extra glucagon emergency kit for school and if Mikayla goes to any type of day care or other program after school, make sure they have one there as well and that someone has been instructed how to use it. Our son is leaving in the morning for a 5 day school trip and he is taking one, but I am nervous because no one has any experience with using one. Of course, I don't either, since the situation has fortunately never arisen, but at least I have an understanding of what to do.

My heart goes out to you and Mikalya. Reading your posts brings back alot of familiar feelings. I remember how difficult those first few months were. It feels like you have to be your own doctor in a way - there are so many decisions to make every day - how many carbs, how much insulin, how will exercise effect current blood sugar, changes in blood sugar caused by illness or stress, how to handle school, family and friends, social events. . . the list goes on and on. But as I said in my previous post, it really will become second nature in time.

The first year, I kept a detailed diary of every bite of food he ate, his insulin doses, glucose, etc. Eventually, I learned how to count carbs (I wasn't taught this in the beginning, believe it or not) and just kept it on his glucose chart, but I was really obsessive in the beginning. I also didn't want to let him out of my sight, but I eventually loosened up there too. And, it is normal to react with grief. I lost 30 pounds myself in the first month and spent portions of each day in tears. The stress is phenomenal, but I can tell you & Mikayla are both strong and are hanging in there. Every day I wish I had a magic wand that I could wave that would take away these diseases from our children. I've made your birthday wish a number of times myself and both of my children know that if I could, I would gladly take their diseases for them, unfortunately it just doesn't work that way. We just have to be there for them to support them and to make sure they get the best medical care possible.

Well, enough rambling. Wishing you and Mikala all the best and hoping your journey into this frightening new world soon becomes easier.
Try to take care of yourself during this time too.

From our point of view, this is a civil rights issue. The blood involved is a tiny drop, which is absorbed and neutralized by a swab. A kid with a band-aid is more of a threat. (And my kid doesn't have AIDS either. This hysteria about blood comes form the AIDS crisis).

Going to the nurses' office every couple of hours to test would affect my kid's equal access to eduation.

This is like saying you don't want a kid with Lyme in the pool with you because you might catch Lyme!

quote:

---

Originally posted by Lymetoo:
[b]Lyddie,
could you edit this out? [the boxes] I think that's what is making the screen too wide. I'm having trouble reading it, as I'm sure others are.
Thanks!
How'd you do that anyway??!

PAGE 2 IS HARD TO READ BECAUSE OF THIS[/B]

---

You are doing great! It sounds like you have a wonderful team supporting/educating you and Mikayla.

After you read through these posts you might want to print all of them out so you can refer to it later, I think in our desire to share with you, help and encourage you, that you may get overwhelmed thinking you have to learn everything all at once, some of our situations you won't experience for awhile, and just look how much you have learned this past week.

Our Dr. told Amber that she and I would end up being the experts on her diabetes.

Trust yourself Mommy, remember This too shall pass. Soon it won't be so upsetting.

God Bless
Cindy ><>

I'm surprised that your school system's nurses aren't in charge of this...we are told we must be totally current.
we have meeeting with parents and physicians monthly to update 504's and send home daily logs with info...it's quite an undertaking..but it's part of my job to keep up with their needs...I have 4 very brittle diabetics, adn they are very time consumsing to manage...but they are sweethearts, and I love they aare part of my day everyday...

Ila2: Your attitude is certainly different from our nurses, and would perhaps be most welcome by us parents here. But if regulations prohibit nurses from making certain decisions (insulin dosing) I can't imagine how it would work. As I said, for us, esp. w/Lyme causing variability, insulin doses change all the time. All kids w/type 1 are "brittle," but much less so with very frequent testing and fine-tuning insulin doses for how they are "running" that day.

This is enough for poor lymebrat. I apologize! A DPH official suggested a long time ago that my child test i the classroom nad supported the school funding nurses to got to the child every couple of hours. This made a tremendous difference in my child's life and health, and I just wanted to pass it on as a choice that can be made down the road.

[This message has been edited by Lyddie (edited 19 May 2005).]

I came across the following article this morning and thought you and your husband might find it helpful: "Diabetes Care in the School and Day Care Setting" published by The American Diabetes Association in 2005. This article can be found at:
http://care.diabetesjournals.org/cgi/content/full/28/suppl_1/s43

If you do find this article useful, it might be a good idea to print it out now for future reference and review it when things seems less hectic and overwhelming.

Wishing you and Mikayla a better day. Hang in there, you are doing great!

Extra wide screen is extremely hard on us late-stage lymies since we can't scroll back & forth & be able to comprehend anything.

Yes, please edit the post Tutu referred to for all of our benefit....thanks so much.

If I knew how, I would fix it in a second. I'll ask my teenage son, when I see him (not too often). Thanks for your patience.

IN fact we use their medical managament plan to send to our endocronologists for each individual diabetic child to be filled out , because they are so specific....

great article.

I thought this article might be a "keeper." The ADA is a great resource for both the professional and the lay person.

When I taught in the RI public school system, I never knew what guidelines school nurses followed in their care of diabetic students. Your update regarding this issue has been enlightning....thank you.

thanks ..and hope things are going well missy

continuing to keep you guys in my prayers...

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.

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.

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

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.

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).]

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.

------------------

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!

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).]

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!

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

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...

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

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

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

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!

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.

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!

*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!

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!!!!!

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!!!!!

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..

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.

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..