The new version of the American with Disabilities Act, 2008 Amendment Act sites diabetes as a disability the must be accommodated in a school district who receives fed money, and the 504 is the federal standard tool that is used to specify what accommodation are agreed on. Otherwise, it the district cannot provide the accommodation, the district my provide an environment or resources that enable the student to learn w/o obstacles. The idea that they will not enable access to glucagon is in direct violation of the ADA. What to they do for their Epileptic or Asthma students?
Meters are available for free, if you do not have backups, let us know and someone an send you one of the type you need. They seem to be on thin legal ice...keep pushing! Riley deserves better support in school.
Here is a link to the ADA information: http://www.ada.gov/pubs/ada.htm
If you are in the Denver area give JDRF a call. Support groups may be found there.
JDRF Rocky Mountain Chapter 8055 E. Tufts Ave Suite 770 Denver, Colorado 80237
t: 303.770.2873
f: 303.721.6130
[/quote]
Thank you. I am about 3 hours south of Denver and a hour south of Colorado Springs. I am in Pueblo. There seems to be nothing here. I wont let them push me around and not give Riley what she needs. I could use another meter we have the one touch ultra mini and out insurance company will only pay for test strips for that one. Which irks me beyond belief too but one battle at a time.
I talked to the principle this morning and he is going to contact the person in administration to confirm the info I gave him and have them notify the Nurse she is in violation of both state and federal laws. Oh and if there is a district policy saying such he is going to have them show it to him personally and he volunteered to be trained to administer the glucagon himself if need be.
I work in JDRF's national communications office and we receive inquiries from time to time from parents like you who are working to ensure that their children receive proper care for their diabetes in school. Communicating with the school administration is a good start. To help with this process, JDRF has a great resource called the School Advisory Toolkit. The Toolkit was written by a school principal who also has his own child with type 1 diabetes, so it approaches these types of situations from different perspectives.
Specifically, the Toolkit includes:
- An entire section devoted to your child's rights at school
- A section explaining Section 504 and offering guidance on working with the school to create a 504 plan
- Recommendations on how to communicate with the school so that it will be your partner in ensuring your child's proper care and safety
- Information about when and how to administer glucagon
I agree with Travis. If the MD has her on HPH, find another MD. That is now appropriate for a T1D. That is the "old" way and has not been a part of the recommended treatment for a long time.
The problem with NPH, like Travis pointed out, is that it is an active background insulin and can create lows that are hard to predict and control.
The cost is cheeper, but the safety and manageability are far greater. Lantus is kind of like a MDI version of a pump.
I will check and see if my insurance will cover it at the same price. Sadly I have to say that as it is now all the supplies we need for her is going to cost us 185 a month. Which is a lot for us. Our case manager is a diabetic nurse practitioner. She has been doing this forever so I guess she is stuck in the old ways of doing things. Tho everyone at the hospital loves her. The picu doc left it up to her when we were ready to go she discharged us not the picu doc. Once we can afford to travel out of town for a Endo we do plan on getting one. There is only one here and I guess she doesnt take kids I guess. Thanks for all your advise and help.
Novalog is a relatively new type of insulin, so it's weird that she'd give you NPH instead of newer alternatives. The retail cost of Lantus is like 90-100 per bottle with no insurance, about the same for Novalog. Hopefully though the Lantus could last you longer because you only need 1 injection a day, as opposed to 2 for NPH. You can see any regular practice physician to get a new insulin Rx though.
Right now this could make a difference we are on a fixed meal plan. She get 60 carbs for meals and 15 for snacks. So maybe that is the reason for the nph we dont bolus or anything. She gets a dose of nph in the morning and now no novolog and at night she gets both. I have no idea and dont really want to go to a regular doc ours seems to think he can manager her but I not know much about t1 would rather start with a endo until we are more comfortable with her care.
It sounds like you are getting a good handle on the school and your daughter's management. You have a good principal, I believe that is what all principals should do! With the stereotypical needs of children with autism in mind, you are probably already doing some of the things in your house that will make your daughter's life easier, too (predictability, planning for changes in routine, etc. sorry if I am assuming too much). I want to congratulate you on figuring out how to jump the hurtles so quickly!
It sounds like you are getting a good handle on the school and your daughter's management. You have a good principal, I believe that is what all principals should do! With the stereotypical needs of children with autism in mind, you are probably already doing some of the things in your house that will make your daughter's life easier, too (predictability, planning for changes in routine, etc. sorry if I am assuming too much). I want to congratulate you on figuring out how to jump the hurtles so quickly!
[/quote]
Nope your not assuming to much. You got it right. Scheduling her is a little more difficult than them cause they made up theirs more than I did but time is something that has ruled us for many years so we are use to that already. Dinner time was a struggle at first because the boys need me in the kitchen cooking at 5 not 5:01 but 5 sharp lol. They actually have been very good waiting a little while for me to get started on the few days during the break she got up late. Thanks I guess I am use to it with the boys really them being autistic has really made me adapt to her needs faster and easier. Yeah our principle is great. He really does all he can for us. One of the boys had a hard start to the year and he made a deal with him that he could take home his magnets if he had good days. He has brought home many and returns them the next day or later that week depending on how long the principle tells him he can have them for. Plus I have really good kids and I am so not bragging they are a handful and a half but respectful kind to others and polite. Their issues (i hate using that word) are besides the point they still all need to learn how to grow up and function in this world despite their disabilities. There disabilities might be reasons of why but never excuses as to why.
Right now this could make a difference we are on a fixed meal plan. She get 60 carbs for meals and 15 for snacks. So maybe that is the reason for the nph we dont bolus or anything. She gets a dose of nph in the morning and now no novolog and at night she gets both. I have no idea and dont really want to go to a regular doc ours seems to think he can manager her but I not know much about t1 would rather start with a endo until we are more comfortable with her care.
It is really hard to read your post w/o getting a
bit unnerved at the medical professional who are attempting to help treat the
D. the NPH regimen is really from the dark ages as well as the timing on food.
I fought to get off of this back in the 80's because it was not a good way of
managing BG and D.
Granted, this is only my opinion, but I have to say
that the best thing you can do for your daughter is to get to a MD or CDE who
knows what they are talking about. The idea of chasing BG with NPH is scary
and it causes me a lot of grief over the years.
If there is a medical school near you, see if you
can get in for free with a diabetes specialist or get into a medical study. You
can learn a lot from the experience and get a lot for free.
Sorry for sounding so pushy, but the more you have
described your daughter's D management, the more concerned I have become that
she may be dealing with challenges that are not necessary in the life of a D. There
is enough to deal with w/o having to be forced to eat as certain times or
else...panic, problems, BG and emergencies.
I have heard of a few people who have started on this plan in the beginning but more often it seems they do not. I agree with you but I dont trust our local doc to treat her and there are no endos available in our city. We are dead broke right now until I can afford to travel even dark aged diabetic care is better than nothing. I agree with you for the most part my thinking is more I hear how others are treated and this way just sucks. Tho our case manager did say something about wanting to see her patterns before giving us a scale to follow for the insulin. I am not sure if she is planing on changing everything or if she is just going to give us a scale for when we give it to her already. There is the Barbra Davis center up in Denver about a 3 hour drive. Which isnt bad if your tires are good which mine are not. We are working on getting our tax return early so we can make it happen sooner. I guess you start up there then endos come to Co springs which is closer to use and more manageable normally for us to get too. So what I am getting at is I dont like or agree with this way either but cant afford to make it change just yet. I also have not been pushing because my daughter I explained flex plans to her and she does not want more shots perday. She only wants shots in her arms and I was trying to get her to let us give them in different sites before we added more injections to her daily routine. I cant push her but I explain the importance of different sites every time she says no. She also does not want the pump yet. She told me last night not until she is 10 or 11. The thought of it going into her tummy scares her badly. Even after its in just living with it in her belly freaks her out. So again not pushing her but keep telling there are different and better ways to manager her D.
Thanks for hearing me after I was so harsh Jessica. Some of the story you tell about he concerns are right on mark with the "early years" of many of the T1D I have talked with, some even in the later years. I'm sorry all of the options are not there for you now.
Many kids with T1D find that Diabetes Camp is a big learning, bonding and growing experience. The Denver ADA has a camp, but that is all I know. They have funds for sponsorships. If they don't you contact me and I'll see what I can do to help.
Jessica I know how hard it can be to get them to be willing to try different sites but the tummy and legs hurt far less then in the arms. Cassidy wont let me any where near her arms cause the tummy and legs are so much better. I dont know why but for her they are. Hopefully your daughter will be a bit more receptive to different sites.
My son sees a pediatric endo at Barbara Davis Center in Denver. He is on NPH and Humulin in the morning so his NPH peaks with his lunch. = fewer shots and he likes that!!
Jessica. My son is much younger, but we have used his arms and his hip area (above buttocks) and we use a cream called EMLA - it has lidocaine in it. Just a pea sized dot on a bandaid about 45 min before the shot and it numbs up the skin. Make sure to wipe it off with an alcohol pad and dry before giving the shot. You may need a script for it, but it works well for my son. Just a little info. Hope it helps.
Thanks for hearing me after I was so harsh Jessica. Some of the story you tell about he concerns are right on mark with the "early years" of many of the T1D I have talked with, some even in the later years. I'm sorry all of the options are not there for you now.
Many kids with T1D find that Diabetes Camp is a big learning, bonding and growing experience. The Denver ADA has a camp, but that is all I know. They have funds for sponsorships. If they don't you contact me and I'll see what I can do to help.
Did you say you called the Colorado Spring JDRF?
[/quote]
I dont think you were harsh. I do feel guilty for not knowing all and not being able to do enough for her right now but I do agree with you. I dont like the nph at all.
Yesterday at lunch for her one nph peak time she was over 300 before eating 3 hours after her last snack. I have no clue why she was so high but it doesnt seem to be working for her. We are at 26 units of nph going up to 27.
She is so shy with both kids and adults I am not sure she would go. I would send her to one if I could in a heart beat. She did ask if I could ask the principle if one of the other diabetic kids at her school would be willing to meet her. So that is a step forward.
No I have not called them.
To everyone else thank you. I did tell her if she did switch insulin she would have to get them in other places. She said ok to it so this weekend I am going to get her to pick a place. Her thing isnt so much the pain but she cant watch it go in and even more come out.
Now, that sounds like a healthy T1D. Let me get together with the other Ds and I'm tough and stubborn.
Careful on adjusting the NPH w/o knowing what the cause of the hi was. Take your time with increases since they have an immediate impact on BGs. The high could also be a reaction from the liver to the low. The liver will dump out glycogen if it has it when he bg is too low.
I like Riley's attitude. She will be great. The group thing sounds like a great idea. The moderator will make or break it, hope they can find a supportive one. Maybe a local RN/RD CDE would volunteer.
She has us going up on the nph only after a few high days in a row. Or dinner time highs. We are on our own this weekend. We pretty much know how to adjust the insulin if needed based off her numbers. She also ran lower when home with us than when she started school. It could be a combo of her being stressed and not having as much activity. She has pe 3 days a week and only one 10 min recess before lunch. She can be way more active here just following me around bugging me all day long.