My daughter is going into the 6th grade next school year. She was diagnoised last year (Oct) so I have had many problems with the school, there is not a lot of follow through! In March she went on the pump and since then I have been trying to get a new 504 meeting for the changes. I finally contacted the principal and told her that I wanted a date set up to have the 504 meeting set up before the school year this year was over. I wanted to have everything done and ready to go before school starts again. She told me they do it the first week of school and that her teacher now would talk to the teachers of next year and let them know what the story is. First of all I don't trust this to happen! I just have a feeling that it will be a month into school and I will still be waiting. I was wondering how everyone else handles the next school years. When do you do the 504 meetings, school supplies and so on?
Thank you for being here it seems less lonely trying to figure all of this out!
Can you explain what a 504 meeting means in your school district? It may better help me understand. One of my first questions to the school is, Why are they not being accomodating? Second, I would want to know how they were going to accomodate my child in this particular situation?
Do you know who her teachers will be next year? If so, meet with them and explain what is going on. Give them direct directions and a plan if she were to experience low blood sugar levels. I really need to know more what a 504 meeting means.
I hope she goes to the 6th grade! I would hate for her to miss out because of others procrastination.
My son is also going in to 6th grade next September. He was dx about 2 months ago. If you go on the JDRF website there is a toolkit you can download which is very helpful. It gives lots of info including legislation regarding health care plans in school. You could also contact your local JDRF chapter and speak to someone who can help you. There are laws protecting your child's rights in school!
In my child's school we have a nurse who is very helpful, even though she is only there two days per week. We got a 504 into place very soon after Max was dx. She held a meeting with me, his homeroom teacher, the counselor. Copies of the plan go to ALL teachers and staff who are in contact with Max. This plan will be reviewed at the start of the new school year. There will be another meeting with all relevant faculty and staff, and necessary changes can be made at that time, including scheduling glucogon training.
Paul I think it is most likely your pump settings. Try reading 'Insulin pumping' by John Walsh. I experience(d) very similar symptoms until making some adjustments.
My last A1c from 2 months ago was 7.4, which alarmed me because the one before it had been 5.9. Over the past two months I've attempted to tighten up my control to get it back down into the 6's.
Although my Endocrinologist and I have been making pump adjustments, I do want to read John Walsh's book. Today I reduced my overnight basal by .5 unit because I've been waking up low the lpast few days. I've also been finding my blood sugars after exercise somewhat unpredictable. My exercise routine always consists of an hour of strenuous aerobic on the treadmill, eliptical or stationary bike followed by 30-40 minutes of anaerobic weight-stack (Cybex) resistance workout. I alternate days for upper and lower body training. Usually my sugar rises a little from the beginning to end of the routine and then moves downward for the next few hours.
Yes... I have often wondered what brittle is and how one knows etc. The thing I have noticed that makes mine more or less "brittle", I guess is food portions... But you are doing Bernstein, so I am sure you have a great understanding of all of that... "Chinese Restaurant Effect"
Geez... I wish my sugars were that great. I always thought "brittle" meant your sugars were all over the place and you were very sensitive to minor adjustments. Basically someone who's sugars are hard to control. Maybe not.... just my opinion
I just met with another T1 mom this week. In addition to her son being T1, her husand is what is considered a "brittle" T1 diabetic. From what she said, "brittle" means that BS control is unusually challenging, and many of the complications we associate with diabetes are presented even with good BS control. Frankly, it was a little startling, knowing that you can be doing everything "right", and possibly still not be able to control the complications. That is the total sum of my knowledge on the subject, but thought I'd pass it along.
Mo
P.S. You know you're on the top of my list of "sending prayers for health", right?
I know that back in the 60's and earlier, type 1 diabetes was also called brittle diabetes. I also found this at about.com:
"Brittle diabetes can be caused by gastrointestinal absorption problems, including delayed stomach emptying (gastroperesis), drug interactions, problems with insulin absorption, or hormonal malfunction."
Thanks Mo..., you're on the top of my prayer list too.
Perhaps I'm being unrealistic to think that I can ride between 85 and 120 all day and night... everyday. Here's a question for everyone: What level of control do you think is realistically achievable?
[quote user="Paul Glantzman"]What level of control do you think is realistically achievable?[/quote]
I think an A1c level of around 7 is realistic. I mean, my best is 5.9, worst 7.5. And at 7.5, I knew I wasn't doing everything like I should have been. But I know for others it's not that easy, and as I get older, I start to understand...:)
I agree... if you can be 7 or less on the HgA1c... you're good. I think it's unrealist to think you can be between certain numbers all day every day. We eat. You can't possible know exactly what you are eating (carbs) all the time. We go out, we eat different foods, made by different people... its tough. Trust me.. I eat out about 90% of the time because of my job. We can aim for good sugars and thats great... but don't expect it to be 100% all the time. You're too hard on yourself. Nothing in life is perfect...
I don't think this 'Chinese restaurant effect' actually exists. I think Bernstein didn't account for the fact that anaerobic exercise can raise peoples blood sugars (explaining why if the example he used, the swimmer, was racing, her blood sugar would be high after swimming).
I would disagree kindly with everyone else saying you can't achieve an excellent A1C consistently, that being said I think you do have to look over the long term. I think you should aim for a goal that is actually achievable but also makes you feel at peace with your diabetes. If that's 5.5 % or whatever you aiming for I think you should keep going for it. In terms of the big picture I think if you do have an A1C of 7.4 (like your most recent one) you shouldn't let that stop you, because it's really the average A1C over your life with diabetes that matters (obviosuly I still think you should aim for your goal A1C for every test).
I don't think this 'Chinese restaurant effect' actually exists. I think Bernstein didn't account for the fact that anaerobic exercise can raise peoples blood sugars (explaining why if the example he used, the swimmer, was racing, her blood sugar would be high after swimming).
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That is cool that you think that... But it exists for me.
I was termed a brittle diabetic, because I don't have any symptoms when my blood sugar is low. Twice I've broken my foot because I fell when my blood sugar was around 15 which is much lower than I have any desire to be on a knowledgable basis. It was scary to see how low my blod sugar had been without having any symptoms. When I was 12 I was in CHOP to see what kind of symptoms I had when my blood sugar. At that time, my heart rate didn't even begin to change till my blood sugar was below 20. Sometimes, I wish I had a better built in sensor for when my blood sugar is off. It would make life so much easier sometimes.
I went back and reread Bernstein's swimmer example to find that he says the individual only "went swimming," and not that she was involved in any maximal energy "sprint" training. By far most swimming, even racing, consists of a lot of breathing and is therefore considered aerobic exercise. Peersonally, I have always found that swimming lowered my blood sugar and was very often able to swim for an hour or so without my pump and have my blood sugars drop. I believe the point Bernstein was trying to make by this particular example is that even with the swimming the Chinese Restaurant Effect caused by eating the lettuce caused an unexpected rise in blood sugar.
Irregardless, both the Chinese Restaurant Effect and the rise in blood sugar caused by anaerobic exercise, such as resistance training, are among the "tricky" fine points of blood sugar management. I'm having an unusally "bad" day sugar-wise today despite the fact that all I did was correct a morning low with four glucose tablets and then eat a breakfast with only 6 grams of carbs. My sugar seems stuck around 200 and won't come down despite a correction bolus attempt. I just took a second one by injection so as not to rely on a possibly bad pump site. But I also suspect that the numerous bruises I sustained yesterday afternoon after falling off my bike (like a jerk) might just have something to do with it.
In The Diabetes Solution, Dr. Bernstein sets forth many concepts for improving diabetes control. However, in no place in the book do I believe I heard him claim that this is an "easy" thing to do. When my glucose control is excellent for a few weeks I don't even like to "jinx" it by boasting about it or even thinking that I've figured it out. Every time I've done either it seems to come back and bite me... don't be so cocky, big shot! (I guess this is what makes TYPE 1 FUN! LOL)
My sugar seems stuck around 200 and won't come down despite a correction bolus attempt. I just took a second one by injection so as not to rely on a possibly bad pump site.
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Is it possible that you took the second injection in another much used site?
In my first 10 years as a diabetic I almost always used my arms for injections. Now I have so many pockets in the subcutaneous fat layers of my arms that taking a shot in my arms is almost useless now. It just does not get absorbed.
I'm not sure what the correct definition of "Brittle" is. For me it has always been explained as bouncing back and forth between extreme blood sugar levels and being very sensative to minor adjustments.
Complications are more a common result than a central ingredient of brittle.
Luckily so far I seem to be part of the 5% who don't develop complications (in 30+ years). Hope it stays that way.