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Brittle diabetes?

Discussion in 'Parents of Children with Type 1' started by Kazee6, Feb 21, 2011.

  1. Kazee6

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    I had not heard the term "brittle diabetes" until recently and have begun researching it as much as possible because of my oldest son. I know that some of the research I have read states that it is a difficult form of diabetes, but other information suggests it is simply a way to describe diabetes in people who do not take care of themselves. Wyatt and Lucas could not be more different in their diabetes, however, I use the same caution/stringent schedule with both of them. Lucas reacts well to his basal rates, correct doses and boluses, where as Wyatt reacts all over the place. Even with the pump he is all over the place. He has extreme highs and extreme lows, both have led to numerous hospitalizations and ER visits. Most days I feel like I will never get his BG under control. Today is an excellent example. I am very careful with their food, make sure I keep track of every carb and have them both check their BG probably more often than I should, however, he was high all day. I changed his site twice, bolused with his flex pen and we are still over 300. He has eaten nothing abnormal, and I have not allowed any snacks today. This pattern is fairly normal though with him. I have no idea what I am doing wrong, but after researching this, I'm beginning to wonder if there is more going on than I realize. Today I read that one of the signs are gastro problems, which he has had since prior to his diagnosis. Our Endo has attempted to get me to believe that these two problems have nothing to do with one another, but I've never quite believed that. I'm hoping that someone here has some information/experience with brittle diabetes and can help me out. I plan to email our nurse tomorrow to get her take on it, but would like some assistance here as well. Thanks!
     
  2. Sarah Maddie's Mom

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    How old are your children and at what age dxd?

    Is this a new phenomena?
     
  3. Kazee6

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    Wyatt is 9 and Lucas is 8. Wyatt was diagnosed as age 4 and Lucas at age 7. Wyatt's all over the place numbers have been pretty consistent since diagnosis. I'm not even sure he ever went through a honeymoon stage. It's just frustrating to do everything you can and still have his numbers jump around with no rhyme of reason. He has been tested for celiac and thryoid problems and has been negative each time.
     
  4. Mik's Mom

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    My daughter is hypo unaware and her blood sugars fluctuate a great deal, she is also insulin sensitive and for these reasons her endo said that years ago they would have labeled her "brittle". Meaning that her diabetes management was hard to keep under control due to the roller coaster of high and low blood sugars. I followed her doctors orders to the letter and she still would have highs and lows. She even stayed in the hospital for 5 days and they controlled everything she ate, drank and the insulin dosages and even they couldn't get her blood sugars stable. Just like every child is different, every child with diabetes is different. as is their care. I know kids with diabetes who only have to have 1 insulin injection a day, while others have to have 7-10 shots a day, treatment is very individualized.
     
  5. mmgirls

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    Gastro problems can definately make for lows followed by highs. I would not write that off as not adding to the complexity of one child compared side y side. I would definately pursue getting to the bottom of those issues to see if it helps with D care.

    I have never liked the term Brittle, everyone has their definition and no ones is ever the same.
     
  6. dejahthoris

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    I have a friend with Brittle Diabetes. She has been frequently hospitalized. She got a diabetic alert dog. This really helped her not only track trends in her bg but also helped her feel better and happier. Since then she has been able to hold down a job and go to college and do fun things like go snow skiing. However, I know the DAD's are very hard to get and expensive. I wish that was not the case. I hope things get better for you. Maybe he will settle down a bit as he gets out of childhood and the hormones are not so rampant.
     
  7. Sarah Maddie's Mom

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    Well, your younger son has only been D for a year and for many people the first year, or few, are easier ... so who knows where he'll be in another 4 years.

    That said, I have no doubt that D varies from person to person and that some have an easier time maintaining glycemic "control". But then, I bet one son is better at math than the other and one quicker with a joke than the other, and so on and so on. Really, the thing that screams out to me is how hard it would be in your situation not to compare the boys and not to show your frustration with your older son's more difficult to manage D.

    The term "brittle" is little used these days. That doesn't mean that it isn't relevant, just that it's a bit dated and probably you'd want to be very sure that your older son doesn't begin to see himself and his health as "brittle".

    Jmho.

    Best of luck getting some answers.
     
  8. buggle

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    My son has huge variations in TDD. We follow him with CGM and adjust basals and bolus ratios often. He has "stable" periods where he has similar patterns for a few days. But then, his TDD will drop from 26 to 8 and we'll have to change everything to prevent dangerous lows.

    Could your son still be producing insulin? My son still has a decent C-peptide level. Our endo calls it a remitting/relapsing form of diabetes. The autoimmune response seems to let up at times and then ramp back up. When he was in a period of high insulin usage for about a month, he was part of a study -- so they did labwork including a fasting C-peptide and antibodies. I was surprised that his C-peptide was fairly high when he had been at a high TDD for several weeks. His antibodies were through the roof -- higher than at diagnosis. So, with limited info, our guess is that he is under pretty significant autoimmune attack at different points and then it sort of lags, his insulin dosage goes down, then it all starts over again. My point is that if we tried to keep him on the same basal rate all the time, he'd be in the hospital. So, we just react to whatever his body is doing at the time. But we rely on CGM. We had a lot of problems when his Navigator bit the dust. We're using a Dexcom now and we're starting to get things under control a bit better.

    Here's a recent thread discussing these erratic patterns. Other kids have similar patterns.
     
  9. Ali

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    This has been me for most of my life-but without any of the testing you have done. As a female I also had lots of hormonal impacts. But I too have wondered about underlying insulin production. I have less extreme variations but it is still there, I frankly assume between hormonal issues going away, the pump and CGMS, and maybe my insulin production pretty well destroyed that I am seeing better control, but still not close to anything that with out a pump would not be below an 8 with strict eating, and without a cgms not be below a seven. ali

     
  10. TheFormerLantusFiend

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    Brittle is not a well defined term. Some doctors use it to mean people who are in and out of the hospital with DKA and hypoglycemia; others use it to mean people whose blood sugar varies a lot or goes up and down without obvious reasons.
    The most recent time a nurse described me as brittle, she said, "He says one unit drops him 60 points- brittle!"
    By that definition, all small children are brittle.
     
  11. Kazee6

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    The only person I've heard described as "brittle" was a little girl whose parent's we met at a fund raiser for her DAD. Up until that point, I had never heard the term and once they described (their definition) her D and treatment it sounded very similar to Wyatt's. This little girl was being home schooled because of her severe fluctuations. We are lucky to have a wonderful nurse at school, who adores both my boys and takes care of them like they were her own. I'm not sure we would have made it through the last four years of elementary school without her. We adjust his basal rates frequently and have changed them so many times, that I sometime forget where we are if I don't check the pump. I try very hard not to compare the two, although they love to compare BG's to see who has the better number. I'm just worried about what the severe changes are doing to his little body long term.
     
  12. Flutterby

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    Brittle is an outdated term. Its not a different form of diabetes. It was once used to discribe someone who was/is having a hard time 'controlling' (I HATE that word) diabetes. It usually means things like wild bg swings and high insulin sensitivity.

    I can image how hard it must be to NOT compare to kids. But they really are in different places. One child has been dx for a long time, the other about a year and may still be honeymooning. Once is more experience in bg checks/carb counting/insulin dosaging etc.
     
  13. Bigbluefrog

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    Sounds like puberty and diabetes.
     
  14. Charlotte'sMom

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    I'm just guessing, but I would think that gastro problems could affect bg. If he's not digesting food the same way every time, it would definitely affect the consistency of his blood sugars.
     
  15. dejahthoris

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    I have a friend whose daughter was dx at 3 yrs old. She is 14 now. When she was in elementary she said sometimes she would drop 200 points in an hour! IT WOULD DRIVE HER CRAZY! Her daughter still has a tendency to go low at night but not as bad, and not during the day. I think from what I have heard from people this (ie extreme fluctuations in bs levels) can be the way it is with some children because of hormones. But I am pretty new at this .
     
  16. PatriciaMidwest

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    That's must really be challenging, hat's off to you (and the OP) for managing all this. The study he was in is very interesting and it does make sense. I've always chalked up changes in my DD to hormones/growth, but who knows, it could be the autoimmune angle you brought up.

    It makes me think of Multiple Sclerosis, where there are 4? distinct categories, including the Relapsing Remitting type. I wonder if someday they will have different categories for Type 1. Sometimes I think the docs are too quick to just paint T1's with a broad brush (insulin making cells have died).

     
  17. denise3099

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    Stomach problems CAN cause BS problems and the other way around. If you have a gastro issue where you aren't absorbing nutrients then of course your insulin will react differently. And if you're high all the time and slightly dehydrated all the time then of course you will have constipation and tummy aches.

    Get thee to a gastroenterologist. My 8 yr old just had a endoscopy recently for tummy problems. they take a sample to make sure about celiac and other things. In dd's case she has allergice esophigitis--she's getting a painful allergic reaction in her throat. There a about million things that could be wrong and a gastro is a good place to start.

    Regarding the "brittle" D--some ppl react stongly to insulin and some to excercise. Some kids go low at school and high at home b/c even just being in school takes a toll. DD used to go low during her violin lesson!! She is lower when she is learning a new piece. Start with excellent records. Consider cgm. And there are services that can help you track patterns and make recommendations. Here' one I hear about here (I haven't used them but maybe others will chime in with their experiences.)

    http://www.integrateddiabetes.com/
     
  18. czardoust

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    Sounds just like Katerina. I would not be surprised if some day a scientist "discovers" that there is more than one kind of T1D out there. The thread began with a description of two brothers who react totally different with the same management, they sound just like my mother and her sister, Wanda. Mom has always been a "great diabetic", stable, manageable, predictable, and very controlled. Wanda, all over the place. Both T1D's, same food and insulin, etc. Just very different in how their bodies react. Katerina's T1D acts just like her great-aunt Wanda's. 200 BS drop overnight is not rare, and a 200 drop in one hour has happened too, on many occassions unfortunately = but that was because her original BS was HI and obviously had to come down that much.

    Brittle is a term that was used from long ago, used to describe people who had very little chance of survival because their blood sugar was so erratic and unpredictable (leading to lows that kill, average lifespan 20, we're talking a long time ago). I've heard an old school nurse call Katerina that when she was in kindergarten and 1st grade. All I can say is I'm happy she was transferred to another school. I'll have you know my "brittle" aunt, dx'ed at age 10 just like my mom, is now 69 years old. :)
     
  19. wilf

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    In my experience, application of the term "brittle diabetes" simply means that the medical team hasn't yet managed to come up with an appropriate insulin regimen for the person in question.

    You don't provide any information about your sons, such as age, weight, activity levels, etc.

    Sounds to me like the problem with your son who is "all over the place" is an inappropriate insulin regimen which is causing series of lows and rebound highs with related insulin resistance.

    I would ask your endo to work hard on developing an appropriate insulin regimen for you son. Alternatively start posting numbers here and get some constructive feedback. :cwds:
     
  20. Kazee6

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    Wyatt is 9 and Lucas is 8. They are actually the same weight 63pds and to Wyatt's dismay the same height too. They are both always on the go, with rarely a down moment except at bed time. Both play baseball, basketball, soccer and karate. They are like having twins, they just happen to have birthdays a year apart. As stated previously I do my very best not to compare the two at any time for any reason, not just diabetes. They however, have created a game out of who can have the better BG numbers.

    Currently Wyatt's regimen is:

    basal rates: 0700-1100 .35, 1100-1400 .40, 1400-1800 .35, 1800-0700 .40. This is the current rates as of today though and changes frequently.

    bolus: 1:15

    correction: 1 for every 80 over 150

    We change things on a weekly base if not more freuquently to adjust for his varying numbers. He has a significant history of seziures with lows, so we are very careful to keep him about 60 at all times. I will post some of his daily BG's if you'd like. Right now I adjusting his night time basal because he's been waking up with numbers over 200 the past few mornings. Even with 3 am checks, which are just about the only time his numbers are in the "normal" range. I know the only real answer is to keep changing things until we find something that works, but after 4 years you'd think we'd have a better idea of what works and what doesn't.
     

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