Diabetes - Type 1 Community
Hope I'm trying to do the right thing
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This patient support community is for questions related to juvenile diabetes including Celiac disease, depression, diabetic complications, hyperglycemia / diabetic keto-acidosis, hypoglycemia, islet cell transplantation, nutrition, parenting a diabetic child, pregnancy, pump therapy, school issues, and teens with diabetes.

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Hope I'm trying to do the right thing

Here's my dilema..I have been caregiver to a young adult for many years.He has very difficult to manage type 1 diabetes(diagnosed in infancy) Its difficult enough that his file has for many years used as a teaching tool for other Dr's ,as of those difficult to manage cases that don't follow usual diabetic guidelines..He has for as long as I can remember,and before my time.always had a ridgid diet,and activity schedule.As too much activity can make him dangerously low(19 is the lowest I have seen,and he was still walking) However.If you gave him a candy bar etc that low ..He would shoot up to 400(he was given a snickers bar once and was off the meter) Also when High he was given 1 unit of insulin once..and dropped to 22 (he was almost 400 prior the unit of insulin)So he can be very sensitive. So his Dr's have always had me keep very strick guidelines with his diet,and activity etc ( I also should mention he is developmentally challenged,with some added obbsessive compulsive problems which adds to the mix) The problem arises when he is away from home..I try to accomodate when I know he will be active with an extra carb or 2 for breakfast..and then again for lunch.But don't like to on a constany basis for fear of it coming back to haunt us later with health problems.He is an adult so goes daily to a work hab program..Instead of monitoring his activity..he has been allowed to continue working (sometimes very physiacal work) He of course will drop low (and can drop abruptly without warning ) And then will be given juice and crackers,on top of the already added carbs he had a t breakfast and then again in his lunch.And then come home low again,and need more before dinner..My advice has been to cut back the physical labor(especially on hot days) and there is a letter in his file from the Dr stating the same..I am concerned with serious heaslth issues coming later..I am concerned with changing his daily meals,and then all the extra carbs/sugars being added on top of that..Instaed of cutting back the activity,just for the sake of letting him continue on and on.He is not capable of making decisions on his own.And would go and go until it was too late.He is also heavily medicated for his behavior,and obsession problems.With many different medications including trileptal,geodon,zolft,and trazedone,and now linsopril for high blood pressure.I think with how unstable his diabetes has always been,and so many medications..They are playing with fire.Something bad eventually is going to happen..I do not want to appear difficult to those he is with during the work day..Nor have it seem I am trying to keep him from doing the extra's..Am I correct in asking his activity be cut back.Rather than feed him more and more..and using juice etc on such a regular basis rather than periodic emergencies as I have been taught?..The extra carbs,and juices etc..Have developed into a couple time a week,every week thing.. I feel it needs to be less..I asked his Dr for another letter..he told me he has written enough letters..And people need to "get it" And the letters he has already writen on the matter do not change unless his diabetes is miraculously cured.. Is not all the extra feeding etc constantly every week.going to cause big trouble soner or later ? his last few A1C tests have been high..Dr just shakes his head and tells me to continue to do the best I can (because knows the situation) My hope is if I can get all people across the board to understand the dangers of allowing him to do things because he wants to..and that having to feed him more and more,to accomodate that..Is eventually going to cause great harm to his health..PS he also does not usually know or tell anyone he might be low until he drops to the 30's and 40's..And  he has been to some of the best Endo's throughout his life..But with his disabilities and mental health issues mixed in with his diabetes.He can change in a minute sometimes on the best of days.Just over ruminating over something..So really think he should get back to a more basic routine before something happens..Am I correct or over worrying?
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jemma116
United Kingdom