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effects-complications of D in children who've had it for a while...

Discussion in 'Parents of Children with Type 1' started by arbequina, Apr 27, 2007.

  1. sam1nat2

    sam1nat2 Approved members

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    I also try not to think about this, but what I do think about is how far they have come in the past 20 years in treatment and how far we will be in 20 more years.

    A good friend who is a T1D, who happens to be a rep for a pump company too, was dx at age 12 (he is now 40"s). When he was younger he would pee in a cup, add a few tablets and get a "range" of his bg!! It could tell him if he was between 50-100 :eek:
    Now he is on the pump and sensor, keeps his bg between 80-120 about 90% of the time:eek: :eek:

    I can only imagine that in 10 years we will have such new devices that only make our lives easier (think how cgms is changing things) that or the ultimate we all hope for--a cure!
     
  2. Jeff

    Jeff Founder, CWD

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    I don't have the citation in front of me, but a recent study from Europe looked at how complication rates have changed over the years. Where once around half of adults with type 1 developed kidney disease, the new data shows an incredible decline -- people diagnosed young (under 4 I believe) had no kidney disease and those diagnosed older has around a 1.5 % change of kidney disease.

    This data is incredibly encouraging and offers evidence that the tools we now use -- frequent glucose monitoring, MDI or pumps, good nutrition, and exercise -- all work to make an enormous difference in our kids' lives.
     
  3. rickst29

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    Treatment gets EASIER with new technology....

    but your children (and us adults) have to USE the tools, otherwise bad complications are still very likely to occur. :eek:

    I'm now over, ahem, well I still pretend to be only "49".... and have ZERO complications. I'm lucky, but I also PAY ATTENTION. :D

    Teenage episodes of chronic misbehavior need to be unlearned and 'fixed' quickly... as the author of this Thread said, it takes only a few years of being really "bad" to cause major problems. I know of similar eye problems, and even kidney problems, in "kids" well under 30 (brought about by poor management).

    - - - - -
    If your child, 11 years or older, is having problems, I feel that a particular psychological practice called "Cognitive Behavioral Therapy" is more likely to be successful than "talk therapy" which is less behavior-directed.

    I don't know of any studies which find this to be true in treatment of young diabetics, but it *HAS* been found to be significantly more effective than many other treatment approaches in several studies of other specific conditions. If you/your child are looking for psychological therapy, I recommend asking for this method BY NAME.

    Disclaimer: I am NOT a licensed psychologist, medical Doctor, or Nurse. This is "lay" opinion.
     
  4. EmmasMom

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    I think this is important. I think some parents give way too much control over to their kids, and if they don't do a good job there risks are huge. With teens I'm sure it can be a hard balance, but they really need to manage their diabetes well for the best chance at a great outcome.
    I read a recent study that showed that kids do better and are less likely to rebel when parents stay very involved in their care and shelter them from some of the stress for as long as possible.

    My neighbor works in the Pediatric ICU and sees older kids and teens in severe DKA all the time. A 14 year-old boy came in in DKA yesterday with an A1C of 18.:eek: Holy cow! He actually had meal and blood sugar logs that were all fake and his parents had no idea. How does that happen?
     
  5. Barry

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    chances of death

    The chances of me killing him over cleaning his room greatly outweigh D causing his demise
     
  6. kel4han

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    I have learned that my dads blindness, amputations, dialysis and heart disease are a result of his lack of education, and his "I dont care" attitude. He was never cooperative. Never had an a1c test! He is 59 years old! Did he try to manage himself? Of course. Did he go that extra mile, NO! He gave the minimum. It was too much work to do better, and he was afraid of hypos. HE was on a 70/30 mix since diagnosis at age 32. He is a smoker. Always been the hardest worker, never sat around the house, always busy. The problem was that he came from a dysfunctional family and didnt have any concern for his own health. HE tried. But we all know with "D" you have to fight. And you cant give up for weeks, months, years. Knowledge is power.

    All of us here on CWD are here for a reason. Because we know that knowledge is power, and none of us here will have children that end up with complications becuase of this. We will raise them to understand every aspect of what they are dealing with. They may fall off track, have a 13% a1c. But by us being so involved, educated and concerned they are safe. They will find the way back to caring for themselves. Things are 99% better today than they were back then. Most people were on NPH and 70/30......thats a hard diet to follow. They didnt test before and after every meal. I have only been diagnosed 13months, but I dont worry about myself. (thats a lie) OK, sometimes. But I know my dad is where he is becuase he didnt care. I care. And, I am obsessed with Maddisons care. It has helped me to take better care of myself actually, becuase I know she needs to see me NOT end up like Grandpa, to be a motivation. She loves to check her blood sugar, and give her injections, in her words "I like having "D" to take good care of myself"
    She learned that from somewhere, so I know she will be ok.
     
  7. Ali

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    I am also healthy, after 36 years-I do have margianally high BP and am on medication. I do have the best eyes my Dr. has ever seen in a type one and no other obvious problems except having gone through a bout of frozen shoulder a few years back. I too come from the era of urine checks for sugar once a day, one shot a day and a low carb diet. I luckily was very active so probably kept my BG levels lower than the typical. I also ate healthily and never went on wild binges as a teen. I also have been blessed with good genetics but still-I have always worked hard at my control and when I was younger I was always irritated that those who were out of control got lots of support and help and me who controlled by skipping meals if I was high, monitoring as often as possible, etc. etc. and had good enough but not great numbers, had everyone just sort of pass me on in terms of care. As I got older I really had to push for help. The internet has really helped me over the past five years push for more help from my Dr. This site really helps because you are all so knowledgeable and pro-active in your kids care. Ali.
     
  8. Momto4

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    Our kids must be related!;)
     
  9. Amy C.

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    Some of you may have read this before, but my son had enough albumin in his urine that the endo prescribed an ACE inhibitor. He provided urine samples at a couple of endo visits and then provided a couple of 24 hour urine collections, all of which showed the presence of albumin.

    This happened 9 years after he was dx'd. He was on multiple daily shots up until that time with good control. His A1c tests were all in the 7s -- usually the upper 7s.

    I pushed to him to start using the pump which helps the control. His A1c is under 7 now. Combined with the ACE inhibitor, his kidney function is now normal. He just has to take this pill every day for the rest of his life.

    The treatment for the complications has improved over the years. I am hopeful that the medical science professionals and Philip can deal with the complications.
     
  10. Boo

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    I do believe that with the current tools available, the rate of complications in T1 patients will significantly decline over the years to come. Unfortunately, some will choose not to use the tools. And sometimes others who do monitor closely will encounter bad luck anyways.

    My job as a parent is to keep my son's BG level under the best control that I can while he grows up, while maintaining a balance of a "normal" life. By doing this, I'm setting the best example possible to model for him how to handle his diabetes when he goes out on his own. My son is quite capable of doing his own diabetes care, but knowing that those upcoming teen years can be tough, and that burnout is very common, I choose to do much of his care for him. He basically changes his own pump sites, but I always sit with him and talk with him and open packages/throw away trash for him, etc. while he puts in the new site. Every day before school we count carbs together for lunch, and after school we log his numbers from school. It's not made into a big deal, just a minute here and a minute there. I remind him to check his blood sugar and I remind him to bolus. When I am not around (like last night...I went out), he does a good job on his own and knows how to reach me if he has a question or just wants to talk about how to handle something. He's got so many years ahead of him to do this by himself, I feel better knowing that I can help a bit to lighten his load right now.

    I am amazed reading the posts about how different diabetes care used to be (and not that long ago even)! How scary it must have been for parents (and kids) back then...they couldn't get up twice a night and check blood sugars simply to ease their minds so that they could get back to sleep! I'll have to remind myself of that dose of reality the next time I am complaining about lack of sleep!
     
  11. TheFormerLantusFiend

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    Older type 1 diabetics

    Someone diagnosed with type 1 at age 22 could have had it for a while, uncontrolled. In older people, even within type one, it tends to develop more slowly.
    My endo and I are right now trying to figure out if I have early stages of gastroparesis. I was diagnosed at age 17, and I believe I'd had it for at least a year and a half by then. I've only been diagnosed for eight months now.
    I've been taking care of myself since diagnosis, but there's just all that time before diagnosis that I can't do anything about.
     
  12. OSUMom

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    My son is new to diabetes 6/06. He cares for today. I know the health care providers are a bit concerned about burn out for him. I guess all we can do is take it day by day - but for the most part he's on his own and we do what we can - communicate a lot and support him. I read threads like this and it worries me, but I'm hopeful.

    You know I read about how parents wake their kids up in the middle of the night to check BG, and I know you have to do this with children - but our dr has never told my son to do this. Any adults out there been told to do this just curious? It's never been a part my son's diabetes management plan.
     
  13. cydnimom

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    I have never been told to do this by my endo, and I don't do it every night. I will check if I have been active during the day, if I'm not feeling well or if my bs is under 7.0 (126) when I go to bed. I still have excellent hypo awareness, however, if I'm super tired it is less so. If my hypo awareness wasn't that good I definitely would check. Better to be safe than sorry.
     
  14. ecstaticlght

    ecstaticlght Approved members

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    Exactly!

    Being in fear of what can happen can be healthy for us as parents in small doses, but if we begin to let it overwhelm us it will feed into all sorts of fears the kids will develop, not only about their Diabetes, but also about life in general. I've seen complications from badly managed care and I've seen those that fall up the middle with up's and down's that do fine (although they have to really take greater care with the control now than ever) and I love to read about the positive outcomes.

    My son's father and step mother, have done nothing but live in the fear category and it drives my son up the wall to a point he refuses to maintain well at all for them. That is very much the downside. I personally don't want to go there.

    Balance in all things and a positive outlook are some of the best maintenance tools we have.
     

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