From Columbia, Missouri, USA:
My 14 year old daughter has had type 1 diabetes for six years. We were in pretty good control (7.0, 8.0 A1cs) for many years. However, we have struggled for the last two years especially. Her A1c was hovering around 9.0, 10.0 and 11.0, but just recently it was 13.3. I am terribly worried about her.
She is a great kid. She has all straight A's, is involved in school sports, goes to the gym with me, has a sweet disposition and is not into drugs or alcohol. This is the only area of her life where she struggles. And it's a big one.
We see the endocrinologist every three months and have taken her to a counselor to help her with her struggle to manage the disease (we've gone together). I have been involved with her care but feel out of control to help her.
I feel with this latest number we are in a crisis and I'm not sure what to do first to help.
- What is the life expectancy of a type 1 who is not in good control?
- Can she minimize any long-term damage if she is able to get in control from this point forward?
- How long would it take for her A1c to show improvement? Weeks, months?
- She has a strange rash under her arms, which just appeared. I read that some diabetics have skin problems if they are not in good control. Do you agree this is possible? We see the internal medicine doctor tomorrow.
- She is at an age where she truly doesn't comprehend the damage she is doing to her body. How can I help her understand the severity of the illness in a way that will translate to better self-care?
- For my own information, what will be the first evidence of harm? Eye damage? Kidneys? Where does the damage usually show up first?
- She is on five shots a day, Lantus at bedtime and Humalog the rest of the time. Do you have any advice regarding her insulin regimen?
- Do you know of any other teenage diabetics who would be willing to serve as a "online buddy" for her to have someone to talk to?
It sounds like major problems that you are facing with your daughter. The most important advice would be to talk with your diabetes team, perhaps on the phone or with a separately arranged long consultation so that all these questions can be answered specifically. The most likely explanation for such lack of control for such a long period of time in a teenager is omitted insulin. Food indiscretions certainly can be part of this rebellion. Omitted or falsified blood glucose readings would also go along with this dilemma. So, asking what your team thinks of these problems, since they know her for so many years, would be the best place to start. Some teenagers have some sense of future futility because of how difficult diabetes management is. You are using an excellent basal-bolus regimen but it obviously doesn't work if there is omitted insulin or food problems. Many teens get into more difficulty maintaining control because of hormone changes of puberty but many others figure out ways to counterbalance things. The key question is why is this not taking place.
Direct supervision of blood glucose testing and all insulin would answer some key questions. Almost all of the modern meters have downloading memory capability so it would be easy to determine whether or not blood glucose tests are misreported in a logbook or simply missing. The more tests are missing, the more likely that insulin is also being omitted.
Some kids omit insulin because it's difficult to take so many shots. Some omit insulin because they are fearful of hypoglycemia, have had one or more severe hypoglycemic episodes/convulsions/unconscious reactions and do everything possible to avoid a recurrence despite the long term risks of hyperglycemia. Some omit insulin because they are worried about their weight and food intake and have discovered that omitting insulin allows them to eat excessively without gaining weight because of the glycosuric calorie losses. We have called this diabulimia since it is a form of eating disordered played out via poor glucose control in those with diabetes.
The earliest complications depend a lot on length of time hyperglycemia has occurred as well as some familial, individual susceptibilities to such damage in the blood vessels that are clogged or leak. Microalbumin is often the first complication detected on laboratory testing. Background retinopathy (small hemorrhages or leaking areas in the retina) are often the next. Subtle forms of nerve damage often go undetected. Limited joint mobility may often show up with prolonged hyperglycemia and high A1c. All said and done, go back and discuss your specific concerns with the diabetes team who knows you and your daughter the best and figure out what needs to be done so things can be turned around even if this means more direct parental supervision for the next year.
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