From Edsbyn, Sweden:
I have a 20 year old daughter who has been a diabetic since she was five years old. It has always been very difficult to get her stabilized. Her blood sugar goes from "Hi" to "Lo" several times a day. She has always doing sports, playing football and "bandy," an ice sport popular in Sweden.
The last couple of years, her diabetes has worsened. Last year, in August, she had to go to the hospital and she had been there until recently. She has been sleeping at home for a week. She has a night watch taking her blood sugar every hour and more often, if the situation demands it. Her body doesn't take up the insulin as it should. She has insulin resistance. She hides the insulin in "deposits" and it releases often in the night when she goes to sleep, but can do it in daytime, too.
She has Hepatitis C and no one knows were she got it from. None of us has it! She has started treatment for it, taking shots every week and tablets, too.
Now, her blood sugar is often too high, but they can't give her too much insulin because she it will be released all at once and then she has to be given glucose directly into her vein. Her doctor says this will end some day and she will go back to her "normal difficult form of diabetes." They have had plans to transplant new insulin cells into her, but before that she has to get rid of her hepatitis. She has the most difficult genotypes and, until now, her virus level has not dropped at all. She has taken a nine week treatment.
No one in Sweden has a clue what's is going on with her, but her doctors say there have been other cases, all of which have returned to normal after a time. But, they didn't all have Hepatitis C, too!
Every night she has some kind of fluid, natrium chloride, if she is high and glucose if she is low and doesn't respond to food.
Have you seen cases like this in the U.S.? Do you know how to get my daughter's diabetes "normalized?" My daughter wears a pump with short-acting insulin.
They have talked about implanting a pump so the insulin will work better, but, right now, they are waiting for the other treatment to take. In the meantime, I want them to start working on Plans B and C because my daughter is at the beginning of her adult life.. She is a prisoner in her home. She can't plan anything. She is so tired after sleeping in hospital for eight months. She feels her doctors are just sitting there waiting for nature to take care of the treatment. Please give me some news, ideas or similar cases I can give to her doctors.
The situation you describe is very rare and must be very frustrating for you as parents and also for your daughter. I might suggest that you contact either Dr. Johnny Ludvigsson or Dr. Ragnar Hanas and have them see your daughter in consultation to see if they would agree with her treatment plan, give a second opinion, etc. Could it be that the chronic liver infection is the culprit? Is there any evidence of depression, omitted insulin, not remembering to give bolus injections for meals, etc.? This can occur even in those wearing insulin pumps.
Original posting 1 May 2006
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