I have a 17 year old daughter who was diagnosed 16 years ago. She is very brittle. She gets sick ever month during her periods with high ketones. She can go from 50 to 400 and back to 50 all in the day. Also, she has been getting blood sugars of 48 at 3:00 am and was just diagnosed with the dawn phenomenon in the mornings. She has no control but tries very hard to get control. The doctors don't seem to know what is happening. I think if she does not get in a research program she will die just like her dad and aunt at the age of 30 and 32.
I asked her doctor the last time she was in the hospital with DKA if we could find her one and she said i would have to find one my self because she didn't know anything about research programs about these problems. Please help!
I can understand your concern about your daughter. In general it sounds as though she is getting too much insulin; but without knowing a great deal more it would be improper to give any specific advice. In the past this sort of story was referred to as "brittle" diabetes with the inference that it was a special subdivision of diabetes that was difficult to control. Nowadays it is generally accepted that these sort of situations are best dealt with initially by a diabetes care team that includes not only a doctor; but also a nurse educator, a nutritionist and either a medical social worker or a clinical psychologist or both. The reason for this wide spread of skills is that the underlying problem may not be strictly medical; but rather a failure to understand the general principles of home management or some important psycho-social issue. And as you will have gathered a team like this is primarily concerned with meticulous clinical care rather than with research.
If your daughter's own doctor is not able to help you, the next step would be to talk to the nearest office of the American Diabetes Association, or contact the Division of Endocrinology at the nearest Children's Hospital or Medical School.
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