My brother is 12 years old and has been diabetic since he was 1 1/2 years old. He has been quite ill for the past 5 years and my mom and his specialist have not been able to keep it under control. He was recently placed on the pump and it has not helped the situation. He has not been in school for 2 years because his blood sugar is so out of control. He is averaging a hospital visit every month, if not more. In fact, he is currently in ICU trying to increase his bio-carbs which were dangerously low. Generally he is admitted to the hospital to get his body out of ketoacidosis--he has lost feeling in his shoulders and arms on several occasions.
My question for you is this: is there any work being done with brittle diabetics that could help this situation? My mom was referred to a program, but when she called them, she was told that their focus is on management. My mom is constantly being told that the problem lies in management, but I do not agree. My family is full of insulin dependent diabetics--my older brother, my uncle, and my younger brother, and we are very cognizant of their needs. My mom is always with my younger brother monitoring his activities--they are never apart. I realize that management is vital, but in this case, it is not the only criteria.
There are several published articles about the causes of brittle diabetes; if you can find access to Dr. Julio Santiago's commentary on why it happens, you'll find that it's most likely an interaction between the medical management and psychological issues like parental overprotection.
It is very important that a diabetes team that includes a pediatric endocrinologist plus experts in counseling be on your brother's case.
They should be able to figure out the causes of the problem. Then it's a matter of following their advice.
Original posting 14 Feb 96
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