February 15, 2002
Question from Knoxville, Tennessee, USA:
My 16 year old niece, who was diagnosed with type 1 diabetes diagnosed at age 13 and lives in New Jersey, has had stomach pains for a year and her sugar cannot be controlled. She is now in the local hospital and was diagnosed yesterday with bartonella (a cousin to Lyme disease). She had pain yesterday and after a Cat scan they found two blood clots in her lungs. She will be on a heparin drip for nine days for the blood clots and then the pill form for 90 days. She will also be on medication to control the bartonella.
She is taking birth control pills and last year her appendix was removed thinking that would solve her pain. When she is home she does not watch what she eats, saying if she eats sweets she can just give herself more insulin. Shouldn’t someone with diabetes be on a special diet and eat at specific times of the day? She does not. She needs special attention. I don’t feel that the hospital she is in can help her. We need to find a hospital that specializes in teens with diabetes.Can you give me the name of the best hospital to handle her?
I realize you are writing third hand for your niece, but you present a confusing, complicated situation. Is the family looking to transfer her to another hospital now to control her diabetes while her other problems are being diagnosed and treated, or are they looking for more long term help with education and management of her diabetes after her acute problems are treated? Do they want her to change doctors/hospitals, or is this your concern? They may wish privacy and may not have told you the whole story, or they may be seeking your help to help them find alternative care.
If your niece is having a hard time coping with the stress of diabetes, she will probably need ongoing psychological counselling which in my experience is best provided by someone locally who can work with the family and her diabetes doctors and other educators. If the family feels she has had inadequate education and management, then she might benefit from seeing another doctor who works with a nutritionist, diabetes educator, and social worker, psychologist, or psychiatrist.
If the local doctors are having trouble either diagnosing and treating her non-diabetic medical problems, or are having difficulty controlling her diabetes during this present illness, then she might benefit from being transferred to another facility with more specialists available.
If you can find out from the family more information regarding what help they are seeking, how far they are willing to travel, and whether they want her transferred to another hospital now or are looking for more help when she has recovered from her present illness, we might be to make some suggestions. For problems like this, it’s always better to stay as close to home as possible if you can get the care you need.
You say your niece lives in New Jersey. You didn’t say what area of New Jersey or how far the family is willing to travel. There are several good facilities in New Jersey, New York, and Philadelphia. First the family has to decide what they really need, whether to control all the immediate problems, or for more long term care after the immediate problems are stabilized.