January 14, 2003
Question from Greenville, South Carolina, USA:
Our son went on the pump about four months after two start-up classes. He was supposed to go to a two week follow-up class and another at six weeks, and I asked all summer about these because I thought it would be best for my son to have them out of the way before school started. He will be starting the seventh grade in the Gifted and Talented program at school and will be taking high school Algebra I this fall, the only possible follow-up class for him is on the first day of school, and he needs to start the year off on the right foot so I feel very strongly that he needs to be in school that day. He missed a lot of school last spring due to problems with infusion sets. He is very conscientious and that caused him a great deal of stress. Missing the first day will bring that feeling of frustration back, and I dare not think about what that will lead to. All of his teachers say that he is going to do great things, and our previous endocrinologist maintained that although diabetes is a crucial part of him, he should be in charge of his life, not diabetes. I would talk to his current endocrinologist, but none of his support staff will give him a message. They are severely understaffed and they guard him like Fort Knox. I can't speak to my child's specialist! I know that we need the classes, but they continually drop the ball, and I cannot allow my son's future to suffer because of it. This pump has caused our entire family more torment than his original diagnosis. I want to believe in pump therapy, but without careful clinical care, it has been a nightmare. I know what is best for my son, but I need help with this and I don't know where to turn. What should the parents of a child with diabetes do when what is best for their child's total care doesn't fit into the practitioner's plan? Thank you for any advice you can give.
There is a national shortage of pediatric endocrinologists. In your state, that is especially so, but you may wish to contact the Division of Pediatric Endocrinology at the university medical center to see if they have out-reach clinics. Your specialist should be fairly accessible by Fax or e-mail or phone. Insist on a call back, but keep in mind that your specialist may give his/her suggestions to the nurse who then may relay them to you.
As for insulin pump classes, the pump manufacturer likely has representatives in your area who can give you the dates of a class. At the university medical center in your state, I know there is a Certified Diabetes Educator who works independently from the practitioner also.
Additional comments from Dr. Stuart Brink:
Call the doctor and have the doctor call you back. If you need to speak to the doctor and cannot get messages to him, be more forceful. You, your son and your diabetes team may need to have a conference consultation visit and re-establish how to communicate such concerns since they are so important. It’s possible the doctor doesn’t know such communication problems occur. If you cannot solve the problem, you may need to switch to an alternative care team.
Additional comments from Dr. Larry Deeb:
I often worry about missing school too. I also understand the gross shortage of pediatric endocrinologists and the real frustration we have keeping up. I would ask and pay for a one on one consult with the educator.