Our seven-year-old daughter was diagnosed with type 1 almost two years ago and has autoimmune thyroid disease. We live in Anchorage, Alaska where there has been one pediatric endocrinologist in the entire state. The doctor has now moved out of state and the nurse at the specialty clinic will be caring for the children. A pediatric endocrinologist will be coming from San Diego for three days every other month. We have not had good experiences with our Emergency Room department being knowledgeable about type 1 and treatment/care. Our general pediatrician is excellent, but has told us that our child’s special needs are above his level of expertise. Other families have said they will fly to Seattle, Washington for treatment and at least one other family will be moving to the lower 48 to be able to have specialists for their child. What suggestions do you have? Is a nurse qualified to handle all of the diabetes and thyroid care? Who cares for her during severe illness or if there is an emergency? Can an endocrinologist that cares for adults handle pediatric needs?

It is sad that there will no longer be a certified pediatric endocrinologist in Alaska. You should ask the questions that you posed to us directly to the nurse and see if she is a certified diabetes educator and ascertain her experience with children, adolescents and families with diabetes since this is the best way to answer your questions. In many offices and clinics around the world, nurses do an excellent job working as part of a multidisciplinary team with physicians, dietitians, social workers and psychologists so that ongoing care needs can usually be handled very well. I would assume that the nurse remaining will affiliate either with a diabetes center and/or adult endocrinologist/diabetologist for appropriate back-up, but this, too, should be known and transparent.

In terms of emergency situations, these are generally avoidable, but would include severe episodes of hypoglycemia and diabetic ketoacidosis. Most Emergency Rooms should be able to provide care for these types of situations and, with the assistance of your pediatrician who will know you and your child on an ongoing basis, should be able to take care of whatever develops. Adult endocrinologists, while not experts in childhood needs, should also be available to assist and contact pediatric endocrinologists or intensivists at other Children’s Hospitals in the rest U.S.

SB