I have twin daughters who were born on April 5th, 2004. Born 14 weeks premature, both required insulin for a period of time. One no longer requires insulin, however, one of the girls has been diagnosed with neonatal diabetes. Laboratory work was done on my blood to determine if this was caused by chromosome 6. It is not. She is currently receiving four insulin injections per day, and, on occasion requires an additional injection to maintain a blood glucose below 300 mg/dl [16.7 mmol/L]. Would my daughter be considered to have type 1 or type 2 diabetes? What are the odds that this will be transient? What are some good resources for information on the long-term effects and consequences of developing diabetes this early?

My wife and I are hoping that this is a controllable disease, but we are having problems finding information regarding this topic. Most of the resource material available online is written for medical professionals, and it is beyond our level of understanding.

I’m afraid that your best source of information will still be your pediatric endocrine team since they will know the details of your child’s care and needs. You are correct that most of the information will be doctors writing for other doctors since neonatal diabetes is so rare. However, the basic principles of management are identical to all other ages, only more difficult in such a very young child. Frequent blood glucose monitoring will be a great help since you cannot otherwise know what you need to do at a given moment. Some have had great success with insulin pumps since this allows much greater flexibility. The best teaching manuals are Insulin-Dependent Diabetes in Children, Adolescents and Adults by Ragnar Hanas, M.D. and Understanding Insulin-Dependent Diabetes by Peter Chase. You can order those from CWD web site or through most on-line bookstores.

Some cases of neonatal diabetes are transient and others are permanent. It sounds like you have had all the antibody and chromosome tests that might help to figure out which apply to your child. None of the tests are 100% accurate. If you still have questions that are bothering you, please go back and discuss them with the doctors and nurses and other team members. It may be wise to ask for a special prolonged consultation so that you can do this at a time convenient to you and also to them, perhaps at the end of the day when time pressures are not so great.

SB