My five month old baby has been diagnosed with neonatal diabetes. I understand that this is very rare. I know just about everything there is to know about it. I know there are data to prove that pig islets work and that the antibodies cannot harm the islets. This is the viable option to me. I know that is a tough issue for a lot of doctors that have beliefs that it is not proven. What are your thoughts and do you know of anyone that specializes in this area or something similar?

A great deal of work has been done on the use of encapsulated porcine cells in the treatment of autoimmune diabetes. So far as I know there have as yet been no human trials. It has the great advantage that it would only involve a minor outpatient procedure and would require no immunosuppressive drugs. Meantime, there is still a possibility that your child’s diabetes will not be permanent.

DOB
Additional comments from Dr. Stuart Brink:

Sorry that you are having such a difficult time. Neonatal diabetes is extremely rare. There is a great deal of research being done around the world to answer your questions. However, research is a slow and deliberate process to get answers and not mistakes. I am at the International Diabetes Federation meetings in Mexico City at the moment and we have talked about this condition. I just came from the International Society for Pediatric and Adolescent Diabetes meeting, and we also heard research updates on this condition. So do not despair that there is no research ongoing.

Transplantation of islets or pancreases is a new and not yet proven treatment. While it would appear that this would cure the situation, you would not want a cure that would also cause other major problems like cancer, leukemia or overwhelming infection. Cures that would increase the likelihood of such problems — morbidity and mortality — would be bad treatment. You should feel comfortable asking to speak to your doctors and health care team. If you feel that they are rushed, then ask to have a special time on a weekend or evening to have all your questions answered. Most doctors and nurses I know will arrange such a meeting with you.

SB