My 16 month old daughter has been diagnosed with type 1 diabetes. How common is it to have diabetes so young? Is the long term prognosis any different for her than someone who is diagnosed when they are older? Is there much knowledge of the treatment and effects of diabetes at such a young age?

Being diagnosed with type 1 diabetes at this age is not as unusual as you might think. There are certain ages where there seems to be a ‘peak’ in the incidence of type 1 diabetes. The most common is about fifth to seventh grade age level, the next is the kindergarten to second grade age level, the next is age one to two years, and the next is in the 30s. Don’t misunderstand, one can develop type 1 diabetes at essentially any age, but certain times of life seem to have an increased frequency, but we do not know exactly why this is.

Long term prognosis seems no different. The key remains glucose control in order to minimize long term complications. There are folks out there with diabetes for decades in good control with no or minimal problems, while there are others with diabetes for just a few years who already have eye or kidney problems, but they have not been in good glycemic control.

The more pressing issue in a toddler will be the inherent variable of changes in appetite, variable activities, frequent concurrent illnesses, etc. Because of the concerns of hypoglycemia in an infant with an immature nervous system, many centers have a higher tolerance/goal for the glucose values and don’t initially want super-tight control. However, in many ways, having a toddler is easier because an older child or teen may quickly rebel about the lifestyle adjustments in taking shots, getting glucose values, and meal adjusting. The growing infant will have no comparison — this will be an on-going “natural” part of her life.

Good luck. A parent support group may be helpful. You may want to consider the Chat Rooms at this website or contact your local American Diabetes Association and Juvenile Diabetes Research Foundation affiliates or ask your daughter’s diabetes team.

DS