My two-year-old daughter was diagnosed with type 1 diabetes in September. She also has diabetes insipidus. The doctor told me he thinks she has Wolfram Syndrome which scares me after reading about it. My daughter has excessive urination to the point were I have to change her almost hourly and she is soaking wet. She also has epilepsy and is a carrier of sickle cell anemia, too. Does this sound like Wolfram to you? What should I expect to maybe encounter in my daughter’s future? Are there any resources or clinics that I can refer to get some additional information?

You should be working closely with a pediatric diabetes/endocrine specialist since Wolfram syndrome is quite rare. It involves problems in the central nervous system and includes diabetes insipidus, diabetes mellitus, hearing problems, vision problems, other nervous systems problems – could be epilepsy – and difficult management decisions. However, there are medications for almost all of these conditions. Often, there is a very strong family pattern and we believe that this is a genetic abnormality. It may be worthwhile to travel to a large, academic pediatric endocrine center and consult with genetics and endocrinology together to help figure out best treatment strategies if this is not available locally. Seattle, Portland, Denver, San Francisco all have such facilities if they are not available in Montana.

SB