From Helena, Montana, USA:
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.
Original posting 2 Dec 2007
Posted to Other Illnesses
Last Updated: Tuesday April 06, 2010 15:10:16
This Internet site provides information of a general nature and is designed for educational purposes only. If you have any concerns about your own health or the health of your child, you should always consult with a physician or other health care professional.
This site is published by T-1 Today, Inc. (d/b/a Children with Diabetes), a 501c3 not-for-profit organization, which is responsible for its contents. Our mission is to provide education and support to families living with type 1 diabetes.
© Children with Diabetes, Inc. 1995-2017. Comments and Feedback.