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Chip Kobe, PhD, director of the Columbus Center for Behavior and Learning, Gahanna, Ohio, spoke on ADHD IN SPECIAL NEEDS CHILDREN at Symposium '96 (see MSUD Newsletter, Vol. 14, No. 2, p. 6 ). While preparing for the talk, he found little published on the subject of behavioral aspects of MSUD, so he decided to conduct his own study.

Last fall Dr. Kobe sent questionnaires to all the families on our mailing list who have children with MSUD, age 2 to 18. Of the 160 distributed, 85 were completed and returned. He was pleased with this response and is in the process of tabulating and reviewing them. So far the questionnaires have revealed a high frequency of attentional and social problems.

We parents have noticed common behavior patterns in many of the children with MSUD. We have discussed these behaviors informally at the Symposiums and shared through the Newsletter. Not all the behaviors create problems, but some can interfere with routine living and academics. Now the professionals are taking note.

Dr. Kobe will make the results of his study available to Dr. Dean Danner, a professor in the Dept. of Genetics at Emory University, Atlanta, Georgia. Dr. Danner spoke on gene therapy at Symposium '96. For years he has researched the genetics of MSUD and is now interested in studying the prevalence and origin of behavioral problems in the MSUD population. Are the behaviors a result of the diet treatment, the enzyme defect, or are they related to episodes of ketoacidosis that occur during illnesses?

Wouldn't it be a tremendous relief to know the problem behavior some of us parents have tried so earnestly to deal with is not just poor parenting? Identifying the origin is the first step in finding a way to prevent or improve this behavior in order to help these children live better lives.

A sincere thanks to all of you who took time to complete the questionnaires and cooperate in this study. As Dr. Danner said at the Symposium: the families make research possible. To fund and conduct a scientific study, Dr. Danner will need more help from the families as this behavioral study gets under-way. We have confidence you families are interested in this study and will continue to cooperate. We wish the researchers well.

Melvin Carruth

This letter is a tribute to my brother Melvin Carruth! We believe he is one of the oldest living African Americans with Maple Syrup Urine Disease.

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Transform

A Child's Life

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