Regarding the 1992 Symposium, our family had a wonderful time! The Sullivans and Toths obviously worked very hard in preparation for the Symposium and it showed. It is really special to watch the fellowship that takes place between the children. It is also great to be able to communicate about MSUD where people know what you are talking about (instead of the usual confused response that we are all used to). It struck me that talking about MSUD there is like talking about the common cold to the general public. I was able to get several specific dietary questions answered, which proved to be very helpful.
Dr. Menkes: It was fascinating to hear the process that he and his associate went through to determine the source of the maple syrup smell of the urine. Everyone felt a sense of gratitude toward him for all that he has done for MSUD.
Dr. McInnes: He mentioned that some doctors believe that the level of keto acids is what causes brain intoxication instead of the leucine level. Also, it was interesting to learn how much the leucine level can vary from patient to patient and even with the same illness and the same patient. (We are starting to find this is true with our son, Jordon).
Dr. Elsas: He suggested that if we are traveling, we can contact his office to find out where other metabolic centers are located. I hadn't realized that children with MSUD could lead a fairly normal life with 5-10% enzyme functioning. The leucine oxidation test was interesting and hopefully will be helpful to all of us.
Comment from a parent
- Written by Sandy Bulcher