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What I expected to get out of the MSUD Symposium:
  • a better understanding of TPN.
  • more information about DNPH.
  • more information about home managing.

From talking to other parents, I felt I wasn't doing all I could to keep my son Cory (who is 9 years old) out of the hospital. Cory has been admitted to the hospital over 30 times. Six to eight of those admissions were for surgery. He has had three hamstring releases; other surgeries were for putting tubes in his ears. After every hamstring surgery he was released from the hospital, only to return within 1 to 2 days, with a new set of problems.

Cory's doctor didn't seem concerned about these events, and never gave me any more information about other things I could do at home to help Cory stay out of crisis. When asked by another parent about using DNPH and TPN, he would not give a positive response and sometimes you got no response at all.

Even with all the information I received at the Symposium, I needed a physician to help me use these treatments. This problem was also solved at the Symposium. Dr. Helen Berry from Cincinnati, Ohio was one of the speakers. I live in Lancaster, Ohio, about a 2ΒΈ hour drive north of Cincinnati. I talked to Dr. Berry a number of times at the symposium. Sandy Bulcher, another parent from Ohio, and I had the same doctor for our sons. We told Dr. Berry about this doctor whom we shared for 3 years. I explained the things that had happened to Cory these past 9 years.

Dr. Berry helped find me another doctor in the state of Ohio. She even went the extra mile by calling the doctor and letting her know all about Cory and the problems we have had. She was so very helpful.

This being my first MSUD Symposium, I felt I picked the best one to attend. I got all my questions answered, plus a new doctor to help me with using DNPH, Home Management, Sick Formula (which I never heard of before) and TPN if the need would ever arise to use it.

We are now seeing Dr. Nancy Lesilie, with whom I couldn't be more pleased. I had some questions about some medication Cory was on, and she sent him to a neurologist to get those questions answered. Cory has since had some medication changed and is now getting over some side effects that the other mediation caused. He is doing much better. He didn't go into the hospital the last two times he became ill. Because of better home management and "Sick Day Formula" (which we call "Super Milk"), Cory has become a lot easier to handle day to day. His personality has changed and his problems at school have improved due to the changes in his medication.

I feel I got so much more out of the Symposium than I could ever dream of. I finally feel I am doing everything I can to help Cory get as far as he can in life. It was well worth the time and money.

I want to thank everyone in Missouri for planning and organizing a great Symposium. I also thought you would like knowing the positive effect it had on our family's life.

I hope this next Symposium in Ohio can be of as much help to at least one family or child as this one was to me. Thanks so much

CHANGE THE LIVES OF MSUD ADULTS AND CHILDREN

The MSUD Family Support Group is currently funding several research projects and we are proactively looking for researchers interested in developing new treatments or finding a cure for MSUD. Significant funding is necessary if we are to accomplish this goal.
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