I have often wondered if I was the only MSUD parent who many times had to actually take my child's face in my hands and talk up close to him to get his attention or to stop him from talking continuously. Was it a normal thing for a child this age; or was it high levels; or Attention Deficit Disorder (ADD)? I always thought my husband suffered from it because he could never hear me when I asked him to do something, or if I was talking about my day! He just suffers from "Selective Hearing Disorder," and I will write a paper on it some day.

I turned to other MSUD parents to see what they had experienced. I found that in the pre-kindergarten and kindergarten age, there seemed to be very little concern about the disorder. I don't think I thought much about my own child during those years. Kindergarten is a very social based time with emphasis on motor skills, group cooperation, and basic cognitive learning. I did not worry much, as he could build with blocks, sing a song, color and paste, etc. Kindergarten is a fairly fast paced and less structured setting than in the primary grades. It isn't until primary grades, and with more structure and organization and less activity, that difficulties begin. Children are expected to sit and concentrate on reading, math, numbers and the alphabet, or story writing for longer periods. This is when many parents responding to my inquiry found their child could quickly fall behind if they were unable to concentrate or sit still.

We all seem to know that when levels are running even slightly higher than normal, we can see some hyperactivity and less concentration in our children with MSUD. In this respect I know that it can cause problems in school, because until the diet or illness is corrected, the problem is there. Many of us find that after an illness it takes a week or more to get the children settled back into a proper learning routine. At times they may have to relearn portions of their work because of the setback. This seems a form of ADD linked directly to MSUD and its control. Hence the importance of good diet control and constant blood monitoring.

I also heard from parents who have tried Ritalin for diagnosed ADD and are getting marvelous results in school. They report positive effects on their children's school work, such as having them stay on a task and carrying through their responsibilities without too much reminding or "nagging." A concern about Ritalin is that it suppresses appetite, and with MSUD that can be a real issue. It is important to work on correct dosages with your professionals so there is no weight loss. As one professional put it; you should try the recommended treatment for ADD. If it does not help, you will know a chemical imbalance is not the cause of the hyperactivity. You may have to look elsewhere for the reasons.

Some parents feel the MSUD is responsible for ADD; others feel we tend to blame too much on the disorder. It is very easy to allow more to "slide" with children with MSUD, because they already have so many restrictions in their lives. The stressed or tired parent may find it taxing to constantly remind or repeat instructions when the child seems not to hear them. These children require so much extra attention, it can be frustrating to follow through so often with simple instructions. It is easier to let it go, which can lead to behavioral problems.

So, what is the answer? I am inclined to think that only you can answer for your child. If there is concern, have the child tested. If you find your child meets many of the criteria for ADD, you may wish to try Ritalin. Work closely with your doctors and teachers. Keep your child's levels in the normal range and maintain good control of the diet. Each child with MSUD is unique, and you know your child best.

Thanks to the parents who took the time to responded to my request for your experiences with ADD. In particular, to Mrs. Carl (Marty) Zimmerman, who would be willing to share their experiences with ADD, hyperactivity and the use of Ritalin.

I hope you all have a wonderful new year in 1995. I will probably spend part of it pondering this MYSTERY THAT IS MSUD! Whatever did I think of before my son came along? I'd ask my husband, but he never listens anyway!


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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