Jordan, born on June 29, 1991, is the son of Ernest and Glenda Groff from Pennsylvania. Glenda (our Food News editor) wrote about him for the Family History section in the December '92 issue of the Newsletter. The next year, she gave an account of a time when Jordan was seriously ill. ("He's Our Miracle," Dec. '93.) He has done very well since then.

Last year when Jordan started school, I had no idea how this was going to work. I couldn't imagine him sitting still for one hour, much less a whole day. School was in session three weeks when I received a call: his teacher was wondering if we had considered putting him on Ritalin. She felt it would not be fair to let him struggle with his schoolwork when there was help available. After discussing the situation with Dr. Morton, we decided to try a low dose of Ritalin. The results we got with a below average dose of the medication were amazing. Jordan also began with a tutor in math at this time.

In the hustle and bustle one morning, I forgot to give him his Ritalin. That afternoon I received a phone call from his tutor. Her first question was, "Did Jordan take his Ritalin today?" Thinking back, I did not recall giving it to him. That day his schoolwork suffered from his lack of attention. We quickly learned not to forget his Ritalin in the morning because the results were frustrating to him.

Part way through the school year, we started adding tyrosine in capsule form in the morning. Jordan would take 5 mg of Ritalin and 1000 mg of tyrosine. The combination seemed to work very well as long as we were consistent in giving them to him. When we missed the tyrosine, Jordan walked in his sleep. As soon as we started it again, he stopped walking in his sleep.

Over the summer, I discontinued the Ritalin and continued with the tyrosine. That seemed to work very well. When school started, we again added the Ritalin. This time it took 10 mg to accomplish the results we wanted.

One day I again sent him to school without Ritalin, because I had neglected to get the prescription filled. His tutor again could tell from Jordan's behavior that he had not taken it. Jordan told her his mother had forgotten to get him more. He came home with this message from his tutor: "Tell your mother to get your pills - you need them." Needless to say, that evening found me waiting at the pharmacy for his prescription. We learned he really depends on them for his schoolwork.

One disadvantage of Ritalin is the loss of appetite. Jordan's first school year found lunches untouched, and he wouldn't eat breakfast. He was starving when he got home, and could hardly get enough to eat after school. I was concerned, but he did not lose any weight throughout the school year. I told him if he isn't hungry at school, he must at least drink his formula. This year we have not seen the loss of appetite as a problem. Most days his lunch box comes home from school completely empty, and he is digging through the pantry and refrigerator for something to eat as soon as he is in the door.

We feel the advantages of Ritalin far out weigh the disadvantages. His schoolwork has dramatically improved. By the time he comes home, the effects of the medication have worn off, and he is his normal active self. When I go out to call him, I can often find him dangling out of the maple tree in our side yard. He also put a plywood piece in the tree as his tree stand and spends his evenings with a stick for his bow, hunting deer.

Jordan is still very active, but Ritalin has made his school life more enjoyable. The other students have learned what he may eat and bring the treats he may have. When hot lunch is brought to school, I often need to send something along to complete the meal for him, but most parents work very well with his diet.

We are very pleased with Jordan's health the last few years. It has been six years since he has been in the hospital. He does get the occasional flu that goes around. Last year, he spent only five days home from school which I thought was excellent. He is a willing helper when I need one and was delighted with another little brother this summer. So our days are full, busy ones.


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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