Daniela Hudson sent a letter written on June 24, 1994. It gave an account of her son, Glenn, and his very late diagnosis of MSUD. He has done quite well since he started on the diet.
My name is Daniela Hudson. My husband Glenn and I have two children, Glenn Daniel, 8 years old, and Amanda, 5 years old. Glenn has intermediate MSUD and was diagnosed three years ago at Children's Hospital in St. Louis, Missouri. He was 5 1/2 years old.
I knew from early on that something was not right with Glenn. That was especially clear after my daughter was born and I saw how she developed. It was like night and day. Glenn as a baby was always sleeping and a poor eater. He fell asleep during feeding. Amanda was very alert and very good at feeding. Glenn never learned how to turn over; I taught him how to crawl. Amanda did all those things on her own.
Glenn didn't learn to walk until 18 months and then only with the help of a therapist. Amanda walked at 11 months. Glenn didn't start to talk till three years of age and Amanda started much, much earlier. I also noticed "attacks" or "spells." He couldn't keep his balance, and had slurry speech, glassy eyes and sometimes vomiting. Every time that happened, I took Glenn to the doctor. They either didn't know what was wrong with him or by the time I got there, the "spell" was over. Once a doctor saw it, and did all kinds of tests, but never found anything.
At the age of three, he was hospitalized 10 days for observation. Nothing. At the age of 5 1/2, he had the worst "spell" ever and was transferred to St. Louis Children's Hospital. My husband is in the Army, and we were stationed at Fort Leonard Wood, Missouri at the time.
Glenn's spell started in the afternoon and lasted the whole 2 1/2 hour drive to St. Louis, continuing after we were there. I told them Glenn's history, and they started testing. Within hours I had the news. Indeed Glenn had something with a name and it wasn't all my imagination. To my husband and me, it was a great relief. Glenn was put on a diet of 14 grams of protein from food and on formula called Maxamaid. The formula was quite a challenge. Glenn did not like it at all. The diet was no problem. He never ate dairy products and only had to give up hot dogs and bacon. He didn't give us any struggle with that.
Then came our move to Hawaii. The first few months were hard. We were still getting used to the idea of Glenn having MSUD, his diet, blood tests and starting kindergarten. There was financial hardship because of the move and hospital bills. But we got through it.
Receiving your MSUD information packet was very helpful. I especially enjoy receiving the MSUD Newsletter. It makes us feel that we're not alone and has lots of information. I also know that I can reach out to someone who knows what I'm talking about.
Glenn has a great dietitian here on the island. She, Robin, decreased Glenn's protein from 14 gm to 10 gm after seeing his blood levels. From measuring his food by cups and spoons, we went to using a gram scale and exchanges. Robin also added solutions to his formula. They made quite an improvement in Glenn's behavior. Robin also gave me some hints on how to prepare formula so Glenn would like it. Instead of water, we use Kool-Aid, and that did the trick.
Glenn also has a great doctor. Dr. Hsia was always there when Glenn was not well. Glenn was hospitalized twice during our three years on the island. The first time it was for headaches that affected his everyday life. A teacher from school had called and told me that Glenn was not himself. Once in the hospital an MRI revealed acute sinusitis.
The second time he had a virus that caused him to become acidotic from fever, vomiting and not being able to eat and drink. Once in the hospital, he got better fast.
After being on the diet and on formula (Ketonex 2) for three years, Glenn is doing very well. In school, Glenn is an average student. He goes to special education part time for reading, writing and math. He does better in a small classroom for those subjects. He goes to speech therapy once a week and is in his regular classroom for everything else.
Glenn just got done playing baseball. It was his first sport. He had fun but it tested his patience when he had to be in the outfield. He liked batting a lot better.
Glenn loves to be outdoors. He also loves to play Nintendo, Sega and cartoons. He gets along with almost everyone.
Glenn and his sister are enjoying the summer and our last few weeks here on the island. We are leaving July 7 to be stationed at Ft. Campbell, Kentucky. First the children and I are going to Germany to visit my family. My husband will set up house and spend the time with his family in Indiana.
I think the support group is really great. We're sorry we couldn't make this year's symposium. We'll be at the next one for sure.
Family Histories - Something wrong with Glenn
- Written by Daniela Hudson