My daughter Hannah Dolins is 11 years old and has Classic MSUD. This year she began Middle School. When she was younger, she was hospitalized due to infections that raised her leucine levels once or twice a year. Treated with IVs including BCAA-free amino acid solutions, she always recovered well. She has not been hospitalized for almost 2 years now. She followed the growth curve at about the 50th percentile for weight and 25th percentile for height. In the past couple of years her rate of growth increased, and she is now at the 50th percentile for both height and weight.
With the pre-teen years has come an impulse to experiment. From time to time she asks for foods that she knows she can not have. She says she wants "just a taste," but we worry that she would try to test her limits by having more. We try to explain to her that she’s better off not tasting these foods.
Hannah does not have a large appetite. Perhaps this is why we have not found it necessary to use special low protein products. She eats a small frozen waffle for breakfast. Lunch is often 20 grams of whole wheat bread, and for dinner she will have a little rice, pasta or potato. Fruits and vegetables are added to this. She currently has an allotment of 550 mg leucine, which she gets from these foods. She has a small scale which she can carry with her to school and to restaurants.
Hannah loves to read. She taught herself to read before kindergarten. As she has gotten older and schoolwork has become more complex, she has had more difficulties. Her biggest challenge, and the area in which she needs the most help, is remaining organized. Her locker needs to be cleaned out regularly. I often receive papers long after I should have.
Hannah has participated in team sports including softball, basketball, and soccer. While she enjoys these sports, she took the last year off and now has been taking horseback riding lessons. She also enjoys theater, and has spent the last 2 summers in a theater program at a local college. Hannah dreams of being able to go to sleep-away camp like her brother and sister. At this point, we don’t see how this would be possible.
She is a member of the MSUD kids email group, and would love to hear from other MSUD kids.
Living Well With MSUD - Hannah Dolins
- Written by Karen Dolins
- Category: Volume 23-1