This workshop was part of the Association for Neuro-Metabolic Disorders (ANMD) Parent Conference held in Ann Arbor, MI.
Dave and I and our two boys attended our first ANMD meeting Saturday, April 16, 1994. We met first with four other MSUD families and dietitian, Julie Jacobson. As always, exchanging ideas, sharing feelings, and getting to know each other better was so special.
We discussed several different topics including school issues, illness, and dietary information. We agreed it is so important that teachers are aware of our children's special dietary needs and signs and symptoms of increased levels. Unfortunately, some teachers are less receptive than others, and it's important to seek out one that will work well with you and your child.
I shared my occasional feelings of powerlessness over MSUD, especially after my son Jordan's recent illness and hospital stay. We discussed how stressful it can be when our children are ill, yet how important it is to maintain control over our feelings for the child's sake. Like other children, MSUD kids seem to catch a variety of illnesses from ages 2-5. Joyce Brubacher emphasized that frequent testing of urine DNPH, along with antibiotics at the onset of unusual symptoms, helped to minimize episodes of increased leucine levels for her children. She also shared that it's easier to reason with older MSUD children about the importance of formula, fluids, and calories during time of illness. Sandy Kiel recently learned that the chicken pox vaccine should be available this Summer.
We were excited to learn that Ross Labs has a new MSUD Food List, which Julie will send to each of us. (One M & M candy has only 5 mg of leucine. Yeah!) We discussed "sneaking" foods and agreed that for some younger children it may be beneficial to keep "no" foods out of reach. Also, if children test their parents by sneaking "no" foods, a matter-of-fact response might be appropriate. We really enjoyed the fellowship that we shared with the other MSUD families and look forward to our next gathering.
Sharing - MSUD Workshop
- Written by Sandy Bulcher