Sandy Bulcher shares how their family has handled Jordan's diet at school. These good, useful ideas, are helping her son to become independent. The article is reprinted from the newsletter of the Association for Neuro-Metabolic Disorders (Vol. 17, No. 3, Dec. 1997). The newsletter is affiliated with the Pediatric Neurology Metabolic Clinic at the University of Michigan Medical Center.

I'm sure that we are no different than most parents. After being told that our son needed to follow a specific diet, we wondered: How is he going to follow a diet at school? What about parties at school? Will he make appropriate choices when we are not around? Should we send formula to school?

Jordan is in the 2nd grade now. We've had a few years to figure out how to manage his diet at school. Fortunately, the school staff has been very cooperative and eager to learn about his MSUD diet. In the evening, we review the next day's lunch menu. Jordan decides if there are enough low protein food choices to satisfy his appetite. If not, I pack his lunch.

Jordan's favorite packed-lunch is a butter sandwich, chips, dill pickle, and a fruit rollup. His favorite school lunch is spaghetti (no sauce), garlic bread, salad, and applesauce. His leucine tolerance is 1000 mg/day. He brings a notebook to the cafeteria each day and the lunch aide records the kind and amount of food he eats. I decide what to give him for dinner based on the amount of leucine that he had at lunch.

Recently, the aide was absent, so Jordan himself recorded what he had eaten. When he came home from school, he announced that it was "easy" to keep track of his diet and that he would be recording it from now on. Needless to say, we are thrilled that he is being so responsible. Incidentally, I went to school during lunch time many times his first year, so that I could see what size portions were being served to determine the amount of leucine.

At the beginning of the school year, Jordan and I went shopping for his favorite "zero protein" foods to be used during parties. He chose fruit rollups, Mike and Ike candies, and low protein wafers. When one of the students brings in a birthday treat, his teacher gives Jordan a choice of one of his snacks and sends the birthday treat home in his lunch box for me to decide if it's appropriate. This has worked well and he doesn't mind not having the same snack as the other children. And I know that he is not getting any more leucine [at school] than what he had at lunch.

Jordan really likes the breadsticks they occasionally serve at lunch. In his notebook recently, it was recorded that he only ate half of the breadstick. When I asked if he wasn't as hungry at lunch, he replied, "The breadsticks were different today, a lot bigger, so I only ate half of it so I would not get too much protein." It was refreshing to hear that he had thought this through and made a good choice. Clearly he is becoming more independent.

Figuring out how to handle his formula at school has been more challenging than his diet. Jordan does not want to drink his formula in front of anyone other than us at home. Along with his teacher, we worked out a system. He brings his "special drink" to school in a thermos in a small cooler. When he gets to school, he puts the cooler in a conference room next to his classroom. (He doesn't even want it in the same room.) He drinks juice at lunch time and drinks his formula when he comes in from recess. He said that he slips into the conference room while the other children are getting settled in and nobody sees him drink his formula. He's been happy with this arrangement.

Overall, it has been easier to manage Jordan's diet and formula at school than we expected. It is critical, however, to have a teacher who is flexible and supportive. Jordan is doing well in school and the majority of the time having MSUD is not an issue for him.

The temptation we all must check as parents is the urge to overprotect. There is a fine line between mothering and smothering and fathering and bothering.


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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