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Panel members: Singh, Buist, Trahms & Grasela

Q. Is it OK to freeze the MSUD formula after it is prepared?
A. Freezing the formula can break down the fat emulsion. It is not necessarily a good idea, but there is no chemical problem with freezing. Freezing will make the formula difficult to mix.

Q. How long will mixed, prepared formula last?
A. It is recommended that the prepared formula be treated like cow's milk. Bacteria formation is the biggest concern if it is not refrigerated. Within four to eight hours, bacterial growth can start.

Q. What are some high calorie, low-protein foods?
A. Baking mixes are the best. What is best is what the child will eat. The lower fat products are easier on the stomach.

Q. Is it OK to give persons with MSUD aspartame (Nutrasweet)?
A. Yes, only persons with PKU should avoid aspartame. Most persons with MSUD need calories and do not need this product.

Q. Why do computer programs vary on the protein content in various foods?
A. The database is old and needs to be updated.

Q. How often should you check DNPH and have blood work performed?
A. When there is a rapid growth period, DNPH and blood work must be done more frequently.

CHANGE THE LIVES OF MSUD ADULTS AND CHILDREN

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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