1. Find a hospital treating metabolic disorders close to where you will be staying in case of an emergency. If your child is an infant, look for a pediatrics department.
  2. Call the hospital ahead of time to introduce yourselves and the patient (doctors appreciate this gesture). Keep the names and phone numbers of doctors handy during the trip
  3. Carry a detailed "emergency letter" from your own Metabolic Clinic and a copy of the letter translated into the language spoken in the country of your destination.
  4. Do not send MSUD formula by mail to your destination without first checking on mailing fees, the length of time it takes to get there, and the cost of custom taxes and inspections This can be very expensive.
  5. Carry with you enough formula, mixed and ready to use, for the days you will be traveling. The formula and the supplements should be in a cooler with ice packs, and your name and address must be on the cooler. The cooler should be no bigger than the size allowed for a carry-on, otherwise it may be put in a difficult place to reach in the cabin of the plane.
  6. Be prepared in case of delays at airports. Carry with you at least a few cans of formula and enough of everything needed to make additional formula. Include some low protein snack foods.
  7. Ask your doctor to write a prescription for the MSUD formula and tape it on top of the cans in your carry-on bags.
  8. Have your metabolic clinic write a "traveling letter." It should explain your child's MSUD condition and emphasize the importance of the formula for your child's diet. It should include a list of the supplements and other items needed for the care of your child, such as, blender, scales, DNPH, etc. Keep this letter with you during the trip.
  9. Take some low protein products with you. This will depend on how much solid food your child eats, the length of your trip, duration of your trip, etc.
  10. For a long stay, you might want to do some research on companies from which you can buy low protein products while there. Many of these companies have web sites you can check out before departing. You can keep these addresses, phone numbers or fax numbers with you. Loprofin products can be ordered in numerous European countries.
  11. Find a list of leucine values for the foods eaten in the country you are traveling to, or make your own list. Adapt some of the countries recipes for the MSUD diet.

Enjoy your trip!


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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