Anyone Out there with MSUD?!
Question:
Anyone Out there with MSUD?
I have 2 children ages 1 and 5, who both have MSUD. I'd like to hear from some folks who have it or whose kids have it. Its so rare, its difficult to share stories and ideas. Thanks.
Additional Details5 days ago
BTW, i am very well versed in what the condition is, and how to take care of my kids. I just want to talk to someone who actually has it. Thanks.
Answers:
Treatment involves a protein-free diet. During a flare up, fluids, sugars, and fats are given by IV. Peritoneal dialysis or hemodialysis are used to reduce the level of amino acids.
A special diet free of branched-chain amino acids is started immediately.
Long term treatment requires a special diet. The diet includes a synthetic infant formula with low levels of the amino acids leucine, isoleucine, and valine. Persons with this condition must remain on this diet permanently. It is very important to always stick to this diet to prevent neurological damage. This requires frequent blood tests and close supervision by a registered dietitian and a physician, as well as parental cooperation.
Please see the web pages for more details on Maple syrup urine disease (MSUD)