Anyone Out here next to MSUD?

I have 2 children ages 1 and 5, who both enjoy MSUD. I'd like to hear from some folks who own it or whose kids have it. Its so undercooked, its difficult to share stories and ideas. Thanks.Anyone Out here next to MSUD?
Treatment involves a protein-free diet. During a flare up, fluids, sugars, and fat are given by IV. Peritoneal dialysis or hemodialysis are used to reduce the stratum of amino acids.
A special diet free of branched-chain amino acids is started immediately.
Long occupancy treatment requires a special diet. The diet includes a synthetic infant formula with low level of the amino acids leucine, isoleucine, and valine. Persons with this condition must remain on this diet forever. It is very key to always stick to this diet to prevent neurological injury. This requires frequent blood tests and close supervision by a registered dietitian and a physician, as capably as parental cooperation.
Please see the web page for more details on Maple syrup urine disease (MSUD)
This is a very undercooked disease and I am sorry that your children have it. I enjoy found web sites that own stories about other children and grown up that enjoy this.
http://www.msudresearchfoundation.org/ms...
http://www.pediatrix.com/body_screening.
Chat rooms for MSUD
http://www.angelfire.com/nc2/court1/rule...