Dear Crystal -

My name is Kim and I have a 6 1/2 year-old son with Isovaleric Acidemia
(IVA). I know that your son has MSUD but if you want to talk to someone who
has experience in general with metabolic disorders I would be happy to email.
I think that IVA and MSUD have some similarities (both are disorders where
leucine cannot be properly metabolized, I think. I know this is the case
with IVA and thought that MSUD might have this component).

Since our son, Dylan, is almost 7 we are out of the baby time that you are
going through but I remember it well: the fears, the worries about his diet,
the worries about him getting sick again, concern about development ... It
was a very scary time and full of uncertainty.

I also thought that I would tell you about a resource that might be helpful.
I know that near where we live in Philadelphia there are a number of children
with MSUD in outlying counties. I think that a lot of them are treated at
the Clinic for Special Children in Lancaster County (I think that is the name
of the clinic, anyway). If you want me to find out I can look through some
of my stuff. They may have parents of children with MSUD who would be
helpful to talk to.

Please write back if you want someone to chat with who has experience with
managing the diet, the formula, etc. Best of luck!

Kim (email: Kimandluke@...)