Hi! I'm EJ Beauchamp, and I have a daughter that has isovaleric acidemia.
We live in Redding, CA. She is 10 years old. She was diagnosed at 21 months
when she went into a coma and went through toxic shock. She was never on
the formula, but I hear if they start on that, it's good. Michaela, my
daughter, takes glycine and carnitine. She stays on a low protein diet.
There are several others I've heard from, so good luck. My mother has been
a BIG help to me. Feel free to e-mail me anytime. Sincerely, Mike, EJ, and
Michaela Beauchamp.At 02:45 PM 10/17/99 -0000, you wrote:
>From: bettyj@...
>
>Hi! I joined this list in hopes of being able to talk with some people who
have
>a child or knows someone that has a child with Isovaleric Acidaemia.
>My grand son is 3wks old today and will be coming home from the hospital
>tomorrow. The geneticist met with the baby's parents yesterday to clue
them in
>on what is what. They will meet with their nutrionist Mon. morn. before
they
>are discharged. These parents are so young-the father is 22 and the
mother is
>just 17. I really haven't been able to find much info. except for the
facts that
>the baby will require a special milk formula for the rest of his life. He
will
>have lab works done once a week or every other week to monitor his levels.
>I'm under the impression that on the front end of this, things will be fairly
>simple-the reason being formula is all the baby needs for now. When he
starts
>needing solid foods is where things get???
>I've always been the type of person that I like to be as much prepared as
>possible. These parents are more laid back and have the attitude that things
>will take care of themselves or they'll handle a situation when it comes
about.
>Don't mis-understand me! There's nothing wrong with their way of
thinking-to a
>point. I want to know all I can so I'm able to recognize a situation
before it
>turns into a crisis. Can anyone help with info. or personal dealings with
this
>paticular disorder. BJ
>Betty- grandmother 42
>
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