Betty-
God Bless your grandchild as you start this journey. When my daughter was
diagnosed
with a rare metabolic disorder, I did quite a bit of research. Some of my
sources
included: her doctor, a pediatric endocrinologist, the company that makes the
formula probably has some educational material related to the disorder. This
can be
quite helpful. The internet - for all sorts of research and support. Be careful
about overloading yourselves too soon with information. A lot of the textbook
material is old and based on worst scenario cases when the cases had barely been
identified or the patients very sick due to inability to diagnose the problem in
years past. As far as special diets, this support group is an excellent source
for
others on restricted diets and you should speak to the dietician working with
your
family for other sources. Good luck to you and your family. Therese - mom of
Kelly, homocystinuria - age 10
bettyj@... 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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