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