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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Hi, Betty,
It's a good thing you found your way here, you'll find an easier
time being able to use us as a sounding board or for advice. I know
I've certainly found comfort here. My daughter has Propionic acidemia,
and all of these diseases are similar, like cousins. I can't give you
any specific advice, but in general the baby's wellness will depend on
a few things... First, the parents' attitude that all will work out is
perfect. If they can learn to take it all in stride they will be alot
better off, and then the baby will be better off by extension. I know
this from experience because that is the exact attitude I carry, while
my husband worries about EVERYTHING and it drives me crazy. There are
professionals all around you to help this baby, so let them. Worry only
brings on stress and that turns ugly in long term situations. I'm not
saying never worry, but it's not necessary to worry constantly. Another
important thing is how much the parents show the baby that it's loved.
We are constantly showing our daughter how much support she has and have
never once felt like she is a burden in any way. That makes a big
difference, she doesn't feel different than anyone else because of her
disease and she knows without a doubt she is loved no matter what. We
even have a boy that is not affected with the disease and she feels no
rivalry with him because to us they are no different. It's good that
the parents are young too, perhaps if they are mature enough to stick
it out together, then their resilience and energy will be invaluable.
They told me in the beginning that my daughter would never eat
meat of any kind, but only have fruits and vegetables incorporated into
her diet. I took the liberty of learning her diet and allowances and
I handle her diet all by myself, with only 6 month check ups by her
dietician, just to make sure all is well nutritionally. She flourishes
today, and is smart as a tack. She also gets meat in her diet 2 out of
four feedings a day. The very most important thing for everyone in
your situation is to learn the child's composition, though. Each child
is unique and once you establish your child's normal pattern then life
becomes easier. If you know what it looks like just as they become ill
then you can get help faster, etc. We very quickly got a handle on
my daughter's tolerances and it helps alot. I don't know what else to
tell you, anything more specific wouldn't help with the type of acidemia
your grandchild has. But good luck, and hang in there. It'll all be
worth it and then some.
Leslie Pierce
Mom to Cadence Journey, 3, Propionic Acidemia and DJ 6 months,
unaffected.