To Amy re: encephalopathy

[Guest guest]

Hi Amy,

I'm excited to see another " encephalopathy " mom here. I was just exchanging

e-mail with another one the other day. You two are the first I've found.

From what I've been able to find on the internet, encephalopathy is a

generic term for " brain disorder " . I've heard that our ped neuro uses it a

lot - one of his favorites. Just my personal opinion, I think it's a bit

more normal that PDD or Asperger's, so not officially on the spectrum, but

it's also not quite normal. I think it's the " nerd " stage. My son is still

getting speech and we just FINALLY found an OT who sees a need for sensory

motor integration for his fine motor skills. He still has mild hypotonia and

is not quite as coordinated as his peers; but he played on a T-ball team

last spring and enjoyed it, even though he wasn't good, I was SO PROUD. I

know the other parents were proud, but I was REALLY PROUD of his recovery.

It's kind of a tough dx because I think this is where they fall through the

cracks - not bad enough for services, but not quite up to the peers either.

We just keep trying, we're almost there.

I've seen a lot in the internet about encephalopathy caused by fetal alcohol

syndrome too.

I believe that my son's is due to a genetic inability to digest

gluten/casein. He is improving much faster while on the diet. When we went

to the ped neuro the first time, he told me from looking at my son's history

that he thought he would have to call this PDD. But after the ped neuro

talked with my son, the ped neuro said it's not PDD or Asperger's because he

enjoys having a conversation.

I understand your frustration at this dx. It is almost a disappointment

because you finally think you know what this is - but it's not, but then

your thankful too that it's not.

Anyway, glad to hear from you.

, I have a sister with schizophrenia

Blake's mom, encephalopathy, 5.10

's mom, skinny, not celiac, but gaining on the diet, 2.9