Re: Fatty acid testing -- from Winston

[Guest guest]

, Sorry to hear that about your son, I know that you must

have been approached about surgery, as we have been, my son has

a Chiari-I malformation.

You have brought up a very good point. Our children can have structural

abnormalities that can go unidentified and while we are running down

a 'primrose path' the problem is actually structural such as Landau

Kleffner or Chiari. Alot of children are never fully evaluated for the

possibilities causing their lack of speech. We get shuffled around and

depending on our insurance coverage or the town we live in or who

the pediatrician is friendly with get referred to a doctor who might

figure out what is wrong. Of course if they do figure out what is wrong

they want to drug our kids or do brain surgery. This has always been

hard for me. I just couldn't do that to Forrest. What if I didn't get

him back? And then I think about all the abstracts I have read over the

years that say that the brain is plastic. That you can change the

architecture of the brain. Dr. Chez must work on that assumption

because he suggests drugs like Depakote and steroids to help

kids with Laudau Kleffner. The funny thing is that Depakote is a

fatty acid (valproic acid) and steroids suppress the enzyme

phospholipase A2 which prevents the cutting off of essential fats

from the cell membrane. Now he is using Carnosine which also

changes fatty acid metabolism. I think Dr. Chez is very interested

in fatty acid metabolism because whether he realizes it or not,

that is what he is affecting by the drugs and nutrients he is

suggesting. Best, Carlton

[Guest guest]

Dear ,

I think you are correct about Dr. Chez changing the fatty acid metabolism.

My daughter's geneticsit has said that she thinks the problem is metabolic.

I'm a bit worried about just haphazardly administering the fatty acid and

amino acids. I would like to come up with a mix that is specific for my

daughter. I think it is the best approach, actually it's the only thing that

we can do proactively to help with her GDD other than therapy. Did anyone

ever post the phone number for Dr. Chez, I would like to have him consult

with my daughter's doctors. We had Kennedy Kreiger do the lipid panel, I

wonder if that is Ann Moser? Is she related to Dr. Hugo Moser? Can I email

you direct ?

Deirdre

Re: [ ] Fatty acid testing -- from

Winston

> , Sorry to hear that about your son, I know that you must

> have been approached about surgery, as we have been, my son has

> a Chiari-I malformation.

> You have brought up a very good point. Our children can have structural

> abnormalities that can go unidentified and while we are running down

> a 'primrose path' the problem is actually structural such as Landau

> Kleffner or Chiari. Alot of children are never fully evaluated for the

> possibilities causing their lack of speech. We get shuffled around and

> depending on our insurance coverage or the town we live in or who

> the pediatrician is friendly with get referred to a doctor who might

> figure out what is wrong. Of course if they do figure out what is wrong

> they want to drug our kids or do brain surgery. This has always been

> hard for me. I just couldn't do that to Forrest. What if I didn't get

> him back? And then I think about all the abstracts I have read over the

> years that say that the brain is plastic. That you can change the

> architecture of the brain. Dr. Chez must work on that assumption

> because he suggests drugs like Depakote and steroids to help

> kids with Laudau Kleffner. The funny thing is that Depakote is a

> fatty acid (valproic acid) and steroids suppress the enzyme

> phospholipase A2 which prevents the cutting off of essential fats

> from the cell membrane. Now he is using Carnosine which also

> changes fatty acid metabolism. I think Dr. Chez is very interested

> in fatty acid metabolism because whether he realizes it or not,

> that is what he is affecting by the drugs and nutrients he is

> suggesting. Best, Carlton

>

>

>

>