- carnosine & diamox

[Guest guest]

Wow - I'm gonna have to look into carnosine. Congrats on the

success. BTW, we started on the diamox on Friday. By Sunday, I was

ready to give him away (behavior). This is typical for him when he is

too acidic. Funny thing is, I didn't notice much of the red ears & hands

this time, but the behavior issues were there. On Monday, we decreased

the dose to 1/2 tab (125mg tabs) twice a day. This took care of the

behavior issues. As far as seizure control, we'll wait and see (so far

so good). He has had a master of a cold with no seizures (good sign).

K

On Wed, 25 Feb 2004 19:53:39 -0400 mmc@... writes:

> KetoKidMom wrote:

>

> > Chez no longer sells the CarnAware in his office. You can only

> get

> > it through the website now. He said something about it being a

> > conflict of interest to continue selling it in his office.

>

> I tend to think its a conflict of interest - although thats not the

> accurate term to use - for him to make and sale an incredibly

> expensive

> formula for the very kids he is trying to help, just my

> opinion.......

>

> >

> > Did your nuero have success at replicating his study and results?

> > Just curious. I will look into the NOW brand.

>

> Well I am dying to share this with someone so here goes, just got a

> copy

> of neuro's letter today that he wrote to the gov't agency we are

> trying

> to get funding from. This has been a long hard struggle to get

> this

> far, initially got funding from July/03 to Nov/03, then convinced

> then

> to extend to end of Feb/04. Here are excerpts from neuro's letter:

> " As you know, has been receiving carnosine supplementation.

> There were two goals in providing the supplementation - improved

> seizure

> control and improved cognitive function. I approached the trial of

> Carnosine with a great deal of skepticism; however, I didn't feel

> any

> harm would come.

> has had seizures since Carnosine was started so clearly it

> has

> not stopped her epilepsy...To my suprise however there is quite

> good

> objective scientific data that she has made some cognitive gains

> (here

> he lists the results of psych testing). ...'s cognitive

> improvement also seems well documented by her speech and language

> pathologist who noted considerable improvement in her memory and

> comprehension and a greater ability to answer questions correctly

> and

> retell a story. Her family has also seen considerable gains in her

> learning abiltiy.

> Based on these careful assessments I have to begrudgingly admit that

> really has made some important gains since taking Carnosine.

> I

> would think it most reasonable for her to continue with the

> Carnosine...

>

> First I laughed and laughed, I have a good relationship with neuro

> (or

> at least think I do!) and found his " skepticism " and " suprise "

> amusing,

> but his " begrudgingly admit " comment was over the top. Then I

> thought

> about it some more and felt a little pissy, nothing like saying I

> totally pushed him into it......which I did. Then I decided that

> the

> way he wrote the letter might actually increase our chances of

> getting

> funding, so......

> We did not do the correct tests to replicate Chez' work though.

> First

> round of psych testing in August, they did expressive language and

> some

> other pieces of neuropsych testing. This month, they didn't even do

> expressive language testing.......really stiupid since I pointed out

> to

> them that Chez had found improvements in expressive language and

> autism

> traits. We did no autism testing (even though socially the school

> and us

> saw noticable improvements), because they paid no attention to that

> initially and then said whats the point, we have no baseline on

> autistic

> traits to compare to? Which is true, but we could have got a

> baseline

> before we upped dose in January. But they didn't, geuss it doesn't

> matter since he is recommending we continue anyway. Boy did that

> get

> long, sorry.....

>

>

> >

>

>

>