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Okay, I'll share...in 1994 we pressed neuro into helping us start Hannah on

the Ketogenic Diet, said we'd do it with or without him. If we went to a

center we would have to wait 6 weeks minimum, but he said he knew all about

keto diet, so we did it locally, even though he said it would be the worst

experience of our lives. It was a Godsend, but we quickly learned he didn't

know what he claimed he did and the dietitian knew even less so we networked

with parents and found someone who would teach us how to calculate and that

parents FedEx'd tons of pages (before Freeman's book came out) and we ended

up teaching our neuro. But that's not the lie I was referring to. We trained

him, I copied and gave in all the latest info, my mom became a Keto coach

and got specific training. People were calling from all over the country.

One day we got a call from someone who;s child was seeing this same neuro

and they very much wanted to try the diet on their child but neuro told them

that child wasn't sick enough, that the only people who do the diet are

those confined to wheelchairs, on multiple drugs, and basically

non-functioning. This was an outright lie to a desperate parent and I lost

all respect for him. We are back there now because we've been away for a few

years, I've seen lots of neuros and can see through the crap. Seems like

most of them (that we've seen) are very similar to this local one. We had a

really terrific neuro in Dallas, but sadly, he's closed his practice and

left the state. Besides that, I want to wean her drug, or at least reduce

the dose and don't necessarily want to consult with neuro, so this one is

perfect because he doesn't even want to do blood levels and gave us a 6

month prescription. It took me a really long time before I was willing to

sit down and watch Lorenzo's Oil, but I agree, its a very good film as well

as First Do No Harm. Ellen

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Sigh...I guess that is my basic question too....what is the problem here? If

it works, why the resistance? This is crazy that we even have to have this

listserv, because this should be a standard and accepted therapy option! I'm

personally about sick of the bureaucracy!

Dr. Cheryl Bruce, MD

The Center

For Exceptional Children and Families, Inc.

" Where growth begins! "

P.O. Box 732

Belmont, CA 94002-0732

http://www.gregorycenter.org

cheryl@...

1-650-591-1181

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I find this position very interesting and am totally perplexed by it. If you

do not feel that HBOT is acting on the brain in CP, which is where the

problem lies, what system do you propose that the HBOT is acting on,

certainly not the muscular system, as that would not account for reduction in

spasticity or flaccidity, and not the neurons responsible for the reflex

spasticity and flaccidity, because that wouldn't account for the improved

muscular control. What system are we talking about here?

Dr. Cheryl Bruce, MD

The Center

For Exceptional Children and Families, Inc.

" Where growth begins! "

P.O. Box 732

Belmont, CA 94002-0732

http://www.gregorycenter.org

cheryl@...

1-650-591-1181

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  • 4 months later...

Hi,

I know I don't post a hell of alot. I am usually a lurker. Hello

everyone!!!!! I am on 20mg of Lex. I still get vivid dreams. Most are

pleasant, and some just down right bizzare. Like, a never ending story.

Only a few times did I have what I call night terrors. I get these

periodically.(don't think it is a side of Lex, I have always gotten them). I

usually get these dreams(all) a total of 10-15 a month. Before Lex I would

have vivid dreams and not remember them. You know what I mean? Now I am

in the habit of writing them down and take with me to my p-doc......

Jacquie

Matt

I still get vivid dreams but not as often.

Jaw clenching seems to be a side effects for some of us but not

all .We have a database that you can have a look at and add yourself

to it if you like.

Welcome to the group Matt.

Hugs all

Lesli

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  • 1 year later...

Thanks guys. With all the garbage going on in Ottawa at the moment, I was a bit

worried.

Matt will know what I mean.

Hope your holiday was a good one Matt.

+Dave

Re: Matt

> Well, I'm probably telling on him but he resubscribed about a week ago. He's

> probably resting up from his vacation. :-)

>

> Rick Hahn

> rick@...

> http://www.risg.org

>

>

> > Hey all, has anyone heard from Matt????

> > +Dave

>

>

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Hi Dave, I'm okay, I had a great vacation and am catching up on things. The

Caribbean is a great place. I understand now why people move there. When I

got back I got strep throat and pink eye. However, I do have a funny story.

The day I left Tampa, Bush was flying in for President's Day. Security

was really tight. They x-rayed my shoes (I am not kidding), my coat and my

wallet. They made me open the locks on my suitcases, searched them by hand,

then x-rayed the bags. By the time I got everything all back together, they

stopped me again. I was wearing a straw hat, it was the only thing that hadn't

been searched. So they made me take off my hat to make sure there was nothing

underneath there except brains. The hat is loosely woven and that you can see

right through it. Anyway, the security people decided that they had to xray

my straw hat. Unfortunately they found that it had " gasp " a wire around the

brim. After talking back and forth on walkey-talkeys, they decided my hat was

not in fact a deadly weapon and a potential menace to the President and I was

allowed to board the plane. Matt

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Hi Matt,

'Glad to hear that you've had a good vacation in the Sun.

The thought of having my shoes (and cap) X-rayed is funny, but I guess that

Security has been stepped up since " the shoe bomber " tried his stuff over

the Atlantic.....So it's nice to know that they taking things a bit more

seriously at Airports.

At least they got you back in one piece, so I guess that it was worth the

hassle.

Take it easy now and enjoy the cooler weather. (LOL......That's the worst of

coming back home, eh!)

Anyway, take it easy now and best regards!

Mal.

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  • 4 years later...

Matt: I am so sorry about the loss of your father. He was a man of many

talents and lived a full life. It's so unfortunate that he fell ill on a

trip that should have only brought pleasure to him and his family. My

deepest sympathy is with you and your family.

Margot

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