Re: Re: JANICE Lennox Gastaut

[Guest guest]

Hi

Thanks for your most wonderful support. I 'm so glad that is

doing well. I wish you all the best in the world.

Thanks so much for giving me your phone number and I certainly will diarise

it.

And yes, I would be MOST grateful if you could put me on the the LGS

talk-list. Thanks so much.

Love Janice

Re: JANICE Lennox Gastaut

> Dear Janice,

>

> Oh, your message just makes me want to cry-I feel for you. I really do.

If

> you need to talk, you can call me anytime . I am thinking

that

> you may not know that there is a LGS group at Yahoo groups. It is a great

> group of support for families with LGS ranging in age and severity. I

find

> it to be very helpful but also depressing at times b/c there are moms and

> dads on the site with older kids and they are not doing very well. But,

> there are also moms on the site w/young kids doing the keto diet.

>

> The basic idea that I gather from reading about LGS is that it is a

> progressive form of epilepsy that causes mental retardation and

eventually,

> many seizure types that are uncontrollable. is one of the

milder

> kids on the list. He was diagnosed with LGS from an EEG (it is an EEG

> diagnoses) and it has to do with the spike and wave pattern and abnormal

> background slowing. If you have the Freeman book about Epilepsy in

> Childhood, it show what an EEG for LGS looks like. hasn't had

> the LGS pattern since May, 1999. His EEGs have improved tremendously.

>

> Janice, you need to find a neuro that wants to fight it. Don't let them

just

> tell you a grim diagnoses with no hope. We were so devastated that I just

> waited every day for to regress and to start having more

> seizures-it hasn't happened yet. We have to drive 4 hours to see a neuro

but

> its worth it for us.

>

> Please feel free to email me personally or call-

> HUGS

>

>

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a professional

keto team!

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