Re: searching for a new keto team--

[Guest guest]

Hey Neighbor!!

We're just south of you--between Tionesta and Clarion!! When the seizure

nightmare began, I took my daughter to CHP and, although I believe they

had her best interests at heart, she took a downward spiral to the point

of having daily seizures and no quality of life. Of course they would

not agree with me that the drugs were making things worse, but I started

Claire on the diet there in July '03 and weaned the drugs myself (and

long, nasty process). When the withdrawals took a really bad turn, I

took her to Philadelphia and we've been going there since (and she's

doing great--hopefully to be confirmed by a sleep eeg next week).

I've good things about Cleveland, too (again not specifically the diet,

though), but anticipated a hassle regarding insurance and knew that CHoP

really believes in the diet--so there we are. If you find out anything

about the Cleveland diet team, I'd love to hear.

~Barbara

p.s. How is Colton doing on the diet?

hemlockridgePA@... wrote:

> Hi ,

> we are practically neighbors.... we live up in Erie county, PA.....

> We, too,

> went to Children's Hospital of Pittsburgh..... and we too felt our

> " team " was

> basically lacking, for want of better words....

>

> Although we tried to get into Hopkins, we have been unsuccessful in

> making

> the switch. They told us that they don't take people who started

> elsewhere....

> bummer....

>

> I don't know for certain, but we've heard some good things about

> Cleveland.... at least their epilepsy team, not specifically the

> ketogenic diet

> aspect..... but you may want to look into this.... We, too, are

> thinking we may

> investigate this option further..... Also, any info on the Columbus

> area?

>

> Just thinking... good luck, and keep us posted.

> , Colton's mom.... on diet since June, 2004

>

>

>

> " 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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