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To Louise re: Periactin

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Louise,

I do not know why Periactin/cyproheptadine is not used in England,

but I do know that Dr. Stanhope is aware of it. Are you going to

see him? He is at Great Ormond Street Hospital and spoke at last

summer's MAGIC Convention along with Dr. Harbison. They both have

the same philosophy regarding treatment of RSS, so that should be

comforting for those of you who can get to him.

I do think that when I spoke to him later that night (in the bar

where he was quite " happy " ), he mentioned something about it not

being approved for use in children in the US, especially as an

appetite stimulant. It can still be prescribed, though, and many

doctors have listened to us parents and written the prescription for

our RSS kids. It is not expensive, either.

The pharmacological world is funny, you know? In the US, we cannot

get Cisapride unless a child fits the criteria for " compassionate

clearance. " Go to Sweden, I believe, and you can get it without a

problem. I know it is available in Mexico and, I think, Canada.

Perhaps Dr. Stanhope knows of something else you could try. If you

are not seeing him this week, then try to make an appointment for

another time. He is a wonderful person.

Jodi

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