Thank you for your email - it helped alot

[Guest guest]

Hi

i just wanted to thank you for sharing your info with me. You mentioned the ACTH

treatment.... we saw the neuro team 3 weeks ago and I mentioned it to the lead

neuro doc and she agreed to give it a go, as she has worked in USA she knew all

about it and has arranged to try Siera on it starting next week. I'm not going

to get my hopes up but if it helps at all I will be very happy.

How is Ella doing?

Cheers

Kat

________________________________

To: " polymicrogyria " <polymicrogyria >

Sent: Tue, 17 May, 2011 6:45:10 AM

Subject: Re: New to Board

Our daughter Ella had infantile spasms too caused by PMG. She is 2 1/2 years old

now, and she has been spasms-free since 6 months of age after a course of ACTH.

What medications is your daughter taking?

Ella went a long time without any seizures at all, but in March, she started

having some complex partial seizures a few times a month that we

are still trying to get under control.

She goes to a full-time day treatment clinic that provides therapy on site. She

graduated from PT, but is still in OT & speech. She has an increasing

vocabulary, and her swallowing & self-help skills are improving all the time.

She is social, charming, smart, and a handful . We are proud of her progress

and hope she continues to beat the odds.

Feel free to email me if you have any questions, Kat.

Sincerely,

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