PKS Kids
Education~Awareness~Support for those affected by Pallister-Killian Syndrome
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Seizure Study being done
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This is exciting news for PKS Kids and the families! Please visit this link for the survey and more information:
http://www.pkskids.net/medicalinfoandresearch.htm
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2 Comments
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Gretchen
11:08 AM on July 27, 2009
Hi Kerry! Simon is on Keppra, Topamax and Lamictal. When we added the Keppra to the mix, the myoclonic jerks stopped. Finally! Although he still has other seizures. I have not seen any bad side effects from it either. No lethargy.
I would love it if you'd join www.pkskids.ning.com where we do a lot of sharing of questions and concerns and you will get more feedback to this question! It's a great network site. It's awesome she is self-feeding. Si will be 5 in Dec and still has no clue
I would love it if you'd join www.pkskids.ning.com where we do a lot of sharing of questions and concerns and you will get more feedback to this question! It's a great network site. It's awesome she is self-feeding. Si will be 5 in Dec and still has no clue
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kerry flanagan
09:25 AM on July 27, 2009
My daughter, Una will be 4 in november. About a year ago, she started having myotonic seizure activity. It was only about once a onth and she did not seem to mind. Recently she has been having them almost once per day and she is very unhappy frightened during them. We have been strongly considering a medication called Keppra, recommended by a nuerologist. Does anyone have any comments they could share? We have not wanted to medicate because she is lethargic and difficult to motivate as it is. She is non-communicative (aside from body language). She recently started self feeding (she eats orally) and she is non-ambulatory. I would love to hear anything anyone has to offer.
Thank you
kerry flanagan
Thank you
kerry flanagan
