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My 17 year old son has Progressive Myoclonic Epilepsy...

Wed, 02/09/2005 - 01:21

Topic: Family & Friends

HI MY NAME IS ANN AND I AM NEW TO THIS SITE. I AM LOOKING FOR ANYONE WHO HAS A CHILD WITH PROGRESSIVE MYOCLONIC EPILEPSY OR ANYONE THAT KNOWS OF A GOOD SITE WHERE I CAN GET INFORMATION ABOUT THIS DISEASE. MY 17 YEAR OLD SON ZACH WAS DIAGNOSED IN 2000 AND HIS CONDTION IS DETERIORATING RAPIDLY. THROUGHOUT THE YEARS I HAVE FOUND VARIOUS SITES BUT MOST OF THEM ARE OUTDATED. I AM LOOKING FOR SOMETHING THAT IS MORE CURRENT AS WELL AS INFORMATION THAT WOULD BE RELATIVELY EASY FOR MY OTHER CHILDREN TO READ AND UNDERSTAND. I WOULD REALLY APPRECIATE ANY HELP THAT YOU CAN GIVE ME.

Comments

RE: My 17 year old son has Progressive Myoclonic Epilepsy...

Submitted by apicken on Wed, 2005-01-19 - 08:58

My 15 year old son has Myoclonic Epilepsy. I'm curious what the symptoms are for the "Progressive" type. Also did the doctors diagnose your son's as progressive?

I just haven't heard that terminology used before in myoclonic epilepsy.

Sincererly,

My 15 year old son has Myoclonic Epilepsy. I'm curious what the symptoms are for the "Progressive" type. Also did the doctors diagnose your son's as progressive?

I just haven't heard that terminology used before in myoclonic epilepsy.

Sincererly,

RE: RE: My 17 year old son has Progressive Myoclonic Epilepsy...

Submitted by csalvaterra on Wed, 2005-05-18 - 08:35

Hi, my name is Cass, Im a clinical neurophysiology student(final year). I thought it would be helpful to tell you that there is a whole session on the epilepsy.com site concerning progressive myoclonic epilepsy worth reading.

Hope you find it helpful.

Regards

Cass

Hope you find it helpful.

Regards

Cass

RE: My 17 year old son has Progressive Myoclonic Epilepsy...

Submitted by jennamay on Wed, 2005-01-19 - 14:49

Below are a few links I hope you will find useful.

http://www.epilepsy.com/epilepsy/epilepsy_promyoclonic.html

http://professionals.epilepsy.com/newsfeed/pr_1098970209.html

http://www.epilepsy.com/epilepsy/epilepsy_websites.html

http://my.webmd.com/hw/epilepsy/nord781.asp

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=11918469

National Pediatric Myoclonus Center (they don't specialize in PME, but they do see patients with it)

SIU School of Medicine

Dept. of Pediatrics

PO Box 19658

Springfield, IL 62702-9658

USA

Tel: 2175457635

Fax: 2175455834

Email: oms@siumed.edu

Internet: http://www.omsusa.org