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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 THROUGHOUT THE YEARS I HAVE FOUND VARIOUS SITES BUT MOST OF THEM ARE OUTDATED.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: RE: RE: My 17 year old son has Progressive Myoclonic Epileps

Submitted by sharati on Sat, 2005-04-23 - 15:44
Hello, I have an 18 year old friend who was just recently diagnosed with Juvenile Myoclonic epilepsy. She isn't exactly sure what to do about it... She has never had anything this "Life changing" happen to her. She has been a really healthy person all her life and now she has this. Can you please tell me what to do about this.. I am sure she is WAY to lazy (;) ) a person to go to a place like this to figure it out. Thank you Very much

RE: RE: RE: My 17 year old son has Progressive Myoclonic Epileps

Submitted by ktamos on Mon, 2005-05-23 - 17:17
paully, sorry I didn't get back to you sooner. The name of the book is "Juvenile Myoclonic Epilepsy" The Janz Syndrome. The book is edited by Schmitz and Sander. If you want to e-mail me, our address is highlands@winbeam.com. I have a lot of information I could share that might be beneficial. My daughter's onset of JME started at age 15- she is 17 now. I have learned much in the past 2 years.

RE: RE: RE: RE: My 17 year old son has Progressive Myoclonic Epi

Submitted by Kathy on Tue, 2005-05-24 - 08:48

Hi

My name is Kathy and  my son Joseph 6 in the last 6 months has been dx with generlized clonic tonic,and  generlized myoclonic sz.I have read the post from this thread,lots of info,thank you,but the scarry part to me is if you go to each other home email I,as as a mother still searching will miss alot of information,please dont do that to me,as a very new searcher for someone like my son or even remotly close to his sz.From my heart.

Kathy momma to Joseph r22 and E

Hi

My name is Kathy and  my son Joseph 6 in the last 6 months has been dx with generlized clonic tonic,and  generlized myoclonic sz.I have read the post from this thread,lots of info,thank you,but the scarry part to me is if you go to each other home email I,as as a mother still searching will miss alot of information,please dont do that to me,as a very new searcher for someone like my son or even remotly close to his sz.From my heart.

Kathy momma to Joseph r22 and E

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