Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
My 17 year old son has Progressive Myoclonic Epilepsy...
Wed, 02/09/2005 - 01:21HI 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 THROUGHOUT THE YEARS I HAVE FOUND VARIOUS SITES BUT MOST OF THEM ARE OUTDATED.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.
RE: My 17 year old son has Progressive Myoclonic Epilepsy...
Submitted by tomdarling on Mon, 2005-05-09 - 08:49
Besides this site I have found crazymeds.org is very helpful. There are few parents, but a lot of twenty-somethings dealing with a host of brain issues, including epilepsy. Several are well versed in the medical journals, etc., and many are dealing with really, really difficult to control seizure issues and the like. It is a good resource.