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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 THROUGHOUT THE YEARS I HAVE FOUND VARIOUS SITES BUT MOST OF THEM ARE OUTDATED.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: RE: RE: My 17 year old son has Progressive Myoclonic Epileps
Submitted by aelisemc on Sun, 2005-03-20 - 21:21
HI AMY,
MY SON ZACH HAD THE SAME THING HAPPEN, HE WAS 6 WHEN HE BEGAN TO HAVE SEIZURES AND THEY TO WERE CONTROLLED WITH DEPAKENE, UNTIL HE WAS ABOUT 11 WHEN HIS SEIZURES STARTED TO BECOME MORE FREQUENT AND THE MEDS NO LONGER WORKED. I HAVENT FOUND A LOT OF INFORMATION ON LINE THAT WAS VERY HELPFUL. WHEN YOU DO LOOK FOR INFORMATION ON LINE, MAKE SURE THAT YOU ARE LOOKING AT INFORMATION THAT IS ABOUT PME AND NOT JME THERE IS A DIFFERENCE BETWEEN THE TWO. A LOT OF PEOPLE HAVE NOT HEARD OF PME AND MAY UNKNOWINGLY THINK THAT YOU ARE TALKING ABOUT JME. PLEASE LET ME KNOW HOW THINGS ARE GOING WITH YOUR SON. IF YOU WOULD LIKE TO EMAIL ME DIRECTLY MY EMAIL ADDRESS IS AELISEMC@YAHOO.COM. THIS IS THE FIRST WEB SITE IN FIVE YEARS THAT I WAS ABLE TO FIND WHERE I COULD TALK TO OTHER PARENTS WHO HAVE CHILDREN WITH PME, AND IT HAS BEEN GREAT HAVING SOMEONE THAT KNOWS WHAT I AM GOING THROUGH TO TALK TO.
ANN
HI AMY,
MY SON ZACH HAD THE SAME THING HAPPEN, HE WAS 6 WHEN HE BEGAN TO HAVE SEIZURES AND THEY TO WERE CONTROLLED WITH DEPAKENE, UNTIL HE WAS ABOUT 11 WHEN HIS SEIZURES STARTED TO BECOME MORE FREQUENT AND THE MEDS NO LONGER WORKED. I HAVENT FOUND A LOT OF INFORMATION ON LINE THAT WAS VERY HELPFUL. WHEN YOU DO LOOK FOR INFORMATION ON LINE, MAKE SURE THAT YOU ARE LOOKING AT INFORMATION THAT IS ABOUT PME AND NOT JME THERE IS A DIFFERENCE BETWEEN THE TWO. A LOT OF PEOPLE HAVE NOT HEARD OF PME AND MAY UNKNOWINGLY THINK THAT YOU ARE TALKING ABOUT JME. PLEASE LET ME KNOW HOW THINGS ARE GOING WITH YOUR SON. IF YOU WOULD LIKE TO EMAIL ME DIRECTLY MY EMAIL ADDRESS IS AELISEMC@YAHOO.COM. THIS IS THE FIRST WEB SITE IN FIVE YEARS THAT I WAS ABLE TO FIND WHERE I COULD TALK TO OTHER PARENTS WHO HAVE CHILDREN WITH PME, AND IT HAS BEEN GREAT HAVING SOMEONE THAT KNOWS WHAT I AM GOING THROUGH TO TALK TO.
ANN