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

Wed, 02/09/2005 - 01:21

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 THROUGHOUT THE YEARS I HAVE FOUND VARIOUS SITES BUT MOST OF THEM ARE OUTDATED.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 ellgee on Sun, 2005-01-16 - 09:55

Do you know which type of PME you son has?

I know that some "unconventional" treatment options have helped temporally (hyperbaric therapy), which is COMPLETELY undocumented for treating PME, but I know of folks who did get HBOT and thought it did help for a couple months. 

Talk of "gene therapy" has also entered the PME circles, unfortunatley, that is still a few years down the road.

I wish I could help you,  the "rarer" types of epilepsy just don't get the research or even the research funding to persue treatments. 

Good luck to you and your son.

 

Do you know which type of PME you son has?

I know that some "unconventional" treatment options have helped temporally (hyperbaric therapy), which is COMPLETELY undocumented for treating PME, but I know of folks who did get HBOT and thought it did help for a couple months. 

Talk of "gene therapy" has also entered the PME circles, unfortunatley, that is still a few years down the road.

I wish I could help you,  the "rarer" types of epilepsy just don't get the research or even the research funding to persue treatments. 

Good luck to you and your son.

 

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

Submitted by Linda1 on Fri, 2005-03-11 - 09:46

Good morning,

I am sorry to hear about your son.  Recently my son (15 yrs.) was diagnosed with JME.  I was not aware that this illness could "progress".......Could you please tell me more about his progression?.....symptoms, etc.  Is he having more seizures now than before? What does his Neurologist say is the "long term" prognoisis for your son?

I truly care and hope that you will write back.

 

Linda

Good morning,

I am sorry to hear about your son.  Recently my son (15 yrs.) was diagnosed with JME.  I was not aware that this illness could "progress".......Could you please tell me more about his progression?.....symptoms, etc.  Is he having more seizures now than before? What does his Neurologist say is the "long term" prognoisis for your son?

I truly care and hope that you will write back.

 

Linda

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

Submitted by aelisemc on Sun, 2005-03-20 - 21:05

HI LINDA,

THERE IS A DIFFERENCE BETWEEN JME AND PME, I DONT KNOW THAT MUCH ABOUT JME, BUT WITH ZACH'S PME HIS SEIZURES ARE FREQUENT AND THE MEDICATIONS DO NOT WORK VERY WELL (HE HAS BEEN ON SO MANY DIFFERENT MEDS THAT EITHER DIDNT WORK AT ALL OR ONLY FOR SHORT PERIODS OF TIME), HIS HAS MENTALLY GONE FROM BEING A NORMAL 12 YEAR OLD TO AT 17 BEING ABOUT 2-3 YEARS OLD, HE CAN NO LONGER WALK AND HIS SPEECH IS SEVERLY LIMITED.  IF YOU WOULD LIKE TO EMAIL ME DIRECTLY MY EMAIL ADDRESS IS AELISEMC@YAHOO.COM.  I WILL PRAY FOR YOUR FAMILY.

ANN

 

 

HI LINDA,

THERE IS A DIFFERENCE BETWEEN JME AND PME, I DONT KNOW THAT MUCH ABOUT JME, BUT WITH ZACH'S PME HIS SEIZURES ARE FREQUENT AND THE MEDICATIONS DO NOT WORK VERY WELL (HE HAS BEEN ON SO MANY DIFFERENT MEDS THAT EITHER DIDNT WORK AT ALL OR ONLY FOR SHORT PERIODS OF TIME), HIS HAS MENTALLY GONE FROM BEING A NORMAL 12 YEAR OLD TO AT 17 BEING ABOUT 2-3 YEARS OLD, HE CAN NO LONGER WALK AND HIS SPEECH IS SEVERLY LIMITED.  IF YOU WOULD LIKE TO EMAIL ME DIRECTLY MY EMAIL ADDRESS IS AELISEMC@YAHOO.COM.  I WILL PRAY FOR YOUR FAMILY.

ANN

 

 

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