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UPDATED: Wed, 12/14/2005 - 2:42pm
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aelisemc
My 17 year old son has Progressive Myoclonic Epilepsy...
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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 THROUGHOUT THE YEARS I HAVE FOUND VARIOUS SITES BUT MOST OF THEM ARE OUTDATED.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.
By aelisemc at Tue, 02/08/2005 - 10:21pm | 1795 views | 31 comments
Topic: Families & Friends
Recent Comments on this Discussion
Hi Ann my name is Tara and my 15 year daughter has this and i was wondering if you had found any information on this disease? i am looking for the same thing. My daughter seems to be deteriorating quickly also. HOw is your son doing now? You can email me at jacks17@comcast.net
Mother to 28yr daughter with undx ?PME
Hello Tara, my daughter I believe has a severe form of PME seeing European geneticists next week to arrange complete DNA testing. There is another family in USA with daughter confirmed CSTB mutation for this condition. I will let her know of your post and she will contact you ASAP I'm sure - there are not many of us around so we would like you to keep in contact please. My email addy: shasimaus@hotmail.com look forward to hearing from you. Sharon
Yes it is really nice to be able to talk to people who's kids have this. Because they are th only ones who can really relate to what i am going through. i would love to share and here how other parents are doing. My direct email is jacks17@comcast.net
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 Kalli thank you so much for your reply, I have never had the opportunity to talk to someone else who has a child with PME. ALso, thank you for asking about Zachary. He continues to decline and he was hospitalized a week ago for pneumonia, he is home now and doing better, but he is "not out of the woods" yet. The PME is taking its toll on his body, but not his spirit. He loves everyone and we are grateful that our other children and their friends are so wonderful with him. Zach's hospital bed is in our living room, so he can see everyone that comes in the front door. How old was your son when he was diagnosed with PME? What is his current condition? Is he able to walk and talk? Zach needs help with everything that he does? Is your son like that also? I dont mean to ask such personal questions, but, like I said, I have never had the opportunity to talk to another parent going through this before. We also have a wonderful neurologist, as well as visiting nurses that come to our home 2 days a week. Without their support I am not sure what I would do. If you would like to you can you email me directly so that we can talk more? my email address is aelisemc@yahoo.com. I hope that your family is doing well, I know how hard things have been for our family. Hopefully I will talk to you soon. Take Care
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
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,
Al
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
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
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.
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
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