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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 THROUGHOUT THE YEARS I HAVE FOUND VARIOUS SITES BUT MOST OF THEM ARE OUTDATED.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.
Comments
RE: RE: My 17 year old son has Progressive Myoclonic Epilepsy...
Submitted by aelisemc on Thu, 2005-03-10 - 09:02
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
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
RE: My 17 year old son has Progressive Myoclonic Epilepsy...
Submitted by jaka on Sat, 2005-02-26 - 16:36
Hi Ann.We are new to this site but "old" to the Progressive Myoclonic Epilepsy world. Your message is dated Feb 9, we hope you are still "checking in."We have a son with PME who turned 17 years old four years ago, meaning that he just turned 21 this month. He had his first tonic clonic (grand mal) seizure when 11. His particular type of PME is a never-before-diagnosed derivative of the PME1 (Unverrich-Lundborg). The myoclonics have become more aggressive, his alertness, coordination and energy continue to decline with time. Medications are added and increased.We have the same experience you mention that the web has a few outdated articles and nothing to grab onto. It seems most of the research is being done in Finland. Dr . Leheshjoke has apparently done most and is considered an authority. We contacted her a few years back and she basically supported the drug therapy our son is on and mentioned that selective and limited research continues. The NORD website has a good abstract on this disease, to the point.We find that the best support comes from the two doctors that attend to our son, both of whom are neurologists and experts in epilepsy. The therapy is almost a day-to-day variable with continuous observations and input from the Doctors. He is on a diet of five medications and the doses evolve up or down except for Depakote and Keppra, which increase steadily. There are good days and there are not-so-good days. We'd like to hear how your son is doing.