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

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

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

By brysmom on Wed, 08/02/2006 - 6:57am

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

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

By shasimaus on Thu, 08/03/2006 - 4:49am

Re: Re: Re: Re: My 17 year old son has Progressive Myoclonic Epi

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

By brysmom on Thu, 08/03/2006 - 5:38am

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

Hi: Ann,This is Umapathy Vadlamani from Hyderabad, Andhra Pradesh, India.My Son, Harihara Karthik Vadlamani--20 years Old--suffering from MERRF (Myoclonic Epilepsey with Ragged-Red fibres) from the past 5 and half years. Deteriorating progressively. Recently he was hospitalized for over 13 days. Gone down heavily--12 Kgs. weight reduced. Stopped his studies while he was in plus 2. All body muscles keep shaking--unable to walk & speak properly--Doctors say it is very unfortunate--I have also looked for various sites--looking for something new--hope cure will come for this dreaded disease.Let us regularly interact each other.Rgds,Umapathy VadlamaniFlat no.14, Anand Apartments,Ameerpet,Hyderabad-500 016Andhra PradeshIndiaE-mail--umapathy.vadlamani@gmail.com

By umapat... on Fri, 05/27/2005 - 3:50am

I JUST WANT TO LET ANYONE THAT MIGHT BE READING THIS MESSAGE KNOW THAT ON MAY 14TH MY SON ZACHARY PASSED AWAY DUE TO COMPLICATIONS FROM PROGRESSIVE MYOCLONIC EPILEPSY. WE MISS HIM TERRIBLY AND WILL SO FOR THE REST OF OUR LIVES.

By aelisemc on Tue, 05/24/2005 - 4:09pm

My is TomII Watkins. I have a seizure disorder since 4/78. I was the only baby to live through the proceser. I have Problems just any other since 1/05.

By tomii20 on Mon, 05/09/2005 - 7:27pm

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.

By tomdar... on Mon, 05/09/2005 - 4:49am

did you get my message about my son with pme are you in the states

By rockin... on Fri, 05/06/2005 - 11:27am

I just sent you an e-mail, but am not sure how I'll get a response as I'm computer illiterate, so I just found this. Please foirgive me if you get both. Your son sound like my 18 yr old son Travis. I was just wondering the difference between the two types of epilepsy - compare nots, as Travis gets worse all the time and keeps outgrowing meds!Thanks,Kim MooreWarsaw, Indiana

By travismom on Thu, 05/05/2005 - 6:09am

I have a support group that you might want to check out.http://health.groups.yahoo.com/group/EpilepsyApproach/Lisa

By angel_lts on Thu, 05/05/2005 - 2:56am

hi ann my son richard has pme thank god ihave found someone at last who has someone with this same rare condition! he is 28 years old and was diagnosed 5years ago

By rockin... on Wed, 05/04/2005 - 10:15am

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.

By jaka on Sat, 02/26/2005 - 1:36pm

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

hi jaka i am new to this site my son richard was diagnosed with pme the rare one 5 years ago he is 28 years old but it all started when he was 15 with a fit when he was watching tv it took me 5 years to get a true diagnosis with a host of things from schizophrenia being what i thought was the worse at the time please get in touch

By rockin... on Thu, 05/05/2005 - 12:08pm

My son has a form of PME called Unverricht-Lundborg disease. He started having grand mal seizures at age 6 but was fairly well controlled by Depakote. He would have occasional nocturnal seizures. Then about 20 months ago his meds seemed to stop working. It was very strange because he was not having any grand mals at all now. Instead he would look like lightning hit him. He would be jolted about 5 feet and land on his face. He would also have sudden jerks etc... So after trying every med available and having each one work great for a month or so and then stop helping, the doctor finally tested for U.L. which came up positive. I have been struggling to find info or studies we can participate in. I do not have a computer so your reply will go to my friend and she will get the message to me. So I apologize if my reply takes a bit. I would love to have any info, resources you might know about. Thanks, Amy

By serend... on Tue, 03/15/2005 - 5:04pm

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

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

By aelisemc on Sun, 03/20/2005 - 6:21pm

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

By aelisemc on Thu, 03/10/2005 - 6:02am

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

By jennamay on Wed, 01/19/2005 - 11:49am

Ann, I know of a guy that is 35 years old and had gran mal convulsions from the time he was 11 until age 15 that is when he went to Parkland Hospital in Dallas(epilepsy program),where after treatment the gran mals came under control with (DEPAKOTE)and that worked until he was 34 and his speech started sturtting,hands,arms,and legs would jerk sometimes his legs jerked so hard he would fall or almost fall.His epitoligist has him on Depakote,Topamax,Colonipin,and Lamictal(he also tried Keppra)Last January he fell because of his legs jerked and shattered his elbow.I have been also searching for more information on this subject myself to help him cope,but there is just really not much out there try Calling U.A.M.S. in Little Rock, Arkansas and they may be able to send more information,I heard they are supposed to have a Epilepsy Study Center there

By brianu on Tue, 02/08/2005 - 10:21pm

I think it's important to note - that not all myoclonic epilepsy is the PME type - JME isn't the PME type. Special tests are done to determine PME, I just don't want anyone assuming the non myoclonic epilepsies are the PME type.

By ellgee on Wed, 01/19/2005 - 6:10pm

Hi my daughter may have JME, she is photosensitive and has eye flicker plus occasional small jerks.NO tonic-clonics. Can you tell me please what tests your son had for PJME.If you dont mind telling me how ha syour sons symtoms progrssed in the four years.Regards Deborah

By deborah on Thu, 01/20/2005 - 5:59pm

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,

By apicken on Wed, 01/19/2005 - 5:58am

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

By csalva... on Wed, 05/18/2005 - 4:35am

Hi Ann, I have a 16 yr. old daughter who has Juvenile Myoclonic Epilepsy. I am not sure how Progressive Myoclonic Epilepsy is diagnosed or if the two are related. I do know that it was very difficult finding detailed information on JME. Most of the general Epilepsy books don't give you much detailed information on specific types of epilepsy. I did however, find a very specific book on Juvenile Myoclonic Epilepsy by searching the internet. The book is very in depth- more of a medical text for doctors- but i have managed to sort through most of it and have learned more. ( I first found the book on the web, then went to a Barnes and Nobles Book store and had them order it for me) It might be worth a try. You might also try to contact a local chapter of the epilepsy foundation. The office near my home has been most helpful. Good luck to you and your son.

By ktamos on Sun, 01/16/2005 - 5:39pm

ktamos, could you please email me the name of the book you were mentoining? Our 20 year old daughter was just diagnosed w/ JME and would like more info. thanks paulr@svcc.net

By paully on Wed, 01/26/2005 - 4:00pm

paully, sorry I didn't get back to you sooner. The name of the book is "Juvenile Myoclonic Epilepsy" The Janz Syndrome. The book is edited by Schmitz and Sander. If you want to e-mail me, our address is highlands@winbeam.com. I have a lot of information I could share that might be beneficial. My daughter's onset of JME started at age 15- she is 17 now. I have learned much in the past 2 years.

By ktamos on Mon, 05/23/2005 - 1:17pm

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

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

By kathy on Tue, 05/24/2005 - 4:48am

Hello, I have an 18 year old friend who was just recently diagnosed with Juvenile Myoclonic epilepsy. She isn't exactly sure what to do about it... She has never had anything this "Life changing" happen to her. She has been a really healthy person all her life and now she has this. Can you please tell me what to do about this.. I am sure she is WAY to lazy (;) ) a person to go to a place like this to figure it out. Thank you Very much

By sharati on Sat, 04/23/2005 - 11:44am

Many new uses are being found at a rapid rate for HBOT therapy. For instance, persistant wounds, which occurs freqently in diabetic's lower extremity and all type of skin lesions. I worked at The Wound Center in Kansas City, Missouri for a bit and we used these chambers frequently. A problem we had for people out of our area was locating a chamber.St. Joseph's Hospital in Kansas City Missouri has done some pioneering work and links with other labs working with various treatments for HBOT, plus locating these hard to find chambers. They might be worth giving a call for referral or information or trying to find their web site.

By gretchen on Tue, 01/18/2005 - 4:36pm

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.

By ellgee on Sun, 01/16/2005 - 6:55am

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

By linda1 on Fri, 03/11/2005 - 6:46am

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.

By aelisemc on Sun, 03/20/2005 - 6:05pm

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

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