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new here
Sat, 07/10/2004 - 08:23Topic: Family & Friends
hi everyone,i'm new here, i have alittle boy 5 yrs old with seizures and have had then since he was 9 months old. We have tired more meds then i would have like to think about and we have had no success. They seem to work for a while and then stop working. We have tired several combinations but again nothing is controlling them. My son has these seizures because of a chromosome disorder called isodicentric 15, this disorder has disabled him completly. Will has myoclonic seizures and worst time seems to be early early morning 3 am until 7 am. I was wondering what meds or alternaive medicine people have had luck with?thanks for listeninglori
Comments
RE: new here
Submitted by princessmarmo on Fri, 2004-07-09 - 16:40
Lori, My son Blake who is now 10 started having seziures when he was 7 mths old and they never really seemed to stop no matter how many medications the doctors put him on.. Today he takes topamax, tegretol & clonopin.. He too has most of his seziures in the early morning hours when he is alseep.. He recently had an operation after the doctors decided that it was time to get more aggressive since all the medication seemed to be doing was making him drowsey as oppsed to stopping his seziures like they were supposed to be doing. Anyways in Dec of 03 he had the vagus nerve stimulator put in, which is pretty similar to a pace maker for your nerves in the neck.. It seems to be doing the trick though.. when he has a seziure I run a magnet over the plate he now has in his chest under his arm pit and it stops the sezuire immediately.. The plate is attached to the nerves in his neck... It seems to be doing the trick and Blake is now more alert then ever and his teachers are impressed with how much his mind seems to have awaken since the surgery.. His doctor has lowered his medication dose twice already since the operation and the goal is to have him off completly by the end of the year... Maybe you should ask your doctor about it.. I hightly recommend it.. It's done wonders for my son and hopefully it could help you with yours.. My heart breaks to hear that someone else has to go thru what I had too with their kids.. Dealing with it is tuff but bearable when you have a good support system and the research tools to deal with it.. Best of luck to you and your son.
RE: new here
Submitted by seeker2 on Fri, 2004-07-09 - 20:08
It's never easy dealing with illness when children are involved? We all recognise that.I did when I read this link sent through to me by a friend who knows Bridgette that posts upon the EFA board and who asked if it could be of use. I'm assured they are a friendly bunch of people( for a busy and large forum.)try there as well as the others ,and hopefully you will be able to find what you are looking for.http://www.epilepsyfoundation.org/epilepsyusa/small-victories.cfmThe person in this link?She too has a son similar in age to yours and with the same condition.She maybe can relate to what your son has and you are going through,for she has experienced the same as you.I admire her courage and her spirit and her frankness at what she has experienced ,and the way that she and her family have coped with this.She speaks frankly within her writing of what she fears and hopes for her son.The myoclonic jerking you are experiencing. with your son is common in JME-though usually occuring during adolesence,and in the morning ,not at night ,but JME often has a genetic basis. In some families, genes associated with an increased risk of JME have been identified on chromosomes 6, 8, or 15(though I'm neither a doc or a neuro.)just what I've read.I'm sure that we wish you well,as we do your son and your family, and that you get the help and support that you need (and don't forget yourself and your needs to enable you to help your son.) and that you do find an outlet besides this one were you can share how you feel.You seem to have your hands full by the sounds of your post, in what you have tried regarding the options open to you ,and your frustration at trying several med combos comes through quite clearly in reading it. I'm sorry that the trial and error method didn't work,though hopefully with combined effort things will work out with time in getting the help you seek. I hope that the links provided do that.If nothing else right now.http://www.cafamily.org.uk/Direct/i17.htmlhttp://www.cafamily.org.uk/quiz.htmlhttp://www.idic15.org/
RE: new here
Submitted by tibet2 on Fri, 2004-07-09 - 10:50
((((lori))))what a tough time your little boy and you have had. i can't give you any advice except to say that in cases of severe epilepsy it is normal to fail several meds... they call it becoming "refractory" to a med. some people refract to meds much sooner than others. myoclonic seizures can be difficult to control. i can tell you where to go for support though. you should post on the MGH (massachusetts general hospital) child neuro board. those parents are real experts. they know the whole routine - meds, seizures, IEPs, therapies, equipment..... and there are parents of other kids with chromosone issues posting there. i think you will find it a very sympathetic forum for parents. here's the link: http://brain.hastypastry.net/forums/forumdisplay.php?f=109someone who knows about alternative therapies is a guy in northern germany named eckhard. they use chinese traditional medicine in conjunction with western medicine to treat their son. you can read about their experiences here - though the translation is still in progress. the link to the english version is on the bottom right of the page.http://homepage.schleswig-holstein.de/egriehl/index.htmthe english language board that he posts on is this one. http://www.debraboard.org/cgi-bin/temp.plsorry i can't be of more help than that.