your disorder and what meds do you take for it?

hugs

My son has spastic quad CP. He was about 7 when he was dx with paroxysmal dyskinesia. He is now 11 1/2. He takes no medicines at this time as the possible side effects aren't worth the risk. He has episodes daily.

I was diagnosed with essential myoclonus a few years ago. I've never taken the Klonopin (sp) I was prescribed. I take alot of B vitamins & try very hard to reduce stress which brings on the jerking. I gave up driving 2 years ago as I was afraid my foot would jerk off the pedal or my hand would jerk off the gear shift.

My myoclonus has definite "triggers". Noise,lights,windshield wipers,dogs barking,etc. can bring it on. I have no control over it but it's not painful-it has kept me rather reclusive because I LOOK like a freak when it's severe & it scares people!

My episodes are few & far between at this time & hopefully the worse is over for me,got too many other issues to deal with!

I do get myoclonic jerks under my eyes off & on these days.

hey there rockin4epilepsy,

i wanted to say - i really admire your campaign and your efforts.

your love for your little guy shines so bright.

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i hope you aren't having to cope with movement disorders in your life/your family, etc. too.

my child experiences generalized progressive dystonia and dyskinesia, cerebral palsy, seizures....

he takes artane and prn diazepam/lorazepam. ultimately he may have dbs surgery (deep brain stimulation, similar to VNS but electrodes are implanted deep in the brain). The NS backup plan is to have a baclofen pump implanted.

-wonderboy's mom

hello joaD, don't know if we've met before, but wanted to say hi.

i am glad for your child that you are able to manage without meds = they are rough! it's nice to read about your child, and to have fellow travelers on this road of cp+dystonia/dyskinesia.



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hey there buttons! I am so glad to read you are doing better with the myoclonus. what wonderful news.

you were a big help to me over my son's myoclonus, which has almost completely disappeared now except when he has a seizure.



wish it would have taken the dystonia with it.


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wonderboy's mom

Born with hydrocephalus, kidney removed at three months, shunted at 3 months (51 years ago this month). Developed epilepsy in the 1960's but it has been really beyond the reach of medication for the past few years. Short term memory loss. Other than that I am doing ok.

Rarely take inderal any more for et. it has stopped working at the highest dosage. Dilantin and phenobarb for epilepsy. Seizure free since 1990