[HH'sMom]

Hello! I found this website thru a neuro mag at yet another neurologist's office visit for my son, Hunter. Hunter was diagnosed w/epilepsy a year ago February when he was 2yrs old. He has partial complex seizures. I am not convinced it is epilepsy that is causing his seizures and have been on a quest to discover WHAT is the cause. Tried 3 different meds last year and all made seizures worse plus side effects.
I'm hoping to learn from other peoples' experiences here. Thank you!

[Chemar]

welcome to NeuroTalk HH'sMom

[Darlene]

Hello and welcome to NeuroTalk. I have tried a number of medicine and they didn't work. At this time though I have had good luck.

What medicines has been on. For years I was on dilantin and mysoline. About 5 years ago a new neuro change my meds and I have had better results.

Hope to hear from you. Give Hunter a great big for me.

Darlene

[Chlobert]

Hello to all! Since I'm new to this site, I thought I'd just give an overall of my issues. I have an intrathecal pain pump implanted for failed back and chronic lower right back pain. The meds in the pump are dilaudid, clonidine, and bupivacaine. I also have a spinal cord stimulator in my neck for chronic neck and right arm pain. For the most part, the pain pump does a very good job, although at this time, I think I need another adjustment upward in the pain meds because I'm unable to walk very far without the break-thru pain starting up. The stimulator does an excellent job at controlling the neck and right arm pain. My pain doc suggested the stimulator as something to control my neck and arm pain because eventually I will need to have surgery on my neck. As of the MRI I had done in 2005, I have severe problems with 4 of the 7 cervical vertebra, as well as severe spinal stenosis and my neck is curving outward instead of inward (which is not outwardly visible, but the neurosurgeon said he could see this on my MRI). The neurosurgeon said that surgery would be inevitable, and I will know when that time comes. Hopefully the stimulator can "buy me" at least 10 years or so. I'm hoping by that time that there will be way new and improved procedures, and the surgery maybe won't be quite as major & serious as the neurosurgeon predicts. I'm absolutely terrified of the surgery, and it seems I'll probably lose most or all movement of my neck, and I'm just too scared to even think of that! I'm 47 years old, and all of my problems began about 7 years ago. None of the Dr's know why my back is degenerating so quickly, and at my age. Fortunately, with the two "machines" I have in my body, I'm able to work full time, plus overtime (an average of 45 hours per week). I'm hoping my body will allow me to continue to work indefinitely, but the outlook isn't the greatest. If I allow myself to think too much about the future, I get pretty scared; afraid I'll have to quit working, and maybe end up in a wheelchair. For now, though, I'm SO thankful to have the pain relief I do get. Of course, all of you know with chronic pain that it never is completely gone, but at least my Dr's have been able to make it tolerable for me. Anyway, that's my story at this point in my life. I look forward to reading posts and maybe contributing any help I can. Thanks for reading, and I hope everyone can have as pain-free of a day as possible! Take care! Chlobert (my user name derived from one of my kitties!)

[LIZARD]

(((((((((((((HH'sMom))))))))))))))).

Has he had an MRI? Any other tests to determine what's causing them?


LIZARD, sending

[HH'sMom]

He's had an MRI, EEG and 24hr video EEG. He's been on topamax, tegretol and depekot. He hasn't been on any meds since August. H ewas recently prescribed Kepra, which we haven't started yet.
Has anyone tried kepra? Side effects? Thanks!

[Darlene]

I am on Keppra, and seems to help me a great deal. When I have a spell they are quiet a bit shorter and even some people don't even know I have one.

The other pill I am on is lamital.

My neuro after taken them for a while my neuro is easing them off.

Hope this might help you.

Darlene

[HH'sMom]

Thank you for the info!
I just fret at having to put a 3yr old on any meds, but his sz are getting a little worse.

[LIZARD]

Originally Posted by HH'sMom

Thank you for the info!
I just fret at having to put a 3yr old on any meds, but his sz are getting a little worse.

I know this struggle--really--but szs are a different game. It really is important to get them under control. It's not like a behavior that you can deal with through other means. He wouldn't necessarily have to have a lot of med, or even have to take it forever. He's very young yet and can certainly outgrow them, as so many kids do.

,whatever you decide!

LIZARD

[theoneRogue420]

Hi HH's Mom Welcome!

I have several other major health problems, but my newest one is epilepsy. Apparently, it could have been caused by my rsd/crps, but noone knows for sure. (Do they ever?)

I am also on the journey to find the right meds, I send my hugs to Hunter. The switching can be bothersome, but in the end we can only hope that we find what makes us well.

I wish both Hunter and you the best of luck.