New and looking for some help!!!

[Melissa Hawaii]

Hi everyone! I hope all of you are having a great day!! I am a mother of an 11 year old boy. My son had his first big seizure just shy of his 10 year birthday. We were so scared, confused and frustrated all at the same time. My son was put through every test imaginable and all the doctors kept saying was, "we found nothing, and your son is a completely healthy 9 year old boy. We can't explain why he is having the seizures." Needless to say two weeks went by with multiple seizures adjusting of meds, we finally got them under control. He is currently on Tegerotol (2pills twice a day) and Keppra (4ml twice a day). Throughout the first year he experienced numbing continuously but was functionable...he played soccer, road motorcycle and seemed to be doing everything a boy his age should be doing. Almost a year to the day of his first seizure, he had another, "big one!" We quickly took him to the ER where they did blood work and found no trace of tegeretol in his system. My son decided he was cured and stopped taking his meds!! So, we thought now we know he really needs it and we started watching him take it more closely. He seemed to be doing well again but the numbing in all his extremeties kept coming back. Fast forward a couple months and he started having the numbing, then he would fall down and would not be able to move. He could talk to me, but coud not move his legs or arms. It would last a couple minutes then go away. It was so weird. Of course , his neurologist kept upping the meds (Keppra). We took him to Disneyland in January and he was fine. No Numbing. We came back and the whole month of February, he kept falling in school, getting numb again. He missed alot of school He is so active that I hate seeing him like this. We had such a better year last year, it seems like I'm starting all over again. He's not having the chronic tonic seizures anymore, which I am grateful for. I'm wondering is it because he's getting older and maybe his body is changing? There are so many kids out here that all of a sudden start having seizures, the doctors don't know why and then a couple years later it just stops. Usually after puberty. I'm trying to see if anything triggers his numbing....the only thing I can think of is when he plays really hard and has no water. He likes basketball and in the last two weeks he has had two of those what I call, "numbing attacks" while playing ball. The neurologists said that he is having an absent seizure. For all that he goes through he is still in good spirits. The good thing is that he doesn't remember anything when having a seizure. But I'm sure it's scary when he wakes up. Not knowing what happened. The kids at school are so good to him. I work in education and my fear is that this might get worse. My son has no other disabilities and is in all regular ED classes. He is testing for a private school tomorrow Do you think there is anything else I can do for him? Is he even on the right meds? Is there a chance he might even out grow this? Sorry so many questions...... I can give advice to so many parents, but now that I am the parent with a child who is diagnose with partial epilepsy I can't seem to tell myself anything that will help. If anyone would like to comment...PLEASE do so!! I would greatly appreciate it. Thank you so much.

 

[Nakamova]

Hi Melissa Hawaii, welcome to CWE!

The "numbing attacks" you describe sound like more like atonic seizures (also called drop seizures) than absence seizures. See: http://en.wikipedia.org/wiki/Atonic_seizure

The meds used to treat atonic seizures are usually Valproic acid (Depakote) as a first choice, Clonazepam (Klonopin) as a second choice, followed by ethosuximide (Zarontin) and acetazolamide (Diamox). You may want to check in with the neurologist to see if a different med might be helpful.

As to what causes them -- you are on the right track by looking for triggers. It may well be dehydration or electrolyte imbalance, since those can be triggers for many. Fatigue is the #1 trigger -- is it possible that your son's seizure-free time in Disneyland had to do with his vacation sleep schedule? Other triggers can involve nutritional sensitivities (to things like aspartame or MSG). And hormones and changing metabolism also do play a role. Your son's medication levels may be fluctuating in response. Does he take his meds at the same time every day? Has he had his levels checked recently?

I hope his tests go well tomorrow. You must be a very proud mom, with good reason.

Best,
Nakamova

 

[Dignan]

Don't know if this advice will help you, but you might want to get a second opinion from another neurologist. Not saying what yours is telling you is wrong or anything, but my first neurologist was the one on staff at the hospital when I first had a seizure, and not knowing any better I assumed he knew what he was doing.

He put me on meds that after 2 years caused me to have a rash and he refused to take me off of them because he said a rash would have developed right away and not waited two years. It was only after I fired him and went to a person recommended by the epilepsy association that I changed meds and what do you know, the rash was gone for good.

Now I make a practice of verifying what a neurologist tells me and not taking any of their advice as the gospel. You may already be doing that, but just thought I'd add that...

 

[ajax]

Are you in Hawaii? There's a good specialist there that I've seen, Dr. Alan Stein, who could probably get your son dialed in a little better. Like Nakamova said, different meds work better for different types of seizures, and he'll be able to determine what exactly is going on with the numbing and everything.