Andrew's startle reflex has turned into seizures. We are no longer just having tonic seizures. No, now he does all of the grunting, jerking, twitching that comes along with seizures. About 70% of his seizures are induced by noise.

The phone rings and he has a seizure. Same with the dog barking, elevator dinging, door slamming, school bell ringing, etc, etc. You get the picture.

So tonight I put him in bed, he had been there about 20 minutes very quiet. I decide I need to go to the bathroom. I flush the stinking toilet and he has a seizure for 3 minutes. I can't even go to the stupid toilet without him having a seizure.



Laura (mommy to Andrew, almost 6 yrs w/ HIE, spastic-quad CP, etc)

Laura, I used to ride on a bus with a young lady who had severe seizures with loud noises too, especially when the doors of the bus slammed, she had really bad ones. Fortunately, our regular driver always closed his doors very quietly, but if we had a sub driver, it was guaranteed she would have at least one that day on the bus. She was our last pick up and first drop off so that her parents didn't have to worry (nor did the driver) that she would have more seizures induced by loud noises.

But, another thing they did for her was to get her some headphones, they are a special kind that you would wear in like a wood working shop or a metal working shop... some place where the noise level is really loud, but you need to protect your ears from the high decible noises. These head phone cut out much of the noise, but allow human voices to be heard clearly. They worked really well for this young lady, and they might work for Andrew too. They are big, and bulky, but if they afford him some protection from those nasty seizures, it might be worth a try?

I'm sorry you are having to go through this... Wish I had more than just a far fetched possiblity for you...but thought I'd throw it out there just in case.

Dori

Hi! I was wondering if there might be something in The Out of Sync child that addresses hypersensitivity to sound? I'll try to look it up later for you. She has great ideas for over/under sensitivity in general.

Have you tried an audiologist for ideas? Maybe your son has something correctable in the sense of, maybe like they can help hard of hearing kids hear better like with cochlear implants, maybe there is something to help his brain not overreact to sounds. No clue, just thinking out loud.

Have you done an EEG to see if the seizures are indeed localized to the part of the brain responsible for responding to sound? There may be some clues there.

In the meanwhile, I'd be looking into the headphones that were suggested.
Perhaps they could work in this way. If you could stop him from having the seizures from the sounds for long enough, his brain could retrain itself to not reacting so badly to the sounds later in life. Like being on meds. it often takes two years to retrain your body before they can trial you off the meds and see if your body can manage without them now or if it needs to be part of life.

I'm sure you are a bundle of nerves with sounds. Is he sick too? maybe that makes the difference?

anyway, I truly hope things improve. Will you be considering seizure meds?
hope they do the trick if you are.

you have a sweetie there. sorry it's been so tough.

lucinda

I don't have any suggestions although I like the headphones idea.

Just wanted to send you some gentle (((hugs))). I hate seizures. Ugh.

(((((((((((hugs)))))))))))

Thanks ladies.

We have thought about head phones but we weren't sure he'd tolerate them very well. Andrew has always had very sensative ears. We tried doing the therapeutic listening with the headphones and that didn't go well at all. And his hearing is and always has been amazing. Everybody has been amazed given the extent of his brain injury.

The seizures somehow seem to be more tone oriented. For example, we were at a very crowded reception. Lots of people, lots of talking. Andrew did absolutely fine through the whole reception until about 2/3 way through someone let a door close hard clear on the otherside of the room. Instant seizure.

We have started to wean Andrew off of his Clonazapam as of yesterday. It hasn't done any good at all. And last time we reduced the dose (end of July) he started having myoclonic jerks up to 3 in a minute all day for 2 days straight. So I'm not expecting the wean to go real well. Then we're going to try some Depakote.

So continues the rollar coaster.



Laura

((hugs))

I really hate seizures

I hope the wean goes better than the last one.

Depakote was the only AED that controlled Rileys seizures BUT once she became toxic they couldn't get her levels to remain stable again.


Seizures BITE!

(((Hugs))) Seizures suck.

I like the headphone idea, too. I used to fly around in the back of a C-130 and wore those things. I didn't like the new headphones they got because they squeezed my head too tight and would give me a headache. But, the old ones cut out enough of the noise and were loose enough to do the job.

I'm trying to remember... is Andrew tube fed? We got rid of Tom's myoclonic seizures by going dairy-free.

Also, Tom's ears are by far the most sensitive in the family, but nowhere near what Andrew has. Smoke detectors (when the batteries are dying and they chirp), used to really freak him out. I'm not used to him crying very often and it took 10 minutes to calm him down afterwards. I would send him with the girls to a far bedroom and shut the door to change the batteries. Ugh! (And this is California, land of the small houses and high prices. Hard to get far away from the smoke detector.) Anyway, yesterday another smoke detector began chirping. I changed the battery with Tom in the room (Claire told him to cover his ears), and he had no problems at all with it. I'm thinking it's gluten related.

You know, I thought Tom did well on Depakene (the liquid version of Depakote), but I had to look up how long he was on each medicine for his DAN! appointment. He really only had myoclonic control for about 2 1/2 months on Depakene before we started playing around with increasing the dose. We finally lowered Depakene a bit and added on Keppra. That stopped the myoclonics and we were able to go monotherapy on Keppra. Keppra monotherapy worked fine for stopping the myoclonics. (Then, we went dairy-free, and haven't seen a myoclonic seizure since.)

The other thing that just popped in my head... several of the posters on the Epilepsy forum (at least, the old BrainTalk forum) who were later diagnosed with Juvenile Myoclonic Epilepsy (which I'm assuming Andrew does not have) talked about being easily startled as kids. It didn't take much to make them jump, or tip over their glass, or drop something, etc. Somehow, the super-sensitive hearing triggering a seizure strikes me as being related to that jumpy myoclonic seizure issue.

Don't know if any of this helps, but thought I'd throw it out there. Hope the Depakote helps Andrew.

((((Laura)))) I have no words of advise......Just wanted to send some hugs and prayers your way........