[crick]

So glad to hear it Jen!! Here's hoping she continues to be seizure free!!

Btw...did dh find his comb? Or did you find it and promptly shove it in his ear?

[ladyjubilee]

Originally Posted by Nevada Jen

No medic alert bracelet necessary. This is not some kid who is going to surprise people with her disabilities. They are pretty dang obvious!

Little Guy has siezures--blank stare, localized jerking and full body.....we also suspect psycho-motor seizures (but since that can look like stereotyical behaviors, its hard to convince medical staff). He is on a maintenance drug and has the diastat.

Initially the seizures were fever related, but then progressed. At one point while on one seizure medication he was having multiple blank stare and localized jerking many times a day and for just about any cause.

The thing is, even though he is very obviously autistic, if I could get him to wear an alert bracelet or necklace I would.

[Nevada Jen]

Crick. Comb was discovered in exchange student's room. I blamed little DS. He said he does not have a good enough memory to remember things like that (which I was well aware of when I chose him to blame it on). I promptly re-hid the comb because I don't appreciate being yelled on my way to work. Training husbands is seriously hard work!

Lady, I am pretty sure she would eat the bracelet. The last time we tried to adjust seizure meds she got toxic and what they kept calling siezures was actually the toxic reaction. It looked like what you are describing. That's what I am hoping to avoid this time around!

[Lylac]

All 4 of mine have seizure disorders of one kind or another. Lyla and Bremon are med free now, but Nate and Abbie both take combinations of different meds. Nate takes Topamax, Gabitril, Keppra and Klonopin. He has 2 types of seizures infantile spasms and Atonic. Abbie takes Keppra and Klonopin, she just has Infantile Spasms.

The thing with seizure meds is, that after a while they have to be adjusted, for various reasons. The main one being that after awhile their bodies become immune to the dosage.

Before I got my kids, seizures would totally scare me. But now, it's a normal thing. The best way that I can explain how it feels..and this was told to me is...it's like being on a 2 week drunk, with a major hangover.

Hope you find the right combo for your lil one soon.

[Nevada Jen]

I think we maybe have the right dose now. We will see. The last few times we up-ed it, it took about a week to kick in and then stopped working afer one good week. Its not the seizures that scare me. Its what they might signifiy.

You all will love this! we take her for an EEG today. She has to be sedated because she rocks her head constantly and won't let people mess with her hair. We take her beyond tired and they still can't get her sedated. So they send us home with a giant perscription for a sedative (I thought it was klonapin but that might not be right). They tell us give her a half a tablet every half hour until she passes out but no more than 4 pills. After we figure out how much it takes, do it three more times to make sure that is the right dosage and then bring her in and they will give her that dose and try the EEG again. Something about this strikes me as bass ackwards. But I trust the doc with my life (she is one of two I have met that I think might be smarter than me) so I am willing to try it. I just wish they would have given me enough that I could test it out on my healthy 4 year old at the same time. Imagine the sleep I would get!