Blogging about life and raising our five kids with Down syndrome.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Friday, January 27, 2012

Very concerning! Anyone with seizure experience please respond!

In a couple of posts I've commented that Asher does this funny little blinky/winky thing at us when we tell him no, or to do something he doesn't want to do. It just lasts for a second, and it took me many tries to be able to catch it on video.

And then today happened. Today something is wrong. The morning was going along just fine and everything was normal. Asher and Axel were in the bedroom and I went in there to see what they were up to. That's when I found Asher with his face going crazy. He was grimacing and winking/blinking constantly. It looked very seizure-like. I was able to talk to him, but I'm very familiar with Angela's simple-partial seizures that she can also talk through. (not always making sense, but she can talk.) What Asher was doing was very different from Angela's seizures.

Having a son with Tourette syndrome, I would say it was very tic-like. It lasted for several HOURS. He went down for a nap a couple hours after I discovered it and woke up still doing it. Later in the evening it was gone, then showed back up about dinner time. By the time Dean got home from bowling it was no longer constant, but it was there.

I was able go get several videos of this during the day. The first is during lunch. Although he's interacting, he seems confused. Notice there are blinks, eyes rolling upward, and the mouth grimace to one side:


This was about 2 hours later as we got ready to go to therapy. He seems frustrated by it:


I've put in a call to have him seen by the pediatric neurologist. Of course I'm leaving town on Tuesday. UGH!!! I'll only be gone a couple of days, but still!

Edited to add: OMG, I totally forgot that I was told Asher was on phenobarbital for years for what I was told were febrile seizures. Ummm..."febrile seizures" are not treated on a daily basis. So, this little event makes me wonder if there is more to the story. Anyway, he'll be seeing a neurologist, but still this is concerning.

8 comments:

Kathy said...

do you think it has anything with him now being able to see? Poor little guy, that cannot be fun.

Leah S. said...

My only question about that reasoning, is why was he not doing it the two full days prior that he was wearing his glasses, and why was he not doing it all morning? It started sometime around 10:30 -11:00 a.m.

Speechless said...

I'm not very familiar with seizures, but I have a student who woke up with major facial tics one day out of the blue. It was a med change; did you add any new meds or could it be withdrawl from a med?

Leah S. said...

As far as we know he was not on any meds in the orphanage. He was on phenobarb but that was discontinued in 2008. The only med he's on now is iron supplements, which he's been on for about 3 weeks.

Mel said...

Kati has a seizure disorder, and while they are different in everyone, I don't think that's a seizure. I think you are on the right track with "tic". Of course, that's just my opinion and that and a dime won't get you anything! :) Good call getting him to the doc. I hope it's something explainable. Poor lil guy! How is he today?

Leah S. said...

Mel, he had a few little blips last night, but nothing so far this morning, and he's been up for a couple of hours.

CJ said...

I have very limited (only ONE episode)experience with seizures, but I am familiar with tics and I think that's more what you're looking at. Regardless, I hope you get it figured out. He is just beautiful!

Maren said...

Maybe something to do with the eye muscles waking up? Wasn't his left eye the one he wasn't using properly? I will still get it checked out though.