Walking in a "cloud" after seizures

[donnajane]

My sons medical team are still on the hunt as to what is going on with him. A few weeks ago he had a long event where after waking he couldn't use his left arm, eyes were rolling and for several minutes he was frozen on the spot. When he tries to walk it was like he couldn't remember and fell over and then didn't remember how to get back up. Since then most days he has had periods where it is like he either can't or won't walk, he usually also has small events/seziures as the same time where he will lay down, wide eyes but he's not there then he will come back but not be able to stand or balance let alone walk. In amongst this he has short times where he can smile sometimes stand and take a couple of very wobbly steps but then its back to his strange state. Also usually just after or sometimes during these events he has other small events where he will suddenly arch back and eyes rool back but then just as quick he's back.
His Nureo asked me to do a test on his hip joints to make sure they were not the issues, I had the nurse at his child Care do the test as well in case I had done in incorretly she agreed with me they seem fine. He has his hips checked every 2 months when he see's his Paed re his slower developmnent, so I was not suprised at this. The other thing the Nureo said it could be was that Seizures overnight can throw his brain and its like he's walking in a cloud? Does anyone know what this means. I will ask the Nureo next time I speak to him as he gave me this info by email. We are still hoping he will bring my sons MRI earlier as although his good periods are usually amazing now, almost like most 16month olds, his other periods seem to becomming longer.
Thanks
Donnjane

[Kerum]

I am still new to a lot of seizure stuff....but from my experience with my own son (he's 7, started having seizures when he was 5) he can't talk for a short time after his seizures. He recently started having something called "Todd's Paralysis" after his seizures as well. He came down one night and I'm still not sure how he made it down the stairs without breaking an arm or something. He couldn't stand, wasn't using his right side and it looked like he had a stroke. Scared the crap out of me.

The only time he's ever had a seizure during the day, we saw that his coordination wasn't as good as it normally is. He has a simple partial seizure at school one day, I brought him home as I was scared he go into a full on seizure and I didn't want them to have to worry about it at school. We had him rest for the majority of the day, but he had baseball practice that evening and since he seemed fine, we let him go. We saw immediately that his batting suffered a LOT. He couldn't keep up with the pitches and only hit one ball. He seemed slower even when walking or running.

All this to say that just when you think that something is their "normal" episodes, it seems to change. At 16 months old, their brain is changing every minute it seems. I'd keep calling or e-mailing the behavior you are seeing to the neurologist. That's what I keep doing here lately since it seems we are in a time when his seizures are obviously not controlled.

[Nakamova]

Seizures overnight can throw his brain and its like he's walking in a cloud? Does anyone know what this means?

Maybe just that some of what you are observing is post-seizure confusion, exacerbated by poor sleep? It sounds like whatever is going on involves seizure activity near the motor cortex part of the brain. I hope your neurologist gets a handle on things soon.

[donnajane]

Thankyou for the replies. Kerum my son seems to have a similar state to how you described your son at baseball. I recently said to his nureo it is almost when he is in this state as he has gone back to before he could walk. He's not on any meds yet as brain is still developming so much I think Nureo wants to see where he "ends" up in relation to seizres etc and has said he will only medicate him if he feels it is going to improve his quality of life and do him no harm.
Nakamova thankyou I had not heard of post seizure confusion before. You all are teaching and helping me so much with my sons condition. Thankyou

[Kerum]

Seeing your child doing something you know isn't normal for them is unsettling. Then to not have any answers as to why or not have any options to stop it is even worse. I hope they find some answers to set your mind at ease!