Epilepsy - trying to walk when coming out of a seizure!

amother

Tue, Feb 01 2022, 8:28 pm

My son has had epilepsy for several years and has tonic clonic seizures from time to time (we are working with his doctor re medication, tests, etc). The last few times he had a seizure, instead of falling asleep on the floor for a few minutes and then we help him move to his bed for a (multi-hour) nap, he tries to walk himself to bed once the seizure has finished! This sounds great in theory, BUT, he is so off balance and exhausted that he lands up knocking things over and falling down several times on the way to his room, even with the family members around him trying to catch him, hold him up, and get him safely to bed.

Has anyone else dealt with this? We are brainstorming at home ways to keep him safe when this happens (including rearranging things so that a wheelchair or something similar could be used to move him if he's that determined to go), but I'm hoping someone on here could give me some input.

I don't think he has any awareness in the moment that it is not safe for him to be doing this, he just knows that bed is where he goes after a seizure and so he tries to head there.

Note: He is too big for us to carry, so that's not an option. He also has developmental issues, so discussing this with him and having him come up with solutions isn't going to work.

Thanks

amother

Sapphire

Tue, Feb 01 2022, 9:33 pm

I'm sorry if I'm totally off here. I'm just thinking of a student that also had seizures pretty often, and would try to get up right away.
As she tried to stand up, when I saw it wasn't safe yet for her to, I'd tell her, "Sara, you're ok. You just had a seizure. Lie back down" and she'd lie back down. I think she was just confused, thinking that happened, and her knowing she had a seizure was easier for her, and then she was able to lie down. Not sure if that's your son's problem-does he know that he just had a seizure, as he's trying to get to his bed?

amother

Wed, Feb 02 2022, 2:19 am

amother [ Sapphire ] wrote:

I like your idea, and it's certainly worth a try. At least trying to convince him to lie down for an extra minute or two might make a difference in how stable he is when he tries to move.

I can't be sure that he knows exactly what's happened as it's happening, but he does know that we get him into his bed after a seizure, so I believe he is simply trying to do what he knows is part of his post-seizure routine.

amother

Wed, Feb 02 2022, 2:20 am

amother [ Valerian ] wrote:

Is a service dog an option?

I've heard of service pets for vision issues, as well as for emotional support, but I'm not really familiar with how they are used in terms of seizures. Can you elaborate?

amother

Snapdragon

Wed, Feb 02 2022, 2:28 am

Maybe you can try bringing him a blanket to make him confortable where he is? Reasoning with someone who is postictal won't be very effective as they are not 'all there'. I'm wondering if you brought hom something familiar from his bed, pillow or blanket, he might not try to get up?

amother

Catmint

Wed, Feb 02 2022, 6:20 am

amother [ OP ] wrote:

I've heard of service pets for vision issues, as well as for emotional support, but I'm not really familiar with how they are used in terms of seizures. Can you elaborate?

the only service dogs for epilepsy I'm aware of are ones who can sense a seizure coming and get the owner's attention so they can lie down in a safe space before it hits

Mommy1:)

Wed, Feb 02 2022, 6:33 am

amother [ Snapdragon ] wrote:

I was going to suggest this one! another similar suggestion might be a special blanket to bring to him in this situation - super cozy, warm, fleece, easy to wash in the machine type.

Edited to add - refuah shelaima! May the True Healer guide the doctors to help treat him so that his seizures stop and may Hashem heal your son altogether! May Hashem give you strength!

amother

RosePink

Tue, Sep 26 2023, 11:24 pm

When this happened by us (to an adult), once she was somewhat conscious, we directed her to the couch (nearest safe place) where she rested as long as needed (including having another seizure, etc. - that person is now on a better med and seizure free for a few years bh).

And yes, let them rest it is very uncomfortable and can take hours to get back to oneself.

(Dealt with it with relatives, a guest, campers in camp and dorm - really heartbreaking but all minus the special needs ones are married now bh)