Safety advice for Son

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

seanr53

New
Messages
34
Reaction score
0
Points
0
Hello all. This is my first post, so please be gentle.

My son has recently been diagnosed with epilepsy, however a specific cause is yet to be determined. Here is the background:

1) Age: 15 months. Diagnosed in August.
2) Seizure type: mostly atonic, mostly lasting less than a second. 20-50 per day. Varying from head nods to drop attacks.
3) Medication: topamax, keppra, and Lamictal. Limited control to date.
4) Developmentally delayed - poor motor skills.
5) Has trouble controlling his body temeprature (side effect of topamax?)

I have a question, and would greatly appreciate your feedback and insights on we can we best manage his safety and well being once he lerns to walk. We fear he will do ome serious damage to himself when he can start to walk on his own.


Thanks
 
Hi seanr53, welcome!

There are helmets that children with drop attacks wear: http://www.kidsafetyhats.com/
And you could work on "softening" his immediate environment -- padding sharp corners where possible.

You might want to check out the Nursery Forum here for posts by parents with young children with epilepsy. Have you and your son's doctors considered the ketogenic diet to treat his seizures? You can find info about that here: http://www.coping-with-epilepsy.com/index.php?p=ketogenic-diet

You use the search tab at the top as well to find info on particular topics.

Best,
Nakamova
 
Thanks

Many thanks Nakmova, I'll check that site out.

Can't believe I placed my first thread in the wrong forum. Meant to ptu it in the Nursery.......
 
I agree with all that Nakamova said - especially the ketogenic diet and the helmet.

A lot of it, too, is the same precautions you'd take with any baby/toddler - using baby gates to keep him within your sight and in a safe area, not having glass tables around, using nice soft plastic baby spoons, making sure toys don't have sharp edges, not leaving drawers open, not getting upset when the baby falls so he isn't afraid of walking/falling.... If he's getting bruised then maybe putting a nice thick soft sweater on him to pad the falls.

I can tell you are the kind of mother who will take really good care of him, and expose him to lots of learning and lots of love, seizure disorder or no seizure disorder. It's all going to be okay.
 
Sorry Seanr53

Actually.... I moved your post to the foyer because it was your first thread & thought you'd get more of a welcome to the site here.

You did everything you meant to do perfectly, I should have let you know what I did.

Also, Welcome to the site:D
 
Many thanks

G'day all,

Many thanks for your kind welcome.

This is a fantastic forum. There is so much I have learned, in such a short space of time.

There are also some pretty damn amazing people on this forum from what I see. Look forward to sharing our experiences and your experiences in the future.

Rap53
 
Rap53 (not sure if sean is your name or your childs name... sorry)

Welcome to CWE
I can not even imagine what you are dealing with. What a precious little boy you have. He seems very happy, which I am sure keeps you putting one foot in front of the other every day.

My daughter has tonic clonic seizures brought on by blood sugar imbalances. We seem to be managing them at this time, as she has gone 7+ months without a seizure. Yet I always was concerned about falls and hitting her head, luckily she seemed to go down fairly gracefully, only hitting her head a few times. Yet I can imagine multiple falls a day, would be quite worrysome. I hope you can figure out a way to control them, prior to any injury.

I had a son that fell out of a sassy seat (the kind that you attach to the edge of the counter ledge) he hit his head quite hard on the ceramic tile floor. I was very upset, and the doctor reassured me. Told me that the head is designed to withstand falls. I asked if I should give him tylenol for pain... and he said that if it would make me feel better I could (my son at that point was playing with a balloon). I think what he was saying is, our kids are built fairly tough.... but I know I would be worried too.

Turn him into a super hero with a special super power helmet :)
 
Back
Top Bottom