hi all!

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!

L

Linds

New
Messages
3
Reaction score
0
Points
0
My name's Lindsay. I'm a military wife and mom of 3 boys 3, 2, and 1. They are wild and definitely make life interesting. My oldest son had his first seizure at 8wks old and stopped breathing. Our life has been crazy since. We don't have family history of epilepsy, so this was a new thing for all of us. My son's seizures have been changing from the first few months where it looked like you hit the baby pause button, to myoclonic, to petit mal...he's been medicated since he was 2 but has always had breakthroughs until we moved to WA and they adjusted his meds (Topamax) to a more appropriate level. He just had a pretty scary seizure the other day...I'm not too fluent yet in technical terms, but it was 5 minutes of drooling, chewing, and lots of jerking. His meds received another increase after that so hopefully he'll be ok now. We have behavioral concerns with him but we're unsure if it's Topamax related (I've read many bad things) or him just being 3. His development is pretty delayed, some docs have said that was seizure related...it's all pretty confusing to me. I just want answers...as any mother would. ;) I love all the info on this site!
 
Welcome

There is tons of info on this site, it's one of the things that I Like about it. I'm also the oldest child & was born with epilepsy. My seizures have changed numerous times, apparently that's not uncommon, especially at times of bodily changes.

As far as medical terms go, you can either look them up in a medical dictionary http://medical-dictionary.tfd.com/ or just ask, the people here are pretty helpful and supportive.

In the meantime make yourself at home & check out all the different stuff we've got.
 
Hi Linds

I was born not breathing. I am also developmentally delayed. I didn't walk or talk until around the age of two and a half.
I still don't feel as though I really lost too terribly much, but please let your son play and feel as normal as possible.
My parents were 'protective' of their 'defective little girl', and I really think that they were angry over something that wasn't there fault, which was more hurtful than helpful.
Your three kids need unconditional love, and your oldest needs to realize that he is not a freak.
I have gotten an education here. You will too.
Don't forget to take good care of yourself too.
And please remember: this is not your fault. You did nothing wrong. Neither did your kids, nor your husband.
Shelley
 
Last edited:
My granddaughter has E inherited from her mother, my daughter. The seizure you are explaining sounds like a Complex Partial seizure, the same as what my granddaughter has. It is so hard to watch someone you love so much go through this and feel so helpless. Luckily Nicole has been seizure free for almost 2 years now. Everyone here is so helpful and caring, so glad that you have found this site.
 
hi Linds! Welcome to CWE. There are plenty of parents at this site that have gone through similar experiences. So feel free to ask questions, vent, or chime in.
 
Hi Linds, belated welcome to the forum. :hello:
 
You must log in or register to reply here.
Back
Top Bottom