Oops intro

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!

A

Aidans family

New
Messages
13
Reaction score
0
Points
0
Posted this in the nursery but I guess it belonged here.

Hi, migrated here from the EFA website. Hadn't been on there in awhile and went back and couldn't post anymore. Aidan was diagnosed at 6 mos but had seizures before that. He's turning 4 in Nov. He has cluster seizures normally about a month or so apart but this week he started on Thurs, went into the hospital, got discharged on Saturday then started another cluster last night, maybe one of the worst clusters I have seen since I've been in the picture almost 2 years. We are on medicinces 13 and 14 I think. Has a VNS set to rapid cycling. He's not a surgical canditate due to his seizures not being localized. We are out of ideas and hope some others have some that we hadn't heard of. Tried the modified atkins, no luck, not a candidate for keto, he had failure to thrive and has a feeding tube and already so drastically under weight.

Tim
 
Hi Tim, welcome to the forum. :hello:

Aidans family said:
... He has cluster seizures normally about a month or so apart but this week he started on Thurs, went into the hospital, got discharged on Saturday then started another cluster last night, maybe one of the worst clusters I have seen since I've been in the picture almost 2 years.
Click to expand...

:(

Aidans family said:
... We are on medicinces 13 and 14 I think. Has a VNS set to rapid cycling.
Click to expand...

I understand that there are several different parameters that they can adjust that might affect efficacy. Was it adjusted recently?

Aidans family said:
... We are out of ideas and hope some others have some that we hadn't heard of.
Click to expand...

Most of what I know about is posted in the chart (see link in my signature). Maybe this will help: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/
 
His meds haven't been changed in a little while, we've tried all sorts of combinations on those. They increased the herts on his VNS last week when he was admitted but I know that my wife was checking into it. I'm actually at work now (and you thought Cops actually did work on those computers in their cars ;) ) Thanks for those links, I'm checking them out.
 
You must log in or register to reply here.
Back
Top Bottom