Hey everyone!

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

AmyGail

New
Messages
2
Reaction score
0
Points
0
Hey everyone,
My son was diagnosed with epilepsy late last year. I have to say it was one of the scariest experiences of my life! The have had him on Kepara for about 5-6 months and he is just not my child. His level of agressiveness is mind blowing. Almost every morning I set down and cry, just because of how our day has started out, I don't want to even get started on what his brother and sisters are going through. They have recently started him on LAMICTAL, we are only 5 days into trying this new drug. I have been checking him everyday for any signs of a rash and tonight, I found som little bumps on his back and shoulder. He had a reaction when he was around 3 that was a precursor to SJS and I am kind of scared about what this can mean. I am going to check him out in the AM and if it is any worse or still there I guess I'm calling the Dr. I am so grateful to have found this site, I really could use the support and experience from others!
 
Hi AmyGail, welcome to CWE!

I am sorry for what you and your son are going through. Is he still on the Keppra in addition to the Lamictal? if so, you might want to ask about trying him on a B6 supplement -- it has helped others with the "Kepprage" side effect. If he's made the transition to Lamictal, I agree that you should definitely keep your eyes out for the rash, and don't hesitate to contact the doctors if you see even the mildest possible signs of an allergic reaction. Is there any chance you can start him on a lower dose, or is he already at the lowest possible increment?
 
Thanks for the advice! He is still on the Keppra, I am giving him the B6. Does it take a while to work, or is it something I can see soon? Just like this morning, he almost broke his brothers arm, over nothing. I just don't now what to do anymore! I'm not giving up though, the bumps are not getting anyworse, so I haven't calle the Dr yet. Again thank you all for you support!
 
I would give the B6 a week or two to see if it makes a difference. It doesn't help everyone, but I've got my fingers crossed for you and your son.
 
Good luck, my son is also on Keppra and has been for about 9 months, since diagnosis. He is now 8. You are not alone, even though it often feels that way.
 
You must log in or register to reply here.
Back
Top Bottom