Hi, I haven't posted in here in a long time. But Derrick is having lots more seizures again. He is clustering with about 2 to 3 gone seizures a night, three to four nights a week. The thing that makes this so hard is that his seizures he usually knew they were happening, and these he doesn't.

And since he has complex partial, simple and 2nd generalized I'm not sure
what they categorize these in. Because we aren't seeing them. Just the
off and the after effects of them. Or the fact that he missed something
that we know happened.

So its hard to know. He needs fast and immediate sleep, and sometimes
is just so tired and just is out. But its not for the rest of the night usually.

But that is another way to know its seizures. So we are waiting on a
call from neuro for a add probably of the fourth seizure medicine along
with his VNS. I've been putting this off since August 2006 and I know
its time. I wanted to get him off a medicine then add another if necessary
but we just cant' get one gone. He is maxed on the other three.

Donna

Have you had his VNS evaluated lately? He could have a lead impedance or be at EOS (end of service)

Anytime there is a change in seizure patterns, the VNS should be checked first before adding more meds.

Hi Donna,
I'm sorry to hear that Derrick is having a hard time with his sz. I have the cp and simple partial along with absence sz. My epi told me that cp sz. can be the hardest type of sz. to control. I know I've been on 13 different AED's and not a single one has stopped my sz. I found that mysoline and diamox along with taking vitamin B12 on my own has been the biggest help.
When Derrick has a cp sz. do you notice if he's smacking his lips, pulling at his clothing, having a hard time trying to speak, or possibly wandering around not realizing what he's doing? All of this happens to me except pulling at my clothes during a cp sz.
Cut Derrick back on starch foods and carbs also keep him away from nutra sweet (ex. diet soda) not to mention caffeine. Here's wishing the both of you well and May God Bless You!

Sue

Well we are waiting on a VEEG to see what to do next. It will be his
4th. We have never been allowed to reduce the meds in or before one.

But maybe this time they will decide to let us. Since we really need
to change a medicine.

Donna

Donna and Derrick,

You are in my prayers. Please keep us imformed.

Darlene