Don't know what to do.

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Beth B. in TN
Regular Member

Date Joined Oct 2005
Total Posts : 83
   Posted 1/20/2006 10:03 AM (GMT -7)   
Kimmy had a "hard" seizure yesterday at school. Okay I'll admit she has more in school than anywhere else and I don't know why. I had asked to school nurse to call her neuro, because these hard seizures need to stop, right? I wanted her to tell him how Kimmy does during a seizure. He has done 2 EEGs and neither showed anything. An MRI showed scarring on the temporal lobe (left, i think).
Anywho, the doctor calls me this morning and asks, do you think she has psychological problems and is faking these. I said "Doctor, I have noticed her eyes before and after seizures. Her eyes usually get really pinpoint before a hard seizure, sometimes an hour before sometimes right before. And after a "long" seizure her pupils have been known to be two different sizes, one small and one huge. "
He said well that is not something that can be faked. I said the school nurse is ready to talk to you to discuss the situation or provide you with information as she has now been present for quite a few seizures. He just told me to come in next week. I said Okay.
So, I drive to the school to see if he has called the school nurse and discuss the (if I'm wrong someone whose seen a seizure please tell me) I'm praying and driving and thinking, Kimmy was never an attention seekers. None of this makes sense. Okay he had to ask, calm down.
The school nurse told me she called the doctor's office twice yesterday. The first time she called and left her number and asked he return her call. The second time was late in the day. The doctor's wife picked up. She said "I see here he has a message you want to talk about her behavior". The nurse said "no, I want to talk about this seizure today." So, then this morning he calls me and questions whether she is having true seizures.  He didn't even call the nurse. I was so confused, upset, tired.
He's only tried Keppra and trileptal so far. He still has her on both. keppra 1500mg, and trileptal 300 mg twice a day for both. I don't feel he's being aggresive and its apparently that he questions her seizures. AHHH!
By the way the nurse told me she noticed something yesterday and that is why she wanted to talk to the doctor before I even mentioned her calling. She said, Beth her left foot was drawn until about 20 minutes after the seizure and then it relaxed. She said she was about to suggest I take her to the neuro right then. I didn't notice it, I was focused on soothing her. Kimmy  said "I just can't do this anymore" to me yesterday. After an hour or so she calmed down. But she had a good cry once we got alone in the van to head home. You can imagine me. I am just at my wits end.

New Member

Date Joined Dec 2005
Total Posts : 15
   Posted 1/20/2006 1:16 PM (GMT -7)   
I am so sorry to hear that. Are there any other neuro's near you?
It sounds to me like you need to find someone who will work more with you
and the school.
Maybe the stress of school is provoking the sz's?
Wish I could tell you more.
Hang in there.

Beth B. in TN
Regular Member

Date Joined Oct 2005
Total Posts : 83
   Posted 1/20/2006 6:12 PM (GMT -7)   

Thanks for everything guys.


MandiAnn, you so may be right on track with the anxiety. I was thinking that myself. She really notices every little thing at school and does get afraid. There are times when I think she gets to thinking about being alone. Her dad left her at church while he went back home about 5-7 minutes away. She had a seizure. That's when I started thinking about school and anxiety. So that will be one of my questions to the doctor. NOT THAT SHE"S FAKING BUT THAT ANXIETY IS TRIGGERING. I MUST REMAIN CALM. She is getting tired of people who wonder....and are ignorant....I can't blame her.


This forum is the greatest. Jennifer cares and gives us info. MandiAnn takes the time to write wonderful informative and affirming letters. I just wish I could send a real hug your way guys. Thanks Edith if the neuro doesn't have a major change of attitude, I'm gonna move on to a new doc or a new City. Anybody got room? ha ha

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