Complex Partial Seizures

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How do you parents with kids with partial seizures cope with the medical system? My daughter who suffers from complex partial seizures had a seizure this morning at the school bus stop. The ambulance took her to the ER. The ER told me they believe she is faking! She has only had about six seizures since August, 2004 but they all take the same form. Does anyone else get as frustrated as I feel right now? My daughter is 15.

Comments

RE: Complex Partial Seizures

Submitted by crysta95 on Mon, 2005-03-21 - 16:25

Yes. Very frustrated!We have always used a family practice doctor. He takes care of all of us! When Jordan had her first myoclonc at school, he did refer her to a wonderful neuro. And he scheduled her eeg. She was diagnosed with Primary Generalized Epilepsy, Myoclonics, and Absence. Then in January, Jordan was sick and I had to take her to see her regular doc. It didn't even hit me until we left, what he said. At one point he made the comment that HE just wasn't convinced that she was having seizures! I was absolutely fuming, after the fact. When he can sit and hold my baby for 15 minutes, while she has one myoclonic after the other, then he can talk. He's not a neuro, and apparently has not had to deal with it firsthand!Last week, she had to go back to see him again. I think he was convinced then. She was sick, and had a terrible week with the myoclonics. This time he got to see them firsthand. Of course, nothing was said, though. So I'm not sure we're going to continue to see him. I hate to change docs on my girls, as this is the only doc they have ever seen. Jordan's had a tough enough time, with seeing her 'new neuro' as she says, let alone another new doctor!Crystal

RE: RE: Complex Partial Seizures

Submitted by 38benny on Tue, 2005-03-22 - 11:40

I read all of the posts above and thought "YEAP BEEN THERE." Before being diagnosed my school nurse told me to quit lying to get out of class with "ridiculous stories". Then while being tested by one neuro for the VNS he told me that I wasn't having seizures at all - I was just crazy and depressed - although 10 other neuros told me I had 3 different types of seizures. I stuck with the diagnoses of the 10. Then this year after having cluster seizures for two weeks my doc wanted me in the hospital for a week to test me. I told him it was probably just my normal woman's monthly problems as usual -- but he didn't believe me (it was) I had no problems in the hospital and the neuro specialist there didn't believe I was having seizures at all. Probably because seizures don't happen on demand huh? "So what" I thought "they put the VNS in me for good measure?" I think not.

Basically you've gotta trust yourself... I knew for 17 years that something wasn't right even though others didn't believe me. If you know it - thats all that counts.

JoAnne

I read all of the posts above and thought "YEAP BEEN THERE." Before being diagnosed my school nurse told me to quit lying to get out of class with "ridiculous stories". Then while being tested by one neuro for the VNS he told me that I wasn't having seizures at all - I was just crazy and depressed - although 10 other neuros told me I had 3 different types of seizures. I stuck with the diagnoses of the 10. Then this year after having cluster seizures for two weeks my doc wanted me in the hospital for a week to test me. I told him it was probably just my normal woman's monthly problems as usual -- but he didn't believe me (it was) I had no problems in the hospital and the neuro specialist there didn't believe I was having seizures at all. Probably because seizures don't happen on demand huh? "So what" I thought "they put the VNS in me for good measure?" I think not.