danielle guerard
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hello everyone
I am a 36 yr old Mother of 7 ( 3 step children,lol) and my youngest son has epilepsy. He was diagnosed at 4 years old. He is now almost 8 years old and has been on Kepra- lamotrigene combo, and more recently clobezam was added to the mix. My question is this, even though Iain has had a rash of more absence seizures his 18 hour VEEG showed no abnormal waves nor did his eeg spike a few months ago when he had that test administered. He has a full time aide at school,and she is a retired health nurse who documents the atypical or absence seizures that he has had- and I even was able to video tape it during a field trip. My problem is that the new Neuro did not even LOOK at the video, the last 2 visits excluding today, the neuro actually had my son who has epilepsy WAIT outside the waiting room, and his visit today, he decided to lower his kepra because perhaps he has grown out of some seizures.
I am not confident about the neurologist because in 4 years I have never encountered one that would make him wait outside, without even seeing him on first visit he remarked maybe he has Dravett syndrome, and now in the course of the same 6 month period, has decided maybe he is growing out of it even though Iain is still presenting with atypical and absence seizures?
Anyhow, he has abnormal eegs, and his last 2 were normal and I was under the impression that a normal EEG does not mean he has grown out of epilepsy??? Helppppppppppppppppp! any advice appreciated!
I am a 36 yr old Mother of 7 ( 3 step children,lol) and my youngest son has epilepsy. He was diagnosed at 4 years old. He is now almost 8 years old and has been on Kepra- lamotrigene combo, and more recently clobezam was added to the mix. My question is this, even though Iain has had a rash of more absence seizures his 18 hour VEEG showed no abnormal waves nor did his eeg spike a few months ago when he had that test administered. He has a full time aide at school,and she is a retired health nurse who documents the atypical or absence seizures that he has had- and I even was able to video tape it during a field trip. My problem is that the new Neuro did not even LOOK at the video, the last 2 visits excluding today, the neuro actually had my son who has epilepsy WAIT outside the waiting room, and his visit today, he decided to lower his kepra because perhaps he has grown out of some seizures.
I am not confident about the neurologist because in 4 years I have never encountered one that would make him wait outside, without even seeing him on first visit he remarked maybe he has Dravett syndrome, and now in the course of the same 6 month period, has decided maybe he is growing out of it even though Iain is still presenting with atypical and absence seizures?
Anyhow, he has abnormal eegs, and his last 2 were normal and I was under the impression that a normal EEG does not mean he has grown out of epilepsy??? Helppppppppppppppppp! any advice appreciated!
