I am new

[danielle guerard]

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 video EEG 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 neurologist did not even LOOK at the video, the last 2 visits excluding today, the neurologist 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!

[epileric]

I've had numerous neurologists, especially when I was younger & didn't know how to ask questions or stand up for myself.

Many just don't know how to communicate. Have you asked the neurologist why your son was made to wait outside since he is the patient? If you don't get a good answer I would change neurologists but I would ask first.

[danielle guerard]

Thank you for your thoughts, I never even asked why he was not supposed to be in the first 2, the first time it was because he was taking history, my bigger concern is that in a space of 6 months the guy has gone fro wildly guessing Dravett's syndrome and then to say maybe he is growing out of them because the EEG came back normal. From all the hours of medical I have poured through I was under the impression that a normal EEG in a person who has epilepsy is typical as unless you ae actually seizing then the EEG IS normal?

[epileric]

no, an EEG can show abnormal firing even if the patient doesn't have a seizure.

However, even when having a seizure, if it stays local in a deeper part of the brain & doesn't spread then it might not show on the EEG.

[danielle guerard]

I see you are also in Ontario, thank you for your reply

[epileric]

you're very welcome

where in ON are you (if you don't mind me asking)

[danielle guerard]

Maple, just north of TO

[epileric]

cool, there's probably a lot of neurologists that cross pollinate b/w our neighborhoods.

[danielle guerard]

Likely, I am very frustrated with the new neurologist. I will try his suggestion and if he gets worse I will request a new one for my son

[epileric]

That sounds good to me.

I would also suggest trying to ask questions. Occasionally they do something good that we don't understand so always ask. Besides, how they answer (as well as what) will tell you a lot about the neurologist him/herself. I've learned that if they try to avoid being straightforward with me to one question they probably will do the same to all my questions and I start looking for a new neurologist.

[Endless]

Hi, Danielle,

Welcome to the forum!

You are right. A negative EEG doesn't mean your son does not have epilepsy. It may be negative because they are happening too deep in the brain, or because the seizures haven't made permanant changes to his brain yet and he isn't having a seizure at the time of the EEG.

Your neurologist sounds like he isn't treating you or your son with respect. I think respect is the foundation of any good relationship - including one with your doctor. AND this neurologist is intentionally ignoring important documentation and evidence related to your son's health. I wouldn't wait to get a new neurologist - I'd do it right away. How long is the wait for a new neurologist where you live? Here in the U.S. it takes 2-4 months to get in to see a new neurologist because their calandars are already booked out that far. For that reason I keep the old neurologist until I have actually seen the new one and feel he's a good fit.

You are a great mom, doing all the right things. Big hugs to you and your son.