Weaning from meds question
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UPDATED: Wed, 08/27/2008 - 2:06pm
reb1025
questioning doctors recommendations
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My son starting having partial focal seizures when he was 7. He started taking trileptal 2 months after his last seizure (June 05) and is taking 300mg a day (we were very reluctant to begin with). Thank god he hasn't had a seizure since April 05. When medication was first suggested to us we were told he'd be on it for 2 yrs and if no seizures occured he could come off of it. 2 yrs came and he had an in-office EEG & a 24hr EEG. The doctor told us the 24hr was normal but the in-office wasn't so he told us to stay with it for another 6 months. It's now been another year and my son's been through another round of tests. The dr's office called and said the tests came back normal...yeah....but when I asked when we can start weaning him off the meds they said they needed to talk to the dr and get back to us. They just left me a voice mail saying the in-office EEG was normal but the 24hr one wasn't so the dr wants him to stay on the meds and we'll see you in 6 months.
Now my husband and I aren't great believers in doctors or medication to begin with so we'd like some of your thoughts. We're planning on weaning him off ourselves because we're not comfortable with him going the puberty (he just turned 11 in JUNE) and all those changes with a medication that is effecting his brain (for 3+ years) which we believe he no longer needs. Can anyone gives us suggestions of weaning or not???
Thanks Robin
By reb1025 at Wed, 08/27/2008 - 2:06pm | 28 views | 2 comments
Topic: Parent Group
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In all honesty, you need to sit down face to face with this neurologist and speak to him. I'm sorry on the behalf of the medical profession that you have not had any clearer answers. First of all, it is quite often the case that patients are taken off medication once they have been seizure free for a period of time, but there may be a good reason why the doctor feels that your child should remain on medication on the basis of the EEG.
It does seem a bit confusing I must admit, but if the EEG still shows epileptiform activity, or areas which show focal abnormality that could cause the partial seizures, then he/she may be concerned that removing the medication may cause the seizures to recur, or worse- recur and then then become difficult to control when re-introducing the medication. If he is seizure free on medication, then there is no urgency to remove the medication.
I would advise against weaning the medication. If you cannot get this neurologist to see you, and explain his basis for staying on the medication, then I suggest you seek the opinion of another neurologist. It sounds like you have been speaking to him through a go-between which is never good and a bit naughty. EEGs are hit and miss anyway, people can continue to have seizures and never have an abnormal EEG. Taking medication is never nice, but the effects of having seizures are not fantastic either.
P.s. I am a doctor, with partial and complex partial epilepsy - but by no means am I a neurologist
I am so happy to hear that your son has been seizure free for over three years...that is really wonderful! I would not take him off medication without a drs. approval. First of all, if he is entering puberty, he could be at risk for having a seizure because of hormonal changes. Secondly, it sounds as if his EEG's are not completely clear of seizure activity. Talk to his doctor face to face, and tell him your concerns. Of course no seizures and being medication-free is always the optimal situation, but obviously the dr. feels uncomfortable removing him from medication at this point, and if your son has remained seizure free, I would be hesitant to change anything. Good luck, and let us know how things turn out.