Reply to Neurologist recommending anti-seizure meds with no actual seizure yet?

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[quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous]I would follow the recommendations of the neurologist.

For context, I have a DS with epilepsy. He’s had multiple inpatient EEGs of 24-72 hours that have shown nothing abnormal.

It’s not unusual for the EEGs to not really be definitive. The fact that your EEG showed abnormality and your neuro is recommending meds would be enough for me to go along with  the recommendations for now.

He’s still on 2 daily anti seizure meds. Hasn’t had a seizure in over a year. Our neuro doesn’t want to start weaning off them until he’s been seizure free for longer.

That said, if you’re feeling unsure, get a 2nd opinion. It helps to build confidence in your doctor’s recommendations. We’ve gotten 2nd and 3rd opinions at various junctures in this journey. The recommendations have generally been identical amongst docs.[/quote]

OP here - Thanks for your reply!

How did you discover your son had epilepsy? Was the first sign a seizure?[/quote]

PP here. Yes. First sign was a febrile seizure as a toddler. But the seizures kept coming even after the fever subsided.

I know it really sucks :( and I was so upset to medicate. We started with Keppra, which is known to sometimes cause rage, and toddlers can be ragey as it is! For years I wondered if DS’ tantrums were because of the Keppra or because of toddlerhood (and later, because of speech delay and frustration).

In retrospect, I wish I had been more trusting of the docs. I was reluctant to medicate and we saw not one, not two, but FOUR different neurologists/epileptologists and all of their tangible recommendations have been literally identical (and we even didn’t tell them we were getting 2nd opinions-just went in like we were new patients without sharing the prior recommendations). They still all said the same things.

I tend to hesitate to medicate in general but had to learn that this is a different ball game than other medical issues.

Hope this ends up somehow not being a big deal for your kiddo and you’re able to do the meds for a short period and then be done with them.

My kid is on 2 seizure meds, a sleep med, and an ADHD med :( it makes me sad since I normally would hesitate to even do an antibiotic. But I’m trying to protect his brain and it is what it is for now. I hope there comes a day when he’s on fewer meds.[/quote]

OP here - I appreciate you taking time to respond - my heart goes out to you and your son. We are only just beginning our journey here, and I, too, hope that it won't progress any further.

I think it makes sense to start medication and then get the results of the EEG scans and see what another neurologist recommends. If starting the medication, then getting another opinion can't hurt.

Wishing you all the best!![/quote]

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