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[quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous]Feeling a bit lost.. anyone here with kids who have epilepsy (or you yourself)?

Recently got off the phone with my kid's neurologist. Kiddo had a 72 hour EEG that is showing increased electrical activity.

No actual seizure has occurred per the EEG, but there is increased activity, especially during nighttime/sleep.

Kiddo has talked about seeing shapes, different colors, glittery objects, and feeling dizzy.

Neurologist is recommending anti-seizure medication because they're concerned that if we leave it to watchful waiting, that more areas of the brain could develop abnormal activity which could lead to a more involved, basically scary seizure, especially if it occurs at night and no one is awake to respond.

It all feels like things are happening so fast. We're a family who doesn't immediately jump to medications (even for myself, I hate taking Tylenol as frequently as I do).

Should we seek a second opinion? Or go with starting medication?

We have zero familiarity with epilepsy so we're feeling overwhelmed.[/quote]

I have two kids with Epilepsy but we only discovered it after they had seizures.  What made you see a neurologist?  Personally because it is so difficult to see a second doctor that I would start the medication.    It isn't a question of "jumping to medication" for a headache because this is more serious. And I too don't take it right away.  But, I would not mess around with my kid.  After you start the medication you can get a second opinion but, this way your kid is protected.[/quote]

Exactly. Start the meds. Seek a 2nd opinion in parallel.

My kid has a rare form of epilepsy and I’m in Facebook and support groups for it. A lot of these kids have severe epilepsy and are on tons of meds. And even they sometimes have EEGs come back completely normal. The fact that stuff was showing up on the EEG and your neurologist recommends medication is enough to make it make sense to follow the recommendations.

Also, and I hesitate greatly to say this, but…..google SUDEP. I would follow the recommendations of your neurologist because of SUDEP.[/quote]

OP here - Thanks for replying!

I think what you're saying makes sense - start the medication (Trileptal is what is being prescribed) and then seek another opinion.

This was our first encounter with an EEG, so I honestly didn't know that more often than not, they come back as showing normal.

However, wouldn't they be normal if the patient is medicated for it?

I'm honestly not trying to sound combative - really just trying to learn and understand![/quote]

Pp here. I see what you’re saying about the EEGs being normal if the child is medicated. That’s a good question and I’ll be curious if anyone has insight.

I know there are different procedures around EEGs and depending on the kid they sometimes have you NOT give meds before the EEG, and they also do things like have you sleep deprive your child beforehand or they use lights too to try and provoke a seizure.  Usually people are really hoping for the EEG to catch the seizure activity so we can get that data. But you’re right-kids who have seizures are usually medicated and so if their EEGs look normal, is that because they are medicated (even if they skip the dose the day of, presumably there’s a cumulative impact) or is because it’s so common for even kids with severe epilepsy to have normal EEGs.

Hopefully you can find a neurologist willing to have these conversations with you. I have found pediatric neurologists on the whole to be pretty wonderful people who are willing to be collaborative about care. If that’s not the vibe you’re getting from your current neurologist, then keep looking. We had a great experience with Dr. Helbig at CHOP but he is a specialist in our rare epilepsy type so may not be the right fit for you.[/quote]

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