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[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.

[b]Kiddo has talked about seeing shapes, different colors, glittery objects, and feeling dizzy.[/b]

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]

These things could actually be seizures (or early stages of seizures). The brain controls everything, and how a seizure manifests can vary significantly. It’s not just convulsions laying on the ground.

My kid has a rare and catastrophic form of epilepsy. In your shoes I’d be asking why trileptal over other anti seizure meds - there are a ton of meds out there - is there a reason to pick this ine. In my experience neurologists may all agree medication is warranted, but may not agree on which medication to try. To the extent that you’re concerned about side effects, you may have room to choose a medication with different/less intense side effects.

It sounds like your kid hasn’t actually been diagnosed with epilepsy, but you may also want to ask about genetic testing. There is a specific (and limited) panel of genes that are tested if epilepsy is in play. Genetic testing should be the norm if epilepsy is a concern because it can impact treatment. It takes a couple of months to get results back so I wouldn’t wait to do it if your neurologist thinks it’s warranted. For my kid’s epilepsy, trileptal is actually contraindicated. We took it while we were waiting for the gentic testing results and it turns out that trileptal causes more seizures in people with my kid’s specific genetic mutation.[/quote]

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