Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote: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.
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.
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.
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!
OP, I am a longtime mom of a child with a seizure disorder. I understand this is all more than a little overwhelming. I STRONGLY echo the other posters who are telling you to follow the doctor's advice and put your child on medication, as recommended. Then you can seek a second opinion later WHILE your child is already on medication. There are so many reasons why you do not want to go against medical advice with this serious of a condition. For the second opinion, look for a pediatric neurologist who specializes in seizure disorders.
I'm not sure what you mean by EEGs more often than not come back showing normal. Of course they do for the majority of people. But your child has had two EEGs and they were both abnormal. Also it's not at all unusual for a child with a seizure disorder not to have a seizure during the EEG. The EEGs are snapshots in time.They just show that your child did not have a seizure during the EEG, it does not definitively show that your child has not had a seizure at another time. What did the neurologist say about your child's reports of what they saw/how they feel? Are those consistent with seizure activity? Has the neurologist provided you with a specific diagnosis based on the EEG activity?
As to whether the EEG would be normal if the patient is medicated for it - well, that depends. My child has been medicated for YEARS, and has had periodic EEGs over the years what were abnormal, and them more recently normal EEGs while on meds (but still abnormal when we trialed off of meds). You can achieve seizure control without a fully normal EEG.
In addition to medication, there are other precautions you should take for a child with epilepsy. No unsupervised baths or swimming, no sleeping on top bunk, alert anyone who watches him as to plan of care if he has a seizure, have a health plan for school, maybe no bike riding.
It's a lot to get your head around. epilepsy.com is a good resource. If you post your location, maybe others can suggest local groups.
OP here - I really appreciate your thoughtful and thorough message!
The EEGs coming back more often than not as normal was in response to someone else saying that, and it was just me saying "oh I didn't know that."
No official diagnosis of an epileptic condition, just that kiddo is probably having focal seizures to some extent.
We are on day 3 of Trileptal but are supposed to incrementally increase the dose over time.
Kiddo just had a 30 minute meltdown with crying which has never happened before (well, not nearly that long, I should say).
I had to tell myself a few times that it could be the medicine given it is literally supposed to change the way your brain behaves. Hopefully emotional incidents will be limited 😬
You aren't the first person to mention how your child has had normal EEGs but yet still has epilepsy, and the fact that my kid has had two and they've both come back as abnormal.
I've been trying not to stress, even though it's hard.
We've moved around a lot in the last few years and have homeschooled. We are planning to enter school in the Fall for the first time, and now I'm worried that this may all derail it.
It's already going to be a huge adjustment and change to the usual, so my mind is just wandering with the "what ifs."
I appreciate your reply!!
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