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

[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.

[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.

[Anonymous]

I would get a second opinion before starting medication. Make sure to weigh any side effects of the med with the risk of not treating.

[Anonymous]

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.

[Anonymous]

Anonymous wrote:I would get a second opinion before starting medication. Make sure to weigh any side effects of the med with the risk of not treating.

pp do you have any kids with epilepsy? ( not op)

[Anonymous]

Anonymous wrote: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.

OP here - Thanks for your reply!

How did you discover your son had epilepsy? Was the first sign a seizure?

[Anonymous]

Anonymous wrote:

Anonymous wrote:I would get a second opinion before starting medication. Make sure to weigh any side effects of the med with the risk of not treating.

pp do you have any kids with epilepsy? ( not op)

DP. I’m a parent whose kid had a seizure. I also encourage getting a second opinion! It’s not an emergency.

[Anonymous]

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.

[Anonymous]

Anonymous wrote:I would get a second opinion before starting medication. Make sure to weigh any side effects of the med with the risk of not treating.

OP here - Thanks for your reply!

In a similar vein, previously, I didn't get a second opinion for my other kid's dental work and was kicking my over it because it could have been addressed much faster and with much less collateral damage.

So I have that playing in my head regarding second opinions.

Granted, epilepsy, or at least the potential for epilepsy is obviously much more intense than dental work.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I would get a second opinion before starting medication. Make sure to weigh any side effects of the med with the risk of not treating.

pp do you have any kids with epilepsy? ( not op)

DP. I’m a parent whose kid had a seizure. I also encourage getting a second opinion! It’s not an emergency.

No one really likes medicating their kid. But this isn’t a Tylenol or even Ritalin. This is literally your kid’s brain…..the risk/benefit calculus is always going to favor medication when weighed against even a low possibility for a seizure.

[Anonymous]

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.

OP here - Thanks for your reply!

Actually went to a neurologist because I noticed my kid was exhibiting motor tics never seen or experienced before.

Neurologist recommended a 30 min EEG just to be on the safe side, then a few days later said it was showing abnormalities in kiddo's occipital lobe.

Then they had us do a 72 hour one and I just got the results of those earlier today.

[Anonymous]

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!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I would get a second opinion before starting medication. Make sure to weigh any side effects of the med with the risk of not treating.

pp do you have any kids with epilepsy? ( not op)

DP. I’m a parent whose kid had a seizure. I also encourage getting a second opinion! It’s not an emergency.

No one really likes medicating their kid. But this isn’t a Tylenol or even Ritalin. This is literally your kid’s brain…..the risk/benefit calculus is always going to favor medication when weighed against even a low possibility for a seizure.

OP here - Yes, I think it has just come as a shock to me since we have no family history (mine or my husband's) so it's out of left field for us!

I don't want to medicate for things for little or no reason, but in this case I think it makes sense to given the warning signs of increased electrical activity. Don't want to say no and then something happen when it could have been mitigated or even prevented.

Phew..

[Anonymous]

Anonymous wrote:

Anonymous wrote: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.

OP here - Thanks for your reply!

How did you discover your son had epilepsy? Was the first sign a seizure?

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.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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.

OP here - Thanks for your reply!

How did you discover your son had epilepsy? Was the first sign a seizure?

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.

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!!