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

[Anonymous]

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!

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.

[Anonymous]

Our daughter was having focal awareness seizures aka partial seizures. Basically noticed her staring out into space and talking about random stuff. We ignored at first because we just thought she was tired. Did not present like a typical seizure. They started getting more frequent and noticed her smacking her lips. Google search indicated seizure. Made an appt with children’s hospital, dr. Gaillard ( he is awesome but we had to wait months). He did have dd do eeg which showed brain activity and she went in meds which stopped them so far almost a year. She had an mri done a couple months ago which showed scar tissue causing the seizures. No idea how the scarring happened since she never had a significant head injury. We can consider laser surgery down the road to potentially treat it but for now she is doing well in the medications. I thought about getting a 2nd opinion but the treatment is working so no reason to doubt original diagnosis. After seeing a video of partial seizures I knew that is what my daughter had. I do think it is odd that you are going on meds before eeg. I would question that.

[Anonymous]

^^ also… my dd could detect when the seizures were coming and in some cases, could stop them. She is on the generic trileptal. Did they suggest an mri?

[Anonymous]

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!

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.

OP here - I probably would have thought of that question and asked it to the neurlogist had I not been stunned, I think!

Glad you have a supportive team for your child!

[Anonymous]

Anonymous wrote:Our daughter was having focal awareness seizures aka partial seizures. Basically noticed her staring out into space and talking about random stuff. We ignored at first because we just thought she was tired. Did not present like a typical seizure. They started getting more frequent and noticed her smacking her lips. Google search indicated seizure. Made an appt with children’s hospital, dr. Gaillard ( he is awesome but we had to wait months). He did have dd do eeg which showed brain activity and she went in meds which stopped them so far almost a year. She had an mri done a couple months ago which showed scar tissue causing the seizures. No idea how the scarring happened since she never had a significant head injury. We can consider laser surgery down the road to potentially treat it but for now she is doing well in the medications. I thought about getting a 2nd opinion but the treatment is working so no reason to doubt original diagnosis. After seeing a video of partial seizures I knew that is what my daughter had. I do think it is odd that you are going on meds before eeg. I would question that.

OP here - Thanks for your reply!

We did have the 72 hour EEG which showed the increased electrical activity. That was after an initial 30 minute EEG which showed the same abnormalities. Neurologist wants us to go forward with the MRI we have scheduled, but did say that it could come back as normal, in spite of whatever is going on.

Wishing you all the best!

[Anonymous]

My son and father have epilepsy. So, the issue is your child is going to have a seizure. A high level of activity means that under the right conditions the spikes will coalesce and form a seizure. You may not see it. It could be while he is sleeping. SUDEP is a real thing. The idea of the medication for epilepsy is that the brain waves are traveling on the wrong track. You need to retrain them. If you can stop them traveling down that track they often forget about it. It’s training the brain not to seize.

In terms of development my son had just a ton of activity with few seizure for years. He didn’t make significant progress with reading or behavior until we finally stopped the spiking. Look into ESES.

[Anonymous]

EEGS often show some spikes even when medicated. Depends on the seizure disorder.

[Anonymous]

We see Dr. Andrews - he is an epileptologist. He was a Georgetown but is switching now. I believe to children’s but he wasn’t allowed to say for sure. He is incredible. Highly, highly recommend.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Our daughter was having focal awareness seizures aka partial seizures. Basically noticed her staring out into space and talking about random stuff. We ignored at first because we just thought she was tired. Did not present like a typical seizure. They started getting more frequent and noticed her smacking her lips. Google search indicated seizure. Made an appt with children’s hospital, dr. Gaillard ( he is awesome but we had to wait months). He did have dd do eeg which showed brain activity and she went in meds which stopped them so far almost a year. She had an mri done a couple months ago which showed scar tissue causing the seizures. No idea how the scarring happened since she never had a significant head injury. We can consider laser surgery down the road to potentially treat it but for now she is doing well in the medications. I thought about getting a 2nd opinion but the treatment is working so no reason to doubt original diagnosis. After seeing a video of partial seizures I knew that is what my daughter had. I do think it is odd that you are going on meds before eeg. I would question that.

OP here - Thanks for your reply!

We did have the 72 hour EEG which showed the increased electrical activity. That was after an initial 30 minute EEG which showed the same abnormalities. Neurologist wants us to go forward with the MRI we have scheduled, but did say that it could come back as normal, in spite of whatever is going on.

Wishing you all the best!

If my memory is right, I believe the MRI is to see if there is a structural reason for the seizures. They just want to rule it out as a cause. I remember my son having a MRI done and it coming back normal despite abnormal EEG (our EEG actually recorded a seizure in his sleep I would have never known about).

[Anonymous]

I discovered my child’s epilepsy when he had a status epilepticus event. He was fine going to bed, woke up early in the morning, went back to sleep and started seizing. Luckily we happened to be in the room with him.

His regular profile matches your child- increased electrical activity during sleep. We just didn’t realize his risk before the actual event. So I’m biased, but I would follow the neurologist rec.

[Anonymous]

Anonymous wrote:My son and father have epilepsy. So, the issue is your child is going to have a seizure. A high level of activity means that under the right conditions the spikes will coalesce and form a seizure. You may not see it. It could be while he is sleeping. SUDEP is a real thing. The idea of the medication for epilepsy is that the brain waves are traveling on the wrong track. You need to retrain them. If you can stop them traveling down that track they often forget about it. It’s training the brain not to seize.

In terms of development my son had just a ton of activity with few seizure for years. He didn’t make significant progress with reading or behavior until we finally stopped the spiking. Look into ESES.

+1

[Anonymous]

I literally know a neighbor boy (and family friend) who had a seizure while off the meds, hit his head, and sadly died at age 21.

[Anonymous]

To give those of you with young kids hope / my son was having spikes almost every other second in his sleep from 4-11.
His behavior and learning suffered greatly. At 12, we have added amantadine. We just got an almost normal eeg. Hopkins is using this med for refractory epilepsies. It also has cognitive improvement effects and may help significantly with adhd. It’s been a huge game changer for us. My kid could not behave when he had a ton of seizure activity. He could not learn. He did not get sleep. You have to medicate your kid if he is having electrical charges all night long. He is being majorly impacted by it, I assure you. My son had one seizure in his sleep when he had not had one for a few years and it was terrifying.

Op, if you see activity on the eeg like you did, no neuro is going to give you a second opinion. SUDEP is terrifying and constant brain spikes while sleeping is always going to mean meds. It’s not if but when they will seize. A cold, a fever, a late night, too many screens because it’s coming from the occipital lobe. Been there.

[Anonymous]

What med? I believe some of the anti-seizure meds are also used for migraines and even anxiety. So, I would not panic that it is some overly powerful med that will have major side-effects.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Our daughter was having focal awareness seizures aka partial seizures. Basically noticed her staring out into space and talking about random stuff. We ignored at first because we just thought she was tired. Did not present like a typical seizure. They started getting more frequent and noticed her smacking her lips. Google search indicated seizure. Made an appt with children’s hospital, dr. Gaillard ( he is awesome but we had to wait months). He did have dd do eeg which showed brain activity and she went in meds which stopped them so far almost a year. She had an mri done a couple months ago which showed scar tissue causing the seizures. No idea how the scarring happened since she never had a significant head injury. We can consider laser surgery down the road to potentially treat it but for now she is doing well in the medications. I thought about getting a 2nd opinion but the treatment is working so no reason to doubt original diagnosis. After seeing a video of partial seizures I knew that is what my daughter had. I do think it is odd that you are going on meds before eeg. I would question that.

OP here - Thanks for your reply!

We did have the 72 hour EEG which showed the increased electrical activity. That was after an initial 30 minute EEG which showed the same abnormalities. Neurologist wants us to go forward with the MRI we have scheduled, but did say that it could come back as normal, in spite of whatever is going on.

Wishing you all the best!

If my memory is right, I believe the MRI is to see if there is a structural reason for the seizures. They just want to rule it out as a cause. I remember my son having a MRI done and it coming back normal despite abnormal EEG (our EEG actually recorded a seizure in his sleep I would have never known about).

OP here - Yes, that is how the neurologist explained the need for an MRI. Said may come back normal or may come back as showing scar tissue.