Dear OP, just sending you good wishes as you sort through so many stressful decisions. I was diagnosed with epilepsy when I was 16 and was on meds for about 8 years. Then the Dr said I could go off the meds and I’ve been fine since (now 50+!). Just sharing this to reassure you that things can work out fine. I didn’t really like taking the meds but it was worth it bc, as others have mentioned, it trains your brain to not have a seizure.

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.

Anonymous wrote:My kid has ESES. He did brain MRI scan, no damage and he has not had one seizure. He has nonstop brain activities all night long, and he has done 1 hour EEG & 12 hours EEG showing same abormal nonstop activities. He has diagnosis of anxiety, autism level 1 and adhd, unmedicated for anything yet. I always wonder if those are ESES triggered behavior. He had neuropsych evaluation showing 130 IQ with lack of attention. He does well in public school mainstream academically, does okay in rec. sports (poor in sports), and he has a few casual random friends.

We got ESES diagnosis, and got 2nd opinion confirming ESES. Because there have been "considered not much impact or delay or regression" on him, we have been holding off on trying medication for few years. We fpund out he had abnormal EEG when he was 2/3, covid hit, and he is 7 now still doing okay. We consider to put him on medication. Some pp mentions keppra, what is the side effects? We were recommended low dose steroid over 2-3 months including weaning time to kill the ESES in one strike (from children hospital). What do you think of steroid? We were told that we should expect to see great improvement or much differences if he is trying medication in his case. Any suggestion?

OP here - Sounds similar to our story, although we haven't gotten a formal diagnosis of an epileptic condition, just focal seizures.

Given the people who have commented here, and others I have seen elsewhere, it sounds like it's not a matter of "if" someone with abnormal brain activity will have a seizure, it's "when."

That is why we decided to go with the medicine because I wouldn't ever forgive myself about something happening before beginning medicine, especially under the auspices that the medicine could mitigate further activity.

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.

OP, this is called "kindling." Abnormal pathways being excited (even if not tipping over to a full seizure) makes them more prone to the same behavior in the future. It's kind of like the electrical version of wearing ruts deeper in a mushy rod every time you fall into the same grooves

The most patient friendly cite I can find is Wikipedia: https://en.wikipedia.org/wiki/Kindling_model_of_epilepsy

OP here - I appreciate your reply.

That is basically what the neurologist said about the pathways.

Just hoping that the medicine prescribed will be effective for us 🤞🏼🤞🏼

Anonymous wrote:My kid has ESES. He did brain MRI scan, no damage and he has not had one seizure. He has nonstop brain activities all night long, and he has done 1 hour EEG & 12 hours EEG showing same abormal nonstop activities. He has diagnosis of anxiety, autism level 1 and adhd, unmedicated for anything yet. I always wonder if those are ESES triggered behavior. He had neuropsych evaluation showing 130 IQ with lack of attention. He does well in public school mainstream academically, does okay in rec. sports (poor in sports), and he has a few casual random friends.

We got ESES diagnosis, and got 2nd opinion confirming ESES. Because there have been "considered not much impact or delay or regression" on him, we have been holding off on trying medication for few years. We fpund out he had abnormal EEG when he was 2/3, covid hit, and he is 7 now still doing okay. We consider to put him on medication. Some pp mentions keppra, what is the side effects? We were recommended low dose steroid over 2-3 months including weaning time to kill the ESES in one strike (from children hospital). What do you think of steroid? We were told that we should expect to see great improvement or much differences if he is trying medication in his case. Any suggestion?

Pp here. He sleeps through night for 10 hours. He is smart, active and happy. We found out he has ESES by luck because he grind his teeth at age 2, so went thru sleep study.

My kid has ESES. He did brain MRI scan, no damage and he has not had one seizure. He has nonstop brain activities all night long, and he has done 1 hour EEG & 12 hours EEG showing same abormal nonstop activities. He has diagnosis of anxiety, autism level 1 and adhd, unmedicated for anything yet. I always wonder if those are ESES triggered behavior. He had neuropsych evaluation showing 130 IQ with lack of attention. He does well in public school mainstream academically, does okay in rec. sports (poor in sports), and he has a few casual random friends.

We got ESES diagnosis, and got 2nd opinion confirming ESES. Because there have been "considered not much impact or delay or regression" on him, we have been holding off on trying medication for few years. We fpund out he had abnormal EEG when he was 2/3, covid hit, and he is 7 now still doing okay. We consider to put him on medication. Some pp mentions keppra, what is the side effects? We were recommended low dose steroid over 2-3 months including weaning time to kill the ESES in one strike (from children hospital). What do you think of steroid? We were told that we should expect to see great improvement or much differences if he is trying medication in his case. Any suggestion?

""muddy road, not mushy rod

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.

OP, this is called "kindling." Abnormal pathways being excited (even if not tipping over to a full seizure) makes them more prone to the same behavior in the future. It's kind of like the electrical version of wearing ruts deeper in a mushy rod every time you fall into the same grooves

The most patient friendly cite I can find is Wikipedia: https://en.wikipedia.org/wiki/Kindling_model_of_epilepsy

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.

An EEG is a snapshot. Not unusual for it to not show seizure activity.

We have two family members (one young and one old) who had zero side effects with Keppra. So not everyone gets the "rage".

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:For anyone reading who is worried about “keppra rage”, my son went on keppra aged 5 and we were warned about the side effects but he had had two prolonged absence seizures (minutes long so kind of unusual presentation) so we decided meds were appropriate.

It absolutely changed his personality for the first month. He was over sensitive, angry, cried at the drop of a hat. It was so bad we made an appointment with the neurologist to discuss weaning him off the medication but then suddenly! He was back to his normal sweet self! So my advice is to allow for an adjustment period before panicking.

Also add b6, rx. It works wonders.

+1 Our Neuro suggested this from the get go. The benefits of Keppra WAY outweighed the side effects. We were told that the "rage" is more common in kids who are already dealing with those kind of issues. It doesn't come out of no where, its an exaggerated behavior.

That’s not true. My dad experienced horrific anxiety and anger on it and had no such issues. These are brain medications and they impact the brain often causing anxiety etc

Agree with this. I am the PP who advised to allow for a waiting period for the side effects, and for my son it wasn’t exaggerated behavior- the behavior DID come out of nowhere. It completely changed his personality, but luckily only for about a month and then he seemed to go back to normal.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:For anyone reading who is worried about “keppra rage”, my son went on keppra aged 5 and we were warned about the side effects but he had had two prolonged absence seizures (minutes long so kind of unusual presentation) so we decided meds were appropriate.

It absolutely changed his personality for the first month. He was over sensitive, angry, cried at the drop of a hat. It was so bad we made an appointment with the neurologist to discuss weaning him off the medication but then suddenly! He was back to his normal sweet self! So my advice is to allow for an adjustment period before panicking.

Also add b6, rx. It works wonders.

+1 Our Neuro suggested this from the get go. The benefits of Keppra WAY outweighed the side effects. We were told that the "rage" is more common in kids who are already dealing with those kind of issues. It doesn't come out of no where, its an exaggerated behavior.

That’s not true. My dad experienced horrific anxiety and anger on it and had no such issues. These are brain medications and they impact the brain often causing anxiety etc

Anonymous wrote:

Anonymous wrote:For anyone reading who is worried about “keppra rage”, my son went on keppra aged 5 and we were warned about the side effects but he had had two prolonged absence seizures (minutes long so kind of unusual presentation) so we decided meds were appropriate.

It absolutely changed his personality for the first month. He was over sensitive, angry, cried at the drop of a hat. It was so bad we made an appointment with the neurologist to discuss weaning him off the medication but then suddenly! He was back to his normal sweet self! So my advice is to allow for an adjustment period before panicking.

Also add b6, rx. It works wonders.

+1 Our Neuro suggested this from the get go. The benefits of Keppra WAY outweighed the side effects. We were told that the "rage" is more common in kids who are already dealing with those kind of issues. It doesn't come out of no where, its an exaggerated behavior.

Anonymous wrote:Who is the neurologist? We weren’t impressed with Georgetown so I’d get a second opinion if it’s them.

Did the neurologist give a diagnosis?

My kid almost never had an abnormal EEG - with or without meds. So the fact that they do see something seems significant. I’d push to get a diagnosis from them and/or second opinion.

Did you see Dr. Andrews? The rest of the team isn’t great but he is stellar. The EEG isn’t relevant for a lot of seizure disorders but is for some. Neurology is often a research art. Many people have spikes but never seize. It may just be an abnormal brain. They still may benefit from meds. Inverse is true also. Many people seize and it’s not captured on an eeg.

Who is the neurologist? We weren’t impressed with Georgetown so I’d get a second opinion if it’s them.

Did the neurologist give a diagnosis?

My kid almost never had an abnormal EEG - with or without meds. So the fact that they do see something seems significant. I’d push to get a diagnosis from them and/or second opinion.