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

[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.

OP here - I appreciate your reply. I'm glad I reached out here because all the information and experiences people are providing is exactly the kind of reality check I need.

[Anonymous]

Anonymous wrote: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.

OP here - Appreciate the recommendation!

[Anonymous]

Anonymous wrote: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.

OP here - How terribly tragic 😭

[Anonymous]

Anonymous wrote: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.

OP here - Wow, this is crazy. It really makes me go back and try and analyze things I may have missed before.

I hope I haven't already failed my kid because I didn't recognize the signs/symptoms due to being unfamiliar with seizures and epilepsy 😭

[Anonymous]

Anonymous wrote: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.

OP here - Neurologist prescribed Trileptal suspension.

[Anonymous]

Anonymous wrote: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.

+1
I was just going to post that we love dr Andrews at Georgetown. I wasn’t aware he’s switching - I hope someone posts here when his new position is confirmed.
My dd was suspected to have absence seizures where she just stared into space and couldn’t even hear you for a few seconds. An eeg confirmed abnormal activity. Fortunately an mri was normal, but the eeg was abnormal enough that dr Andrews said without a doubt go on a med. We got a second opinion who also said the same thing. Dd has a speech delay and some characteristics of autism, so she lacks the verbal ability to say anything about the seizures or how she feels on the med, but she really seems to have stopped having them. We had a few blips where she had a growth spurt and needed a higher dose but other than that, it’s been easy. Read up on SUDEP and to me it seemed like a no brainer to start a relatively safe med. Good luck.

[Anonymous]

OP, you haven't failed your kid! Mine was on Trileptal and it did a great job of controlling her seizures. Her eeg looked better, too, although it never was completely normal. I urge you to do some of your own research. The Epilepsy Foundation is a good start. And join FB groups for parents with kids with epilepsy/seizure disorders. You will learn a lot. Good luck.

[Anonymous]

Anonymous wrote:OP, you haven't failed your kid! Mine was on Trileptal and it did a great job of controlling her seizures. Her eeg looked better, too, although it never was completely normal. I urge you to do some of your own research. The Epilepsy Foundation is a good start. And join FB groups for parents with kids with epilepsy/seizure disorders. You will learn a lot. Good luck.

OP here - Thank you!

I was able to get the reports from both the 30 min and 72 hour EEGs so I looked over the summary of results. Over the phone yesterday I didn't have anything on front of me so seeing the reports have helped me to understand how important going on the medication is to hopefully try and mitigate future spikes.

I'm going to the pharmacy today to pick up the prescription and then start it tomorrow since it's twice a day.

Really hoping that we don't experience any bad side effects!! 🙏🏼

[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.

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.

[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.

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.

OP here - Neurologist recommended Trileptal first because she said that is what they normally go to for focal seizures, rather than generalized.

We started our first dose today and will give the second one in a few hours 🤞🏼🤞🏼

Wishing you all the best!

[Anonymous]

I have epilepsy and didn't have my first grand mal seizure until I was 23. BUT when I had one, after speaking to a neurologist it turns out I had been having petit mal seizures my whole life and didn't know what was going on. I'm 46 now and have been seizure free for 9 years but they don't want me off meds.

I would seek a second opinion. I'm lucky that I don't have "keppra rage" but side effects can be rough for some. It can't hurt.

[Anonymous]

We went to Dr. Schreiber at children’s at the Fairfax location for our child with benign Rolandic epilepsy. Our child started having some weird symptoms during sleep. They said their face would feel numb or things would look funny or they couldn’t “talk”. Then one night we happened to be sleeping in the same room, and my child had a seizure in their sleep. At the hospital we leaned They also were having almost constant activity like you’re describing and eventually was put on Keppra. They may mention ESES, which is a condition in which your child’s brain is spiking so much that they’re not able to develop as well academically, physically, etc. because their brain literally has no time to rest. That’s an over simplified explanation, but the Keppra helps with this kind of epilepsy. Our neurologist had us do a baseline neurological evaluation so we can monitor if anything regressed with regard to their academics or physical Behavior, etc.

we were on Keppra for about four years and happy to say with our child’s form of epilepsy, which only happened in their sleep, they grew out of it by puberty. SUDEP is not something to mess around with. (this is how Cameron Boyce, the Disney actor from descendants died in his sleep). I recommend you looking at monitors for at night , so you can pick up on any seizures during sleep. The one we used is called SAMI. Gave us peace of mind!

[Anonymous]

^ also want to add that we had no family history of seizures or epilepsy, but we do have family history of migraines, and they are somewhat related. In fact, our kids migraine stopped, while we were on Keppra, but have unfortunately come back along with motion sickness, which was also suppressed during Keppra.

[Anonymous]

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.

[Anonymous]

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.