Please share your experience with pediatric epilepsy

[Anonymous]

My 8 year old son has seizures. I’ve gone to Children’s National and Hopkins and was underwhelmed maybe I saw the wrong people and it was early one was just 4. It was “take medicine, we can up it if he has more seizures”. Problem is when he gets one we go to the ER because I can’t tell if they are over or not. I am thinking of trying CHOP in Philly or trek it to Boston Children’s. My sister suggested Mayo. There is also Cleveland clinic.

Can anyone share their experiences at these places, local recommendations or support. Thanks

[Anonymous]

We went up to Johns Hopkins. Great ped neurology dept.

[Anonymous]

I’m not really following what your issue is with the two facilities. Our child started having seizures at eight years old and we have been a patient with childrens. We are very happy with their care.

[Anonymous]

What do you mean you can’t tell if the seizure is over? What kind of epilepsy does your child have? Did they give you the emergency nasal spray that you can use at home if the seizures are lasting more than five minutes?

[Anonymous]

Anonymous wrote:We went up to Johns Hopkins. Great ped neurology dept.

Thanks who did you see

[Anonymous]

Anonymous wrote:I’m not really following what your issue is with the two facilities. Our child started having seizures at eight years old and we have been a patient with childrens. We are very happy with their care.

Thanks who did you see?

[Anonymous]

I would go to CHOP. My kid also had an unprovoked seizure and I was surprised how casual they were about it at Children’s. They wanted to send us to an NP to prescribe meds off the bat without any actual discussion with the neurologist. We pushed back and ended up watchful waiting for a while and it never recurred.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I’m not really following what your issue is with the two facilities. Our child started having seizures at eight years old and we have been a patient with childrens. We are very happy with their care.

Thanks who did you see?

I want to start by saying that I think your experience is going to be dependent upon your child’s type of epilepsy, how complicated it is how frequently you need scan/care and how well it’s being managed by medication. If your child’s epilepsy is being managed ok by medication, then you’re really only going to be seeing your doctor every 3 to 6 months.

When we first went to children’s, it was an emergency type situation with MRI overnight EEG, etc. so we saw many doctors. Our initial doctor was an epileptoligist and he was very technical in the way they spoke and interacted with us, which was not exactly what we needed when we were scared parents trying to learn about this new condition impacting our child/family. We ended up seeing Dr. Schreiber for our 3-6 month visits, who works out of both the DC office and Virginia and he is excellent! Very knowledgeable but also has great. “bedside manner“ with kids and parents.

[Anonymous]

My kid started having seizures at 5 months and was ultimately diagnosed with a rare and catastrophic form of epilepsy. We did genetic testing - that should be standard once you’ve had two seizures for unknown reasons. Medication for epilepsy is tricky. There are tons of anti-epileptic medications and finding the right medication for you is a matter of trial and error. The genetic testing results may indicate certain medications are better or worse. In our case, the first medication we tried, while a common first line medication was contraindicated for my kid’s specific genetic mutation - it was actually causing more seizures.

Re providers, we went through many ER hospitalizations for seizures in the early days. I would generally discard any advice you get while in the ER or if admitted to the hospital. You are going to get advice from a lot of inexperienced fellows who think they’re making a difference if they propose a new and different medication to try. We do like individual practitioners - we’ve also see Dr. Schreiber and also think he’s excellent. We worked with Dr Kossoff at Johns Hopkins specifically for keto and love him and his team, but I don’t know if he sees patients who aren’t doing keto. If you ever do pursue keto, absolutely do not do it through Childrens. In general, though there are strong doctors there, but it’s an administrative nightmare. We try to avoid Children’s at all costs.

[Anonymous]

Anonymous wrote:

Anonymous wrote:We went up to Johns Hopkins. Great ped neurology dept.

Thanks who did you see

Kossoff

[Anonymous]

^ not for keto

[Anonymous]

If they’re infrequent it can be really hard to track or pinpoint. Did the meds help?

[Anonymous]

My son had seizures for years; our experience at Children’s was mixed. He’s a complicated case so we ended up at CHOP and have been very happy w team there. They are top notch imo. We see Kessler.

[Anonymous]

Go to chop

[Anonymous]

Op, do you have a specific diagnosis?