Best Epilepsy Center

[Anonymous]

Hello. My 5 yo recently had three seizures. Initial EEG and symptoms point to left temporal lobe epilepsy. Does anyone have any recs on the best epilepsy center or doctors to consider and/or whether this is something to travel for? I've seen the rankings, but would love any first hand experience, especially comparing the DC-area Level IV epilepsy centers or comparing DC centers with some of the top-ranked locations, like CHOP or Boston. Thank you.

[Anonymous]

Boston Children's

[Anonymous]

Hopkins used to have a fantastic pediatric neurology and epilepsy department though I haven’t kept up with staffing changes.

[Anonymous]

Anonymous wrote:Boston Children's

Thanks, do you have personal experience there? Or any comparison with JHU or Children's National?

[Anonymous]

Waiting on EEG (overnight), for focal cortical dysplasia which was found incidentally on an MRI. We are at Childrens National. Has your kid had an MRI?

[Anonymous]

Anonymous wrote:Waiting on EEG (overnight), for focal cortical dysplasia which was found incidentally on an MRI. We are at Childrens National. Has your kid had an MRI?

We are DC-based normally, but on an overseas assignment for work. We've had a basic MRI overseas (since the first seizure coincided with a fall and we were trying to determine which came first), but I have questions about the quality. Given all the complexities with focal epilepsy, we will definitely return back to the States for a diagnosis.

Have you been happy with Children's National so far? Did they do an epilepsy protocol MRI for you or was it a standard one?

[Anonymous]

Anonymous wrote:

Anonymous wrote:Boston Children's

Thanks, do you have personal experience there? Or any comparison with JHU or Children's National?

Went with Boston Children's (admittedly over a decade ago) at the recommendation of our JHU pediatric endocrinologist. They were fantastic.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Waiting on EEG (overnight), for focal cortical dysplasia which was found incidentally on an MRI. We are at Childrens National. Has your kid had an MRI?

We are DC-based normally, but on an overseas assignment for work. We've had a basic MRI overseas (since the first seizure coincided with a fall and we were trying to determine which came first), but I have questions about the quality. Given all the complexities with focal epilepsy, we will definitely return back to the States for a diagnosis.

Have you been happy with Children's National so far? Did they do an epilepsy protocol MRI for you or was it a standard one?

So far we have been happy, but I don't have anything to compare it too, unfortunately. What did the MRI show? There is an FCD specialist at Childrens, so we felt very lucky that we were close by. I would say if you have a support system in the DC area, I would come to Childrens. The FCD Speciaist is in Rockville.

[Anonymous]

My DD sees Dr. William Gaillard at Childrens. Long wait lists. He is brilliant, too the point, and very nice. I am sad she is aging out of Childrens and will need to find someone else.

[Anonymous]

Anonymous wrote:My DD sees Dr. William Gaillard at Childrens. Long wait lists. He is brilliant, too the point, and very nice. I am sad she is aging out of Childrens and will need to find someone else.

Thank you for your help!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Waiting on EEG (overnight), for focal cortical dysplasia which was found incidentally on an MRI. We are at Childrens National. Has your kid had an MRI?

We are DC-based normally, but on an overseas assignment for work. We've had a basic MRI overseas (since the first seizure coincided with a fall and we were trying to determine which came first), but I have questions about the quality. Given all the complexities with focal epilepsy, we will definitely return back to the States for a diagnosis.

Have you been happy with Children's National so far? Did they do an epilepsy protocol MRI for you or was it a standard one?

So far we have been happy, but I don't have anything to compare it too, unfortunately. What did the MRI show? There is an FCD specialist at Childrens, so we felt very lucky that we were close by. I would say if you have a support system in the DC area, I would come to Childrens. The FCD Speciaist is in Rockville.

Sorry, the standard MRI didn't show anything. I agree having the support system in DC would be so nice (and just the familiarity). Thanks for your advice and best of luck to you and your kid in this terrible journey!