Epilepsy Foundation

We are trying to find the best of the best - where epilepsy is concerned - just starting our research and thought of asking here 1st. 

We are in NC - but not concerned with location - just want the best.  My sons seizures are almost always status seizures and they are getting closer together and worse. 

Please, please if you have any reccommendations - let me know! 

Thank you & God Bless!

~misty~

www.caringbridge.org/visit/mistysangel

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We love, love, love Dr. LaJoie (was at NYU and is now at Long Island Medical Center). 
We see Dr. Hartman and have had the pleasure of seeing Dr. Vining as well at John Hopkins never had a problem with them and can't say a bad word either.

Good Luck.

Laurie
We go to John's Hopkins and LOVE everyone that we have seen there.  I agree with the names listed below at Hopkins you might also want to check out Dr. Wolf at JHH. 
Dr. Elaine Wyllie at Cleveland Clinic. My son used to see a neurologist at a different hospital and that neurologist referred him to see Dr. Wyllie. His words were that "if he had a son with epilepsy, he would take him to Dr. Wyllie." Cleveland Climic is also one of just a handful of hospitals in the country with a dedicated pediatric epilepsy monitoring unit. Its quite impressive not only the extent of monitoring and testing but also the compassion shown.
All the best! -Debi
I've heard wonderful things about Dr. Thibert at Mass General in Boston.  We're getting a second opinion from him in September.
Dr Thibert was our 3rd opinion and well worth the wait hes AWESOME!
I'm not sure how top of the line they are, but I love our epileptologist at the University of Chicago, Comer's Children's Hospital. is name is Dr. Michael Kohrman.  He recognized our daughter's epilepsy even though it was missed by another nuero.
I have heard great things about the Cleveland Clinic as well.  I know a couple of kids that had surgery there.

Debi Langsdale said:
Dr. Elaine Wyllie at Cleveland Clinic. My son used to see a neurologist at a different hospital and that neurologist referred him to see Dr. Wyllie. His words were that "if he had a son with epilepsy, he would take him to Dr. Wyllie." Cleveland Climic is also one of just a handful of hospitals in the country with a dedicated pediatric epilepsy monitoring unit. Its quite impressive not only the extent of monitoring and testing but also the compassion shown.
All the best! -Debi
Our daughter sees Dr. Mikati at Duke. He is the best one we have found in the area and we have seen teams of doctors.  My daughter is still undiagnoses and still has about 100 seizures a day but we have made more progress with Duke then we have with outher doctors.
My daughter is 12 and we go to Duke.  Duke’s Epilepsy Center is fantastic.  My daughter recently had surgery to remove a lesion on her frontal lobe that has been the cause of her seizures.  Duke did the evaluation and made their recommendation.  We did seek a second opinion so that we would not second guess are decision at a later time.  We did the second opinion at Mayo Clinic in Rochester.  While are experience with Mayo was fine we felt Duke was a better choice.  I can’t say enough about the care my daughter has received.  Her case was not an easy one and the whole team was involved in finding the best treatment for my daughter.  The epileptologists at Duke are Dr. Gallentine and Dr. Makati.  If surgery is a possibility Dr. Grant is the neurosurgeon and he is wonderful.
Kathryn Bailey

Yes!



Seberina said:

Kathryn, I would love to talk more with you about frontal lobe seizures and treatment. Is it ok if I send you a personal message?


Seberina said:
Kathryn, I would love to talk more with you about frontal lobe seizures and treatment. Is it ok if I send you a personal message? yes please do

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