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Name the BEST pediatric epilepsy dr/hospital - we will go ANYWHERE!

I am searching the world for the best pediatric epilepsy doctor or hospital for my 10 yr old son. We have been to MN, OH, and 3 different hospitals in Chicago,IL. All of them take on my son's case & then ignore us when things dont get any better. They talk of surgery, but dont set up the necessary tests - I call them repeatedly since hes not doing better, hes worse - they increase his medicine, it does nothing, they do nothing. They rarely return my calls - in the meantime, my son suffers, his schooling suffers, his social life suffers. PLEASE - can anyone recommend the best dr out there for him? I will go ANYWHERE - plane, train, automobile - my son has right frontal lobe intractable epilepsy with complex partial seizures. he also suffers from post-ictal psychosis on a regular basis. Thank you for your help.

Comments

Re feelin the same

Nice to hear im not the only one to feel this way! My daughter is 16 and has the same intractable epilepsy with complex partial seizures along with a secondary generalized! I have done everthing possible! I think it is the hardest thing going to different dr's explaining everthing & walking out with nothing different! I am in need of the same! 

Re: Name the BEST pediatric epilepsy dr/hospital - anywhere!

I have been trying to get my daughter into the Pediatric Mayo clinic in Rochester.  I have heard that it is the best.  I faxed over my info, but so far nothing back.  We too will go anywhere and do anything!  I have not switched Neuro's yet, but will probably have to.  I am affraid to switch and start all over again, but we are getting nowhere.  My daughter has a seizure every 15 minutes, when awake and asleep.  I thought that the Zonisamide was working because we did not have any big seizures, but the test show that they are still there.  Currently she is having more fruquent absence and the higher the dosage the more we see.  You can contact me directly at mlbc3@cox.net.  Good luck,

 

Laure.  : )

Re: Name the BEST pediatric epilepsy dr/hospital

This is a list of best Pediatric docs as recommended by eforum members, based upon positive personal experiences.

ARIZONA

Dr. Kevin Chapman (Pediatric Epileptologist/Neurologist), Barrows Neurological Institute, Phoenix, AZ

CALIFORNIA

Dr. Nutik, Kaiser-Redwood City, CA

Dr. Joyce Wu, UCLA Mattel Children’s Hospital Division of Pediatric Neurology, CA

CHICAGO

Dr. Douglas Nordli – Pediatric Epileptologist, Children’s Memorial Hospital, Chicago, IL

CONNETICUT

Francine Testa, Yale -New Haven Hospital, New Haven, CT

FLORIDA

Dr. Ronald Davis, Orlando, FL

GEORGIA

Dr. Robert Flamini, Scottish Rite Children’s Hospital, Atlanta, GA

Dr. Sandra Helmers, Emory University, Atlanta, GA

Dr. Roger Hudgins, Scottish Rite Children’s Hospital, GA

ILLINOIS

Dr. Marianne Larsen, Children’s Memorial Hospital, Chicago, IL

INDIANA

Dr. Vicenta Salanova, Riley Hospital for Children, Indianapolis, IN

MARYLAND

Dr. William R Leahy, Greenbelt, MD

Dr. Naidu, Kennedy Krieger Institute, Baltimore, MD

MASSACHUSETTS

Dr. Adjani, UMassachusetts Medical Center, MA

Dr. Blaise Bourgeois, Children’s Hospital, Boston, MA

Dr. Laurie Douglass, Boston, MA

Dr. Frances E. Jensen, Children’s Hospital, Boston, MA

Dr. Joseph Madsen, Children’s Hospital, Boston, MA

Dr. Kenneth Sassower, Massachusetts General Hospital, Boston, MA – Children & Adults — Neurologist/Epileptologist

Dr. Ronald Thibert, Massachusetts General Hospital, Boston, MA

Dr. Elizabeth Thiele, Massachusetts General Hospital, Boston, MA — Pediatric Neurologist and Epileptologist

MICHIGAN

Dr. Harry Chugani, Detroit Children’s Hospital, Detroit, MI

Dr. Eileen McCormick, Michigan Institute for Neurological Disorders (MIND), Farmington Hills, MI

MINNESOTA

Dr. Mary Dunn, St. Paul Children’s, St. Paul, MN

Dr. Frost, Minnesota Epilepsy Center, St. Paul, MN

MISSOURI

Dr. David Callahan, St. Luke’s Hospital, West Chesterfield, MO

Dr. James Rohrbaugh, St Luke’s Hospital, Chesterfield, MO

Dr. William Rosenfeld, Children’s Hospital, St. Louis, MO

Dr. Richard Torkelson, Children’s Mercy, Kansas City, MO

NEW JERSEY

Dr. Steven Kugler, Robert Wood Johnson Hospital, New Brunswick, NJ

Dr. Wollack, Robert Wood Johnson Hospital, New Brunswick, NJ

NEW YORK

Dr. Claudia Chiriboga, Columbia Presbyterian, NY

Dr. Gail Solomon, NYU Comprehensive Epilepsy Center, NY

NORTH CAROLINA

Dr. Darrell V. Lewis, Duke Children’s, NC

OHIO

Dr. Kerry Crone, Children’s Hospital Medical Center, Cincinnati, OH

Dr. Cynthia Foldvary, ClevelandClinic, Cleveland, OH

Dr. David Franz, Children’s Hospital Medical Center, Cincinnati & Mason, OH

Dr. Gupta, Cleveland Clinic, Cleveland, OH

Dr. Roger Hudgins, Akron Children’s Hospital, Akron, OH

PENNSYLVANIA

Dr. Khurana, St. Christopher’s Hospital, Philadelphia, PA

TENNESSEE

Dr. Paul Knowles, T.C. Thompson’s Children’s Hospital, Chattanooga, TN

Dr. Barbara Olsen, Pediatric Neurology Associates, Nashville, TN

Dr. James Wheless, LeBonheur Hospital, Memphis, TN

TEXAS

Dr. Imad T. Jarjour, Houston, TX

Dr. Anthony Riela, Texas Child Neurology, Plano, TX

Dr. Angus Wilfong, Texas Children’s Hospital, Houston, TX

VIRGINIA

Dr. Pearl, Fairfax, Virginia

WASHINGTON, D.C.

Dr. Pearl, Children’s National Medical Center, Washington, D.C.

WISCONSIN

Dr. Kurt Hecox, Children’s Hospital of Wisconsin, Milwaukee, WI

Dr. S. Anne Joseph, Children’s Hospital of Wisconsin, Milwaukee, WI

Dr. Mary Zupanc, Children’s Hospital of Wisconsin, Milwaukee, WI

Hope this helps.

Phylis Feiner Johnson
www.epilepsytalk.com

Re: Name the BEST pediatric epilepsy dr/hospital - we will go AN

My pediatric neurologist was Daniel Alder, in New Jersey... I don't know if he's taking any new clients though.

Re: Name the BEST

Shannon, Did you ever find a Dr? Let me know who you found. curtis.wybourn@us.qbe.com

Curt

University of Chicago

University of Chicago

Re: Name the BEST pediatric epilepsy dr/hospital -

TO ANYONE WHO COMES ACROSS THIS DISCUSSION:

The Cleveland Clinic has the best pediatric epilepsy program in my experience. We went to several other top hospitals and no one could diagnose my son or stop his near-constant seizures. The doctors at the Cleveland Clinic discovered a subtle malformation in his brain, performed surgery to remove it, and now my son is seizure free and developing well. The expertise and experience they have there is phenomenal, and I find the doctors all personable and caring. We love the Cleveland Clinic!

Name the BEST pediatric epilepsy dr/hospital -

Hugs and hang in there **  Do you know what kind of E?  IF you do, then look for a Dr with that as a specialty.  I had a great Dr who was #1 with surgery.  My kids will never be candidates for surgery so I found someone specializing in genetic E.  If meds fail you.  There is always the Keto diet.  They are also doing alot of work with a modified Atkins diet.

I wish you well

joan*

My 16 yo daughter posted a video on YouTube. She's discussing her dealing with E. Its not an academy award winner but I thought it funny, sad and I'm just glad she did it. Its called Epilepsy and me

http://www.youtube.com/watch?v=Pa1wWCzhoiI

http://health.groups.yahoo.com/group/JuvenileMyoclonicEpilepsy/

Son lamictal 175 2x 19 Grand Mals - Stable Daughter keppra 750 16 Juvenile myclonic - Not stable yet Both had first issues at 15 - Both JME - gotta love puberty : ) * Both dealing with the nuances that come with it*

Re: Name the BEST pediatric epilepsy dr/hospital

My daughter was originally diagnosed by Dr. Puri in Louisville, KY.  He worked with us through different medications and had the VNS implanted into our daughter.  Upon relocating to Wisconsin, we had the blessing of finding Children's Hospital of Wisconsin where we met Dr. Zupanc and Dr. Marcuccilli.  Though both work together on most cases, we have been working with Dr. Marcuccilli and couldn't be more pleased.  He is one of the more patient, respectful, and detailed doctors with which we've ever worked.  He began an evaluation as to whether my daughter would be a surgical candidate and ultimately determined that she was.  We then met Dr. Lew and are presently in the hospital going through the grids mapping and ultimately brain resection.  We can't say enough about Dr. Marcuccilli or Dr. Lew - both are outstanding.  Additionally, the staff at Children's hospita are fantastic.  We have not met one nurse that wasn't excellent with our daughter; all are very caring and treat her with utmost care and respect.    The facilities at Children's Hospital of Wisconsin are also very good.  The ICU floor just opened late last summer and is amazing.  I would without a doubt recommend Dr. Marcuccilli and Children's Hospital in Wisconsin for your son.

Re: Name the BEST pediatric epilepsy dr

I did not have seizures at a yong age and did not deal with this Dr personally, but I have read a lot of work by him, and reviews of him. Dr. Eric Kossof, Johns Hopikins-Baltimore. You should go to the link below, he is well known for using the ketogenic diet to control seizures in children.

 

http://www.hopkinsmedicine.org/neurology_neurosurgery/experts/team_member_profile/97901FB18825260E83B7EEFD6DE941B9/Eric_Kossoff

Re: Name the BEST pediatric epilepsy dr/hospital -

I realize Boston and New Haven are quite the trip, but my neurologist reccomended these doctors for friends of mine who needed pediatric doctors and they were very happy.  Dr. Annapurna (Ann) Poduri, at Boston Childrens.  her office # is 617-355-8656.  Also Francine Testa, Susan Levy, and Laura Ment at Yale-New Haven.  I don't have any of their #'s, sorry. 

Re: Name the BEST pediatric epilepsy dr/hospital - we will go AN

DR.KELFER AT COOKS CHILDRENS MEDICAL HOSPITAL (TRUST ME HE IS GODS GIFT TO EARTH)

Re: BEST pediatric epilepsy dr/hospital - we will go ANYWHERE!

Dr. Passaro St. Petersburg, FL

Dr. Naqvi, Miami Children's Hospital

Dr. Kojik, Orlando, FL

Wonderful, caring doctors that will help you get to the root of your problem.  I highly suggest that you work with a doctor in a level 4 facility.  The top two doctors both work at a Level 4.

Re: Name the BEST pediatric epilepsy dr/hospital

My 17 year old son has had epilepsy since age 3. He has partical focal seizures that they think come from his right frontal lobe and is also refractory. We live in greater NY area and have been everywhere. Best doctor hands down is Dr. Orrin Devinsky at NYU Medical Center in New York City. They are a Stage 4 Epilepsy Center. Dr. Devinsky has authored books on the subject which cover absolutely everything a patient or caregiver could want to know. He is also the featured doctor in the current Newsweek article about Epilepsy. Go to NYU's website for more info on Dr. Devinsky and NYU's program http://www.med.nyu.edu/ Good luck!

Re: Name the BEST pediatric epilepsy dr/hospital - we will go

Hi Shannon,

I know things can be very difficult. When My son had his first Sezuire I had just fallen asleep with him on the couch and awoke to what I thought was a seziure, but wasn't sure I, or more aless didn't want to beleive it. Abut a week later he had a Grand-Mal and was rushed to the hostpital. His PCP recommended that he go to the only Nueologist in NH that handled children with epilepsy. I demanded and fought my insurance so I could take him to  Childrens Hospital in Boston. The group has been fabulous in the care of my son. He had a total of 3 since the recorded Grand-Mal and has not had one for almost a year. The worked him on a controling medication, and kept in constant contact with me to make sure it was working. I can swear by the medical Attention you will recieve in Boston. My Dad was burned 35% of his body, my brother was almost killed in a car accident and my Mom had Cancer, All were treated at Hospitals associated with Harvard University School of medicine. The link below is the main page to the Neurology Dept. at Children's Hos. Boston

http://www.childrenshospital.org/clinicalservices/Site2132/mainpageS2132...

 

Re: Name the BEST pediatric epilepsy dr/hospital

I know that this is an old post however I just came across it and wanted to chime in. We take my son to Duke University's Duke Children's Hospital. We see Dr. Mohamad Mikati.
http://www.dukehealth.org/physicians/mohamad_a_mikati
I highly recommend him. My son's case is complicated and although we do not yet have a formal diagnosis (we are currently awaiting the results from complete gene sequencing) Dr. Mikati is determined to help my son. We have made definite progress. We have seen other neurologists and one of them basically just gave up and wanted to continue to redo the same tests over and over and was not willing to help us find medications that would help and not make my son feel like a zombie. There is a long wait to get in as a new patient but knowing a doctor that can help you get in makes the wait shorter.

Re: Name the BEST pediatric epilepsy dr/hospital

I know that this is an old post however I just came across it and wanted to chime in. We take my son to Duke University's Duke Children's Hospital. We see Dr. Mohamad Mikati.
http://www.dukehealth.org/physicians/mohamad_a_mikati
I highly recommend him. My son's case is complicated and although we do not yet have a formal diagnosis (we are currently awaiting the results from complete gene sequencing) Dr. Mikati is determined to help my son. We have made definite progress. We have seen other neurologists and one of them basically just gave up and wanted to continue to redo the same tests over and over and was not willing to help us find medications that would help and not make my son feel like a zombie. There is a long wait to get in as a new patient but knowing a doctor that can help you get in makes the wait shorter.

Re: Name the BEST pediatric epilepsy dr/hospital - we will go

In my life I have two heroes. I can’t choose between them for so much they have both changed my life. Mary L. Zupanc, MD, FAAP, was my pediatric epileptologist for four years at Children’s Hospital of Wisconsin in Milwaukee. She is chief of neurology at the hospital, and also the head professor of neurology at the Medical College of Wisconsin. She is a member of Children’s Specialty Group, and is a nationally recognized expert in pediatric epilepsy. My second hero who I give just as much credit to as my first is Dr. Sean Lew. Dr. Lew is a pediatric neurosurgeon at Children’s hospital of Wisconsin, and assistant professor at the Medical College of Wisconsin. He also is a member of Children’s Specialty Group. His practice includes general pediatric neurosurgery, with particular interest in epilepsy surgery, neoplasms of the brain and spine, and spinal injury and malformations. Both of these people do remarkable things and will always be heroes in my mind.            When I was nine years old, I started seeing a neurologist for my seizure disorder. For six years I saw that same doctor but I didn’t gain any progress with controlling my seizures. My mom and I decided to change doctors and go to Children’s hospital of Wisconsin. When I first meet Dr. Zupanc, She was just another doctor to me. By the end of my first visit with Dr. Zupanc, I could tell that I really liked her a lot. By my second visit, she was already telling me that there was surgery for the type of seizures I had. I tried five different seizure medications over the time of nine years and they all failed. I defiantly had some thinking to do.            Ever since I was nine years old, I was told not to almost everything without there being some kind of restriction to it because of my seizure disorder. Ages nine to 18 were some rough years for me. The years that you are supposed to enjoy as a kid, I struggled in life dealing with a seizure disorder. After years passed I kind of got used to it, but I still never had the freedom everyone else my age had. The hardest thing for me was being told I couldn’t do something. It wasn’t just being told no for that day, it was no until I got my seizures under control for a long period of time. It was like certain carriers such as, military, a doctor or a surgeon, a fire fighter, and many others that all sparked my interest but I couldn’t do.  After a year of thinking went by, I decided I wanted the surgery. If the surgery was successful, it would completely eliminate my seizures and I wouldn’t have to worry about them again.            After nine months of very rigorous testing, I became one of the best surgery candidates they’ve ever had according to my doctor and many other medical personal at the hospital. A lot of my testing included, in depth MRI scans, and tests of the brain to locate where both the seizure activity was, and where things such as my speech, motor skills, vision, and other key things were in my brain. All of my tests came back just how my doctor wanted them to. Therefore, the greater my chances were for success.            When my surgery was a for sure thing, I finally met my surgeon Dr. Lew. I had one meeting with both my doctor and my surgeon. Dr. Lew went over multiple MRI photos and showed me exactly what the surgery procedure was and how it would be done. That was very helpful, even though I was ready the day I decided to have it done. That same day, my surgery was scheduled for two weeks later. Both my doctor and my surgeon were very confident. There were no doubts, ifs, ands, or buts about it. They were almost positive they had the solution. That always makes you feel good about having it done. I was excited and couldn’t wait to have it done.            These two doctors are the idols of my life and are a big reason why I want to become a neurosurgeon. Both of them know this and they are very happy and support my decision. I find it really cool because I have built more than just a doctor patient relationship with them. I have more of a personal relationship with them too. I will never find a better doctor or surgeon if I had too. I got very lucky with these two and it has changed my life forever. I believe miracles do happen because I can know live my life exactly how I want to without any restrictions.

            I strongly recommend that you take your kid to see this doctor and surgeon. Although the treatment for seizures isn’t 100 percent, I can almost promise they will eliminate your child’s seizures for good. I hope this helps, i have no doubts what so ever with these doctors. Book an appointment now. They are both nationally well known for their excellence, there for they are very busy, but by no means will they blow you off. They are truly the best out there.

  

Re: Name the BEST pediatric epilepsy dr/hospital - we will go

Amen to the praises for Dr. Mary L. Zupanc!!  Doctor after doctor had been throwing their hands up at our precious Katie for 2.5 years until at last our prayers were answered and this angel came into our lives!!  Dr. Zupanc also helped the son of the founder of the American Epilepsy Outreach Foundation (Emmett- there is a video about him on the Web http://www.epilepsyoutreach.org/emmett.html).

Dr. Zupanc has now moved to Children's Hospital of Orange County to head their neurology division (http://www.choc.org/chocdocs/profile.cfm?pid=1643).  We just did a 36-hour VEEG follow up and Katie is now completely seizure-free with a completely clean EEG!  Dr. Zupanc first admitted Katie this past January while she was still in MN and refused to let her leave until they found the perfect combination of treatments to bring about our long-awaited prayer of seizure control.

During our stay, Dr. Z departed for her move to California and her protege, Dr. Charles Marcuccilli (http://www.chw.org/Applications/PPF/DocID/37874/CredentialingID/3709/PhysHomePage.asp), took over Katie's case management.  I cannot say enough good things about either of them!!  So knowledgable, compassionate & devoted.  Unlike any of the other epileptologists & neurologists we have encountered they are THERE for your 24/7 fighting to win the seizure battle, and they know their business!!

We would highly recommend both Dr. Zupanc in California AND Dr. Marcuccilli at Children's Hospital of Wisconsin (Milwaukee) to ANYONE looking for seizure control for their child.  If anyone can help your child they can!!

Katie has been seizure-free ever since discharge this past January, on her "magic bullet" combination of Felbatol, Depakote & Diamox.  She has been recapturing the childhood she was losing to epilepsy since age 4.

After all this time our BIGGEST regret was wasting 1.5 years of her life in the hands of JOHNS HOPKINS HOSPITAL's Ketogenic Diet program.  DO NOT waste your child's time & life in their incapable hands.  Forget all their good PR buzz generated by "First Do No Harm" and the like; they are as compassionate and moral as snake oil salesmen.  They are only interested in selling their one epilepsy product (the diet) and when your child's seizures return, they will ignore you unitil you are forced to quit so that they can write up in their reports that you failed in your duty as a parent rather than the fact that their treatment failed to help your child.  On more than one occassion under their "care," Katie went into period of non-convulsive status for periods exceeding 1 month.  We BEGGED them to let us fly her up there to their EMU, refer us to other specialists, ANYTHING to help our child.  Dr. Eric Kossoff just sent us some snyde emails telling us that we were basically on our own.

Thank the Lord in his wisdom for opening the perfect window once we finally let that horrendous door close.  Dr. Zupanc responded to an email request I sent her within an hour and said she would do everything she could to admit Katie to their EMU to help her - even though it was her last week in the hospital before moving to California!!

To any parent who's seen their child struggle with a rare, intractable epilepsy - and with inadequate treatment by unqualified doctors - doctors like Mary Zupanc and Charles Marcuccilli are a God-sent blessing!!

Please don't let seizures steal any more time away from your child's life without giving at least one of these gifted healers a call.

Prayers for you and your families through this struggle.

Re: Name the BEST pediatric epilepsy dr/hospital - we will go

From all of your wonderful suggestions, here is an updated list of best Pediatric Docs:

PEDIATRIC RECOMMENDATIONS

ARIZONA

Dr. Kevin Chapman (Pediatric Epileptologist/Neurologist), Barrows Neurological Institute, Phoenix, AZ

CALIFORNIA

Dr. Nutik, Kaiser-Redwood City, CA

Dr. Donald Shields, UCLA Mattel Children’s Hospital Division of Pediatric Neurology, CA

Dr. Joyce Wu, UCLA Mattel Children’s Hospital Division of Pediatric Neurology, CA

Dr. Mary Zupanc, Children’s Hospital, Orange County, CA — Epileptologist

CHICAGO

Dr. Douglas Nordli – Pediatric Epileptologist, Children’s Memorial Hospital, Chicago, IL

CONNETICUT

Francine Testa, Yale -New Haven Hospital, New Haven, CT

FLORIDA

Dr. Ronald Davis, Orlando, FL

Dr. Kojik, Orlando, FL

Dr. Naqvi, Miami Children’s Hospital, Miami, FL

Dr. Passero, St. Petersberg, FL

GEORGIA

Dr. Robert Flamini, Scottish Rite Children’s Hospital, Atlanta, GA

Dr. Sandra Helmers, Emory University, Atlanta, GA

Dr. Roger Hudgins, Scottish Rite Children’s Hospital, GA

ILLINOIS

Dr. Marianne Larsen, Children’s Memorial Hospital, Chicago, IL

INDIANA

Dr. Vicenta Salanova, Riley Hospital for Children, Indianapolis, IN

KENTUCKY

Dr. Vinary Puri, Director of Child Neurology, Kosair Children’s Hospital and University of Louisville, Louisville, KY

MARYLAND

Dr. William R Leahy, Greenbelt, MD

Dr. Naidu, Kennedy Krieger Institute, Baltimore, MD

MASSACHUSETTS

Dr. Adjani, UMassachusetts Medical Center, MA

Dr. Blaise Bourgeois, Children’s Hospital, Boston, MA

Dr. Laurie Douglass, Boston, MA

Dr. Frances E. Jensen, Children’s Hospital, Boston, MA

Dr. Joseph Madsen, Children’s Hospital, Boston, MA

Dr. Kenneth Sassower, Massachusetts General Hospital, Boston, MA – Children & Adults — Neurologist/Epileptologist

Dr. Ronald Thibert, Massachusetts General Hospital, Boston, MA

Dr. Elizabeth Thiele, Massachusetts General Hospital, Boston, MA — Pediatric Neurologist and Epileptologist

MICHIGAN

Dr. Harry Chugani, Detroit Children’s Hospital, Detroit, MI

Dr. Eileen McCormick, Michigan Institute for Neurological Disorders (MIND), Farmington Hills, MI

MINNESOTA

Dr. Mary Dunn, St. Paul Children’s, St. Paul, MN

Dr. Frost, Minnesota Epilepsy Center, St. Paul, MN

MISSOURI

Dr. David Callahan, St. Luke’s Hospital, West Chesterfield, MO

Dr. James Rohrbaugh, St Luke’s Hospital, Chesterfield, MO

Dr. William Rosenfeld, Children’s Hospital, St. Louis, MO

Dr. Richard Torkelson, Children’s Mercy, Kansas City, MO

Dr. Edwin Trevathan, St. Louis Children’s Hospital, St. Louis, MO

NEW JERSEY

Dr. Steven Kugler, Robert Wood Johnson Hospital, New Brunswick, NJ

Dr. Wollack, Robert Wood Johnson Hospital, New Brunswick, NJ

NEW YORK

Dr. Claudia Chiriboga, Columbia Presbyterian, NY

Dr. Gail Solomon, NYU Comprehensive Epilepsy Center, NY

NORTH CAROLINA

Dr. Darrell V. Lewis, Duke Children’s, NC

Dr. Michael B. Tennison, Chapel Hill, NC

OHIO

Dr. Kerry Crone, Children’s Hospital Medical Center, Cincinnati, OH

Dr. Cynthia Foldvary, ClevelandClinic, Cleveland, OH

Dr. David Franz, Children’s Hospital Medical Center, Cincinnati & Mason, OH

Dr. Gupta, Cleveland Clinic, Cleveland, OH

Dr. Roger Hudgins, Akron Children’s Hospital, Akron, OH

PENNSYLVANIA

Dr. Khurana, St. Christopher’s Hospital, Philadelphia, PA

Dr. Strom, Children’s Hospital of Philadelphia, Philadelphia, PA

TENNESSEE

Dr. Paul Knowles, T.C. Thompson’s Children’s Hospital, Chattanooga, TN

Dr. Barbara Olsen, Pediatric Neurology Associates, Nashville, TN

Dr. James Wheless, LeBonheur Hospital, Memphis, TN

TEXAS

Dr. Imad T. Jarjour, Houston, TX

Dr. Howard Kelfer, Cook Children’s Medical Center, Fort Worth, TX

Dr. Anthony Riela, Texas Child Neurology, Plano, TX

Dr. Angus Wilfong, Texas Children’s Hospital, Houston, TX

VIRGINIA

Dr. Pearl, Fairfax, Virginia

WASHINGTON, D.C.

Dr. Pearl, Children’s National Medical Center, Washington, D.C.

WISCONSIN

Dr. Kurt Hecox, Children’s Hospital of Wisconsin, Milwaukee, WI

Dr. S. Anne Joseph, Children’s Hospital of Wisconsin, Milwaukee, WI

Dr. Lew, Children’s Hospital of Wisconsin, Milwaukee, WI

Dr. Marcuccilli, Milwaukee, WI — Epileptologist

Any additions, subtractions or corrections are welcome...

THANKS!

Phylis Feiner Johnson
www.epilepsytalk.com

Re: Name the BEST pediatric epilepsy dr/hospital - we will go

Hands down, any of the four epileptologists at Cleveland Clinic.  Dr. Wyllie, Dr. Gupta, Dr. Lichwanni or Dr. Kotogal.

Re: Name the BEST pediatric epilepsy dr/hospital - we will go

Hands down, any of the four epileptologists at Cleveland Clinic.  Dr. Wyllie, Dr. Gupta, Dr. Lichwanni or Dr. Kotogal.

Re: Name the BEST pediatric epilepsy dr/hospital - we will go

Hands down, any of the four epileptologists at Cleveland Clinic.  Dr. Wyllie, Dr. Gupta, Dr. Lichwanni or Dr. Kotogal.

Re: Dr. Kossoff & Johns Hopkins Keto Program

RE: Dr. ERIC KOSSOFF - I really would avoid this guy.  His treatment of our daughter was SHAMEFUL.   (see my comments about my daughter Katie & the truly good epileptologist, Dr. Zupanc, below). 

Re: DR. ZUPANC & DR. MARCUCCILLI

Thank heaven for DR. ZUPANC & DR. MARCUCCILLI!  So glad to hear more words of praise for them!!  They helped our daughter, too, when no one else could/would!! (see my comments below)

Re: Name the BEST pediatric epilepsy dr/hospital - we will go AN

Can you tell me where the hospital is located? Is it Chicago?

Phylis Feiner Johnson
www.epilepsytalk.com

Re: Name the BEST pediatric epilepsy dr/hospital - we will go AN

where is cooks childrens hosp.? Thank you..

Re: Name the BEST pediatric epilepsy dr/hospital - we will go AN

Did u try contacting the Epilepsy foundation? I know you will find something here from someone... They always do have great offers to share.. Wish you well...

Re: Name the BEST pediatric epilepsy dr/hospital - we will go AN

I know this original post was in 2006 but did u have any luck? I have a 4 yr old that has severe epilepsy (Lennox Gastaut syndrome) and I need to also find the best dr possible. I too will also travel anywhere, but I only have one shot as we live in Australia and I don't have the money to travel to 100 different drs, I don't mind seeing a few but I need the best of the best.

Re: Name the BEST pediatric epilepsy dr/hospital - we will go AN

Donald Shields at UCLA in California was recommended to me for my daughter.  Also I have read the Children's Hospital Of Philadelphia is the best for Pediatric Neurology in the US.  Hope this helps!

Re: Name the BEST pediatric epilepsy dr/hospital - we will go AN

My daughter Kailey is being treated at Childrens Hosp of Philadelphia - they really are great there,but we are still seeking a second opinion. She was diagnosed with tuberous sclerosis within days of birth, and is now 10 weeks. We spent 6 weeks at CHOP and are so pleased with Dr. Porter our Neurologist, and our consult with Dr Strom the neurosurgeon. The hosp is one of the best in the country and we definitely recommend it. Right now we are looking at a hemispherectomy. Once we get a 2nd opinion and if they agree surgery is best for Kailey's constant subclinical seizures, we will definitely have Sr. Stor perform - he is one of the top pediatric neurosurgeons in the US

Re: Name the BEST pediatric epilepsy dr/hospital - we will go AN

Children's Hospital of Philadelphia is supposed to be the best in the nation, I haven't been but my bosses (neurosurgeons) work with them and also Chicago Children's.

Re: Name the BEST pediatric epilepsy dr/hospital - we will go AN

Try Dr. Jayne Anthony in Westmead Children Hospital in Sydney. I used to see her when I lived in Australia. Good luck!

Oh, another one, Dr. Andrew Kornberg. He's in Melbourne but I can't really remember which hospital he's at. Last time I saw him was about 15 years ago. He is very nice and informative.

Re: Name the BEST pediatric epilepsy dr/hospital - we will go AN

I know this post is old but i was interested what you found out. my  step daughter has seizures and they were thinking she may have the lennox gastaut syndrome.

Good pediatric neuro Dr.

Good pediatric neuro

Dr. Richard D. Torkelson
He is a pediatric neurologist at Childrens Mercy Hospital in Kansas City, MO. He has a specialty interest in epilepsy and epilepsy surgery.

http://www.childrensmercy.org/MSO/default.asp?tab=PC
I am unable to provide a working link directly to the page on him.
Go to Children's Mercy Specialty pediatricians, and the dropdown list will have his name on it.

I went to this doctor growing up. He was always good with me. He took time to listen. I haven't had a doctor do as well at listening since. It has been 10 or 11 years since I saw him though.

Emily

Re: Name the BEST pediatric epilepsy dr/hospital - we will go AN

Hello Shannon -

I have been through numerous neurologists/epileptologists from New York, New Jersey, Florida, Denver, Boston, and Toronto. Some were good, some little to be desired.

A little about me, I began having seizures at 8 months old. It took 22 years to find a doctor who was able to diagnose my condition, I never heard of the words 'epilepsy' seizures' or 'convulsions' before that. I am not saying all those doctors were bad, you do have to also consider technology, we are going back 45 years. (Denver/Toronto)

After I was finally diagnosed, they found the right drug cocktail to control the seizures, unfortunately this only lasted for 10 months. I was then on a mission for the next form of treatment. It took another 12 years to find a doctor who found the focal point, which led to me being a candidate for surgery. (Miami) I asked for a second opinion and was referred to my current doctor, Orrin Devinsky at NYU.

At that point, I then researched for the best neurosurgeon, in some of the top Comprehensive Epilepsy Centers [Cleveland Clinic, MAYO Clinic, John Hopkins, George Washington, and NYU]. I wrote to all of these centers to collect the statistics of each neurosurgoen. One who had the most experience, least complications, highest success rate. I was most impressed with the neurosurgeon from NYU at the time, for several reasons. Cleveland Clinic, John Hopkins and George Washington all had a nurse practitioner answer my questions. MAYO Clinic turned my stomach with their ego, they called me and told me they set up a week of testing, and told me my family could stay at the Ronald Mc Donald House without even consulting me with the time, etc, or even answer one of my questions. At NYU, the neurosurgeon himself called me up and answered all my questions. He spoke with me for 1 1/2 hours until I understood everything that the surgery entailed, my options, several procedures that were my choice etc.

At the time I lived in Florida, now in California, and have been seeing the doctors at NYU since 1993. Besides the successful surgery; when I call the epileptologist, I get a returned call that same day, from the doctor himself; when I email the epileptologist, I get a response the same day or next morning, including weekends; when I ask for assistance, it is done the same day; when I need a prescription filled, or called in, it is done within an hour. I don't understand why it is so difficult for all doctors to want to be professional in this way, isn't that what their profession should be?

I hope this helps, I am sure you know how to keep looking for the right doctor, you have seen enough. Unfortunately it does take time to find the right epileptologist for everyone. I wish you the best in finding the best one for you. If I can assist in any other way, just ask.

Best Wishes - - -

Jody

Re: Name the BEST pediatric epilepsy dr/hospital - we will go AN

You said you went to Chicago. Did you go to an epilepsy specialist at Children's in Chicago. We have the most fantastic doctor. We are so happy with him. Our first doctor was a general neurologist and such an --shole. Please contact me if you want to know who our doctor is. We can buddy list each other and then IM each other. It takes a while to get into Children's but if you get the right doctor, it can change your life.

Re: Name the BEST pediatric epilepsy dr/hospital - we will go AN

Hi, who did you see in Chicago? We have seen one doctor there. curtis.wybourn@us.qbe.com

Curt

Re: Re: Name the BEST pediatric epilepsy dr/hospital - we will g

Shannon,
Do you take him to a neurologist or an epileptologist? Here's a link I found that may help you in your search:

http://www.naec-epilepsy.org/

Hope this helps!

-Spiz

Re: Name the BEST pediatric epilepsy dr/hospital - we will go AN

Try Dr. Vinary Puri he is a wonderful dr we had the same problem untill we found him he is the professor of neurology and pediactrics
director divison of child neurology at university of louisville ky and director of child neurology kosair childrens hospital 502- 589-8233 is the number when he started seeing my son he was having three hundred seizures a day now he has been seizure free for a year and a half

Re: Name the BEST pediatric epilepsy dr/hospital - we will go AN

I would have to 2nd Cristy's recommendation.   However the phone number has changed to 502-589-8033.

 

When we arrived on site there was another family there that drove 5 hours to see Dr. Puri and we ourselves drove 2.5 hours after our experiences with Childrens Hospital of Cincinnati.    It turned out that Cincinnati Children's is doing cost cutting work visa employees.   You know, the ones that have no clue what they are doing and can hardly speak english. :(

 

Dr. Puri is a very nice fellow, very skilled at what he does from my impressions so far.    Testing facilities at Kosair Children's and UofL is not much better than Cincy Children's.... But at least they can speak the language.    YOU WILL get the feeling that you are lost in the shuffle... But you just have to stand up for your care and control your costs.

 

Most pediatric docs we have seen are nothing more than what I call "milkers"... Where they just feed on your wallet.   The age ole'... Lets try this medication and come back and see me in 4 weeks.   If you have a child with Epilepsy... you know the drill.     I did not get that impression with Dr. Puri, he seems very driven, very purposeful and he has a goal to ride your child of seizures.... period.

 

In closing I would recommend Dr. Puri without reservation.

 

Todd - Cincinnati, Ohio

 

 

Re: Name the BEST pediatric epilepsy dr/hospital - we will go AN

Try Dr. Vinary Puri he is a wonderful dr we had the same problem untill we found him he is the professor of neurology and pediactrics
director divison of child neurology at university of louisville ky and director of child neurology kosair childrens hospital 502- 589-8233 is the number when he started seeing my son he was having three hundred seizures a day now he has been seizure free for a year and a half

Re: Name the BEST pediatric epilepsy dr/hospital - we will go AN

Diana Neilson There is a doctor, his name is Michael B. Tennison and his address is 101 Manning Drive Suite 751 Chapel Hill, North Carolina. The phone number is (919) 966-7890. He was ranked one of the top 100 pediatric neurologists in the United States. I also personally know a woman who's daughter has been on medication for over four years, and every time the seizures would come back, her neurologist would do nothing but up the dosage on the her medication. Someone had recommended Dr. Tennison to her, and she took her daughter to him, he did another EEG, and told her that the medication her regular neurologist had her daughter on was not even recommended to target what was wrong with the child. Anyway he advised her to switch the medication to something else (not sure of the name of the new medication) and the child has not had a seizure now in over a year. I don't know your son's condition, but if you are willing to travel anywhere, call. I have a feeling this man might be able to help you. As the mother of a newly diagnosed child with a seizure disorder, my prayers are with you, and I would appreciate you dropping a line to tell me how everything works out.

Re: Re: Name the BEST pediatric epilepsy dr/hospital - we will g

You appear to be American, but in Canada there are 2 primary areas for kids and neurology as far as I know.
a) Toronto has great doctors and technology (Sick Kids Hospital OR St.Mikes-Queen East)
b) Montreal, Quebec & no you don't have to be totally french.

Maybe someone else will know the hospitals in PQ, but I often hear of people in Canada going to Quebec for surgeries, etc related to epilepsy.

I live an hour away from Toronto, so I see a neurologist out of St.Mike's Queen E., adult, but a great guy.

www.epilepsyontario.org (website to help)

Erin

Re: Name the BEST pediatric epilepsy dr/hospital - we will go AN

try st.louis MO DR.edwin trevathan at st.louis childrend's hospital im 15 and have been going to him since i was 8 yeaes old and he is really good and helpful to me with my E and my problems to so you should try him ok. *katie*

Re: Name the BEST pediatric epilepsy dr/hospital - we will go AN

I completely understand what you are going through. We have an appt. with our 6th neor. in Jan. My son has constant seizures and very little relief. He too, has complex partial seizures. He averages about one every minute on our "good " kdays. He kalso has tonic-clonic & believed to have absence as well.

Like many parents, we are simply looking for answers. The Epilepsy Foundation as been a wonderful resource. I have also researched and interviewed many doctors that we never made and appointment with. Best wishes with your search & your son's treatment.

Jennifer

Re: Name the BEST pediatric epilepsy dr/hospital - we will go AN

  I am looking for someone who is dealing with multiple seizure disorders and you seem to be.  I know that my daughter is suffering from absence seizures, as shown on her EEG and partial complex, as shown on her MRI.  She has also experienced 6 tonic chlonic.  The Neuro does not believe this and thinks that the MRI must have been read wrong.  I have worked with special needs children for well over ten years and I know what I am seeing, I just need someone to believe it and control it.  Right now I am just looking for people dealing with similar issues.  If you think that we could help eachother please contact me.  My direct email is mlbc3@cox.net Thanks,

 

Laure.  : )

Re: Name the BEST pediatric epilepsy dr/hospital - we will go AN

We use the Lebhoneur Children hospital in memphis, TN,  DR. James Wheless.  He is great.  My son was having over 200 siezures a day,  he couldn't do anything, and he was getting worse and worse.  ONe of his doctors thought my son was pretending,  but kept giving us medication increases only to watch him get worse and he started going into gran mahl seizures on top of the all the others.

We started going to DR. James Wheless in Nov 2009,  from that day forward, my son has not had one single siezure.  He is wonderful.

Re: Name the BEST pediatric epilepsy dr/hospital - we will go AN

dear phelpsji

my daughter is 9 years old and seffuring from abcences seizures sicne from jun/2010 and having( 20-30) seizures adayand till today the seizures not controled , and we interview more than 4 doctores and changed 6 kind of drugwith no use , i saw your comment about your son , so will you please if you can send to me the e mail of DR.James Wheless i will be thankfull , because i am living outside USA my email is (rohbeha102@yahoo.com)

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