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

Thu, 09/07/2006 - 19:54
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: Name the BEST pediatric epilepsy dr/hospital - we will go

Submitted by kristicain on Sat, 2011-06-18 - 02:03

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.

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

Submitted by phylisfjohnson on Sat, 2011-08-27 - 10:24
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

Submitted by admarshall on Fri, 2013-03-15 - 16:25
Hands down, any of the four epileptologists at Cleveland Clinic.  Dr. Wyllie, Dr. Gupta, Dr. Lichwanni or Dr. Kotogal.

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