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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 AN

Submitted by calijo on Wed, 2011-08-24 - 23:12

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.

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.

Submitted by missemmy on Thu, 2006-09-07 - 20:23
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

Submitted by epilepsyandme on Thu, 2006-09-07 - 21:53
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

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