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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

Name the BEST pediatric epilepsy dr/hospital -

Submitted by dainty on Mon, 2009-04-13 - 17:08

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*

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

Submitted by cjordan5 on Sat, 2010-02-06 - 04:52

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.

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

Submitted by missjulianne on Sat, 2010-02-06 - 14:40

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

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

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