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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 Jennifer Adams on Thu, 2006-12-14 - 16:09
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

Submitted by cassidy3 on Sat, 2009-12-26 - 12:28

  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.  : )

  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

Submitted by phelpsjl on Thu, 2011-07-14 - 13:49

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.

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.

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