Need help finding right doctors

[precious daughter]

Please help me I am new to the epilesy world. My daughter who is 6 has been diagnosed with complex partial seizures due to End folium hippocampal sclerosis in her right tempral lobe. This was diagnosed by a general neurologist and radiologist after an MRI done in Charlotte North Carolina. I think I need to take her to a Comprehensive Epilesy Center at a major medical center. Does anyone out there have any recommedations on where to go for pediatric epilesy? Has anyone been to or currently associated with Duke Medical Center and pediatric Neurology??? any advice???/

[Cint]

I wasn't diagnosed with epilepsy as a child, but I do have hippocampul sclerosis on the left side, so I do suggest you go to a pediatric neurologist at a Comprehensive Epilepsy Center. I see an epileptologist here in Denver at Univ. of CO Health Science. I'm not in your part of the U.S. but I do hear there is good care at Duke.

[precious daughter]

Thanks Cint. May I ask are you controlled with medication? Have any of your doctors talked about doing surgery?

[Cint]

Unfortunately, I am one of those who have tried many meds and did have a left temporal lobectomy that didn't help with my seizures. I couldn't have a 2nd surgery because of the location of the damaged area. I went on to have the VNS, which did help somewhat.

[Endless]

Phyllis posted a link to a list of epileptologist docs recommended by people with epilepsy. See this string:

Updated list of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric D

Finding a good doctor is HARD. I've been through 2 so far. My ideal doc would have the following:
- have a deep level respect for their patients and show that in their interaction,
- be blazingly smart and up on all the latest stuff,
- willing to consider and discuss all the aspects of the disorder including lifestyle, supplements, alternative treatments, the affect of other health issues on the epilepsy, etc.
- open to considering new ideas,
- is a good advocate for their patient with insurance, disability, workplace, etc,
- has a policy on maximum time for returning phone calls, and is available to return phone calls in a timely manner (especially during times of crisis),
- spends plenty of time with the patient and always makes the patient feel welcome to come in when they need to
- has great communication skills, both listening and explaining, and takes the time to do it.

I'm not asking them to be perfect on all this, just be above a certain minimum of competence on each of these things. Haven't found him/her yet.

I wish all doctors had a philosophy of care statement in writing or on the web that we could read ahead of time, that addressed all these areas. It would help weed out the bunch so we could choose who we want to see.

[PhylisFeinerJohnson]

Also, for the Best Neurology & Neurosurgery Hospitals in the U.S. as rated annually by the US News & World Report, go to http://health.usnews.com/best-hospit...d-neurosurgery

[valeriedl]

I have a great neurologist, but I don't live anywhere close to you. Check out some of the websites that others have posted that could help alot.

The only person that I had problems with was my neurologist's physicians asst. She was horrible! She accused me of not taking my meds or not taking them right among many other things and that was why I was having sez. I told my neurologist that I didn't want to see her any more, I used to see her every other visit. Now my neurologist see's me at every visit.

I also have a VNS implant because there is damage on both sides of my brain and cannot have surgery. I still take meds though. The neurologist was hoping that he could get me off of them with that, but I am taking less and lower dosages.

My sezs aren't nearly as bad as they were and I am having much fewer of them since I got the implant.

This would be your desicion, but maybe find a neurologist that has delt with one and you may get some information to see if it could be something that you would want.

The only down side to the VNS is that you cannot have an MRI.

[lindinig]

I highly recommend my son's neurologist, but unfortunately, I don't live near you either. He is the second neurologist we've had. The first one wasn't calling me back in a timely manner and when I did get a call, his nurse was the one who would talk to me. I asked so many questions about side effects to medicine and was constantly getting mis-information from her.

When I met with his new neurologist, I asked him how soon he returns phone calls in an emergency situation. I gave him an example of what I consider an emergency situation. I also explained that I'm not the type of person to call him every hour of every day, but I do expect a phone call within a few hours, if it has something to do with a reaction to his medicine, or if he has another seizure (before we finally got used to his crazy post-ictal state). He gave me his card and said if it's medicine-related, or if I have a question, to e-mail him. He then went on to say if it's an emergency, to definitely call his office.

So, I transferred my son's medical records over to him and he has been absolutely wonderful! I almost never call their office, because most of what I have are questions regarding medicine and his post-ictal state. He probably hears from me about once every 2-3 months. I send him an e-mail, and he responds usually within an hour or 2! I have never received such good service from any doctor EVER! I constantly thank him for his time. Sometimes, I'll send an e-mail on Friday night or Saturday, and I still get a reply before the weekend is over! And I don't even EXPECT an e-mail before Monday! I always update him with my son's condition. He gets an e-mail with every seizure, and how he's acting post-ictal. In the e-mail, I remind him what medicine he's on and the dose. I give him as much background as I can, and I wait for the next set of instructions. I actually feel like we're working as a team. It's really nice. We're going there on Monday for a standard appointment.

So, if anyone with an epileptic child is in the Boston area, let me know. I might share him with you .

[Blondie47]

Hi--

I would like to recommend this link: www.naec-epilepsy.org

National Association of Epilepsy Centers -- that's how I found ours -- about and hour away from our home.

Take Care

[Zoofemme]

I had a bad experience with Duke but mine was with the adult side of the house and I had an unsupportive neurologist; the pediatric care could be better and I will keep my fingers crossed for you that it is. THey have a heavy workload though because of their reputation so I would caution you to be prepared to WAIT for a long time. Frankly, I think that is part of the problem...they don't have adequate time for the patients they see.