trintiybella Posted July 8, 2013 Report Share Posted July 8, 2013 I need a nuerologist that Is going to be open mined and listen to me?? Any suggestions for Norhtern NJ?? Thanks Link to comment Share on other sites More sharing options...
beeskneesmommy Posted July 8, 2013 Report Share Posted July 8, 2013 http://www.site.neurokidsr.us/ Link to comment Share on other sites More sharing options...
trintiybella Posted July 9, 2013 Author Report Share Posted July 9, 2013 We see him. Do you know if he able to give script for EEG? Link to comment Share on other sites More sharing options...
PowPow Posted July 9, 2013 Report Share Posted July 9, 2013 Can you travel to MD? I strongly suggest you see Dr Latimer in MD. I am going to pm you more later,.on my phone now and cannot type well. Link to comment Share on other sites More sharing options...
trintiybella Posted July 9, 2013 Author Report Share Posted July 9, 2013 (edited) Is that Elizabeth Latimar?Just made an appointment with her. Hope that's who you mean. Edited July 9, 2013 by trintiybella Link to comment Share on other sites More sharing options...
PowPow Posted July 9, 2013 Report Share Posted July 9, 2013 Yes! Exactly who I mean. So glad. Is it a long wait? Link to comment Share on other sites More sharing options...
trintiybella Posted July 9, 2013 Author Report Share Posted July 9, 2013 Got one for August 28th. Thanks for the lead. I'll keep you posted. Link to comment Share on other sites More sharing options...
PowPow Posted July 9, 2013 Report Share Posted July 9, 2013 Excellent. Hold tight if you can until then. make a organized timeline of her illness, labs, symptoms, meds, as best as you can since onset. Do you have videos or photos of her worst or her good before onset? This stuff is invaluable to the docs. Link to comment Share on other sites More sharing options...
trintiybella Posted July 10, 2013 Author Report Share Posted July 10, 2013 I have organized notes (believe it or not) LOL....she has been sick since she's been born. Whatever she has, she got from me. I do have similar symptoms but as debilating as she has. Thanks again! Link to comment Share on other sites More sharing options...
ChrissyD Posted July 11, 2013 Report Share Posted July 11, 2013 Northern NJ is a hard place to find a competent neurologist to treat PANDAS. Besides Dr. T there are many naysayers, in large part due to Dr. Roger Kurlan's influence through the Atlantic Health System (Overlook and Morristown hospitals). Kurlan has convinced the large majority of neurologists in practice that PANDAS is a unlikely hypothesis. I've heard nightmares about evaluations being done at Morristown and the things doctors there are telling families. Conversion disorder comes up a lot, as does 'Voo Doo' medicine. They basically think of Dr. T as a failed neurologist who lost his hospital privileges. That's how they discredit him. Dr. L is on our team and we love her. But she is full steam ahead...very aggressive with IVIG (which is what we needed at the time) and doesn't do a lot of testing for co-infections other than strep and mycoP. Will give long-term antibiotics if needed. She did, however, the best and most thorough neurologic exam on my son that revealed many choreiform movements. Please keep us posted and good luck. Link to comment Share on other sites More sharing options...
trintiybella Posted July 11, 2013 Author Report Share Posted July 11, 2013 What type of exam did she do other thank EEG's? Thank you Link to comment Share on other sites More sharing options...
ChrissyD Posted July 11, 2013 Report Share Posted July 11, 2013 Just a detailed neurologic exam. Already had a ton of blood work from an immunologist prior to seeing her. I don't know why she would need to do an EEG on my son but every kid is different. My son was a classic, abrupt onset, strep triggered presentation w/ choreiform movements & TICS. No seizures. Link to comment Share on other sites More sharing options...
ChrissyD Posted July 11, 2013 Report Share Posted July 11, 2013 There is someone in my support group that took her son to see Dr Rina Goldberg at St Barnabus after Dr T's genetic testing revealed the possibility of a nocturnal seizure disorder. She saw him and admitted him for an overnight EEG study. I haven't had the chance to follow up with her to hear more about their experience. I know that he was so bad while in hospital they gave him high dose IVIG but don't know who ordered it, etc. or how it went. They seem to be the only hospital in the area open to the idea of PANDAS. Link to comment Share on other sites More sharing options...
trintiybella Posted July 11, 2013 Author Report Share Posted July 11, 2013 You can tell if there's nocturnal seizures from genetic testing? I thought that would be detected by 24 hour EEG. We're doing the genetic testing with Dr. T. Can't wait for results! Link to comment Share on other sites More sharing options...
ChrissyD Posted July 11, 2013 Report Share Posted July 11, 2013 No I think the generic testing only indicated it might be a possibility which is why they did overnight EEG to determine. Link to comment Share on other sites More sharing options...
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