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Need Nuerologist in Northern NJ


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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.

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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.

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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.

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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.

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