Pediatric specialist in NY/NJ/CT/PA/MA

I’ve gone through the list recommendations provided by TEA, but could not find any pediatric physicians who know about EM. Any help would be so appreciated. Anywhere in New York, New Jersey, Massachusetts, Connecticut or Pennsylvania - or even other states. Thank you.

I’ll ask my doctor. She is an EM specialist at a research hospital in MA and seems to know who else specializes in EM.

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Thank you very much. So appreciated.

I realize that it is far away from where you live but your best bet is to take her to Mayo Clinic as they have a proper erythromelalgia clinic. They will also run all the necessary tests to rule out anything that would be causing secondary EM and they will do it all in a few days to a week. Their rapid and thorough process will provide a diagnosis and primary treatment plan to bring home to a local physician to carry out. Obtaining a proper diagnosis is one of the hardest steps in battling EM. Your daughter is young so if she does have EM there is a good chance it could be primary EM due to a sodium channel mutation which can be treated with mexiletine or other sodium channel blockers. If you do decide to go to Mayo Clinic I recommend going through the internal medicine department rather than the EM clinic. The wait time is much much shorter (months vs years) and they will provide all the necessary referrals from there and also will follow-up at the end of the ordeal to make sure that all your concerns were met.

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Thank you, Joeshmoe.

Joe, you always give great advice! Excellent post.

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