Anyone know of a good FPIES doctor in Suffolk County?

My son and I have been to many doctors with our symptoms and none have ever suggested FPIES, but it sounds exactly like what we have. Actually, we've been made fun of by doctors and screamed at. Finally found an allergist who believed what was going on, though she never came up with FPIES, but she's retired. My son needed to go on a medication for another issue and the doctor wanted an allergist to review the medication for potential allergens first. The new allergist we tried made us feel like idiots, screamed at us, and told my son to eat everything no matter how sick it made him. Obviously we didn't go back. My son's is controlled as long as he doesn't get a trace of anything he has a problem with, but mine is getting so much worse--there is something new happening. After the last experience, I've been trying to figure out what's causing it by myself, but I'd really like to get this diagnosed by a doctor. I happened across FPIES when I was looking for symptoms of GI anaphylaxis yesterday, and gosh, this is IT!! I just don't want to see a doctor that will belittle me and who I have to argue with! There's too much stress already. Thanks!

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First of all, I am so sorry to hear that both you and your son are going through this. It is such a difficult road trying to figure out safe foods and the lack of supportive medical care can complicate things even more so. I am hoping there are some local recommendations for you from others, but based on your region of the US, the first doctor that came to my mind was Dr. J in New Brunswick, NJ (I know it is a bit of a hike-- unfortunately, many of us have to travel a bit to find docs) https://www.saintpetershcs.com...ian/Harumi-Jyonouchi This is her link to connect with her office-- not sure if she is seeing new patients or not, but I would reach out and explain your situation if I were you. The other suggesting is to visit the FPIES FOundation's medical provider search to see what other options might be nearby to you. And when you call, do not hesitate to ask questions! Before we found my daughters' medical team (they see the same team together), I called several clinics and pseudo interviewed the providers staff to get a bit of info before heading over. Here is the link to the medical provider finder : http://fpiesfoundation.org/fin...healthcare-provider/ Good luck and I hope you and your son are able to move forward and find better care and support!

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