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Extreme constant outer ear pain, and cheeks/nose
TPJHIL posted:
My 9 year old has had extreme outer ear pain for 2 months. It started with a few hours of redness and swelling (happening the day after she was complaining of sore throat/stomachache), and then swelling went mostly down and left her with severe pain. Over next month, she started getting mouth sores and the pain spread to her cheeks and nose. They are all so sensitive that you cannot even brush lightly against her, and it wakes her at night when she rolls onto either ear. She's had a few resurgences of the swelling, but mostly just unrelenting pain. Inside of ears looks fine. A couple weeks ago she fell and hit her kneecaps, and ever since hasn't been able to walk due to extreme pain in the peroneal nerve in her legs. We have seen all sorts of specialists, and have been told it's not polychondritis and that brain/face MRI look fine. They are guessing she had an infection when it started and her immune system went into overdrive and now nerves having trouble shutting off. Except, why then, is she still having days with little flare-ups? Last night she complained of sore throat/stomach ache and got another mouth sore (she's had several throughout this) and today cheek and ears slightly more swollen. Also, she's had some episodes of sudden tongue swelling, but these do respond to Benadryl whereas ear/face pain does not. I know you can't diagnose online, but we've seen the doctors and no one seems able to diagnose in person either, so hoping this will sound familiar to SOMEONE out there. She just started biofeedback on ears and it's been a flop. 5 minutes of slight pressure while bawling, and it only aggravated it rather than getting used to it. Any ideas? Thanks for reading.

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