At my wits end!!

[Momonamission81]

My daughter (8yo) was diagnosed with PFAPA 3 years ago. She had a t&a and the symptoms went away. About a year ago she started complaining with stomach pain. We had tons of tests done and the only thing I was told was she had reflux. Well, the medicines did nothing. I started her on probiotics and about 6 weeks later she stopped complaining. I took her off the probiotics 6-8 weeks after they started working. She was fine for 4 months. Now the stomach pain is back with a vengeance leaving her nauseous and feeling weak. We again had tests done everything came back normal. I also have started her back on the probiotics. PFAPA is an immune disorder the large part of your immune system is in your intestines yet the doctor totally dismissed me when I told him that even though I act diagnosed her myself! She is also complaining of constant headaches and scalp sensitivity. She doesn't have dandruff and her scalp looks normal.

[Momonamission81]

I honestly stopped to see if that was what helped or if it was a coincidence. Thanks so much!  I will bring that up to her gastroenterologist Wednesday.

[Heiferly]

Scalp sensitivity is a common symptom of migraine-type headaches. There can even be "silent migraines" where you get all the symptoms EXCEPT the actual headache. I would recommend calling your closest children's hospital to ask for a referral to a headache specialist.

There's a link on this PFAPA information page to find a pediatric rheumatologist near you:

https://www.rheumatology.org/Practice/Clinical/Patients/Diseases_And_Conditions/Periodic_Fever,_Aphthous_Stomatitis,_Pharyngitis,_Adenitis_Syndrome_%28PFAPA%29_%28Juvenile%29/

Why did you stop the probiotics? Is your doctor okay with you trying those again to see if it helps her symptoms?

Also, when you see a headache specialist, be sure to ask if the stomach pain could be related to her headaches. There is a form of migraine that can cause stomach upset and pain. So that's another possibility.

I hope you find answers soon, H.

[CRSeaside]

Drs can be insensitive dolts. Can you just continue doing what you've done in the past? I have a different rare disorder. After wasting time with Drs I ended up on the university level teaching hospitals.
Maybe there is a school in the US where they study your child's disorder and you can get more recommendations.