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Hi, It appears both daughters have PANS/PANDAS, after seeing many conventional specialists, and several believing PANS or PANDAS is the correct diagnosis. Some symptoms I don't see frequently in the literature, though, and I wonder if they are related. Abdominal pain. Several local doctors say they see that a lot in PANDAS patients. Why isn't it listed as symptom? That is the most-complained about symptom for both kids (they don't complain about the OCD (both), tic (one), anorexia (one) - that's all me!). We wasted a lot of time/energy with GI tests and procedures that showed nothing. Leg pain. Huh? Why? Is this related? Sometimes it flares at the same time as the stomach pain. Joint hypermobility and/or Ehlers Danlos syndrome. Is this co-morbid? Loose ligaments as symptom? EDS kids more vulnerable to PANS? I'm just wondering how many problems I have on my hands... Thanks for any help you can give!
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Hi I am new to the group and hoping someone can possibly shed some light on my daughter's condition. My 10 yo daughter had a strep infection about a year and a half ago that went undetected for 3 months until it was finally diagnosed, she did not have a sore throat so it didn't occur to the doctor to do a throat culture. She was having stomach pain and cyclical vomiting. We finally went to a different doctor who ran a test and once we treated her she was fine. Fast forward to August 2018 and she had a three week bout with vomiting, diarrhea and abdominal pain. I had them run a throat culture, but it came back negative. They did discover she had a TSH (thyroid) level of 37 and so we thought it was an endocrine issue. She tested positive for thyroid antibodies and was diagnosed with Hashimoto's. Here is where it gets weird. She has been having constant abdominal pain and every test (full GI work up, endicrine work up, endoscopy, tons of blood tests) that they have run at the children's hospital has come up with perfect results. I finally convinced my regular doctor to run an ASO test and it came back at 250. So, they started her on a 14 day course of Keflex. We are in day 5 and I do think her sensitivity to light and sound has improved, her appetite seems to have improved and so has the number of tics she has been having, but her abdominal pain has not improved at all. I almost forgot to mention and now her thyroid levels have returned to normal and she no longer has any thyroid antibodies. Does anyone have a similar story and can someone give me some hope that she can get some relief soon? The poor thing has had constant abdominal pain for 4 months now and nothing makes her feel better. And, I am worried she is never going to be normal again. Thoughts and advice welcome. Thanks