I'm trying to find a similar case to our daughter's to understand how it progressed and what might have worked. Can you please comment or message me. Desperate to find answers as we continue the journey.
Our DD17 (almost 18), developed acute onset at the age of 14 (almost 15)...3 years now, although we believe she was primed for it at 7 when she had strep and mono. It wasn't until May of last year we figure out it was PANS. She has recurring and remitting flare-ups which seem to be mostly triggered by viruses. During flare-ups which last 15-21 days she has severe anxiety, obsessions, restricted eating, restricted hygiene, and severe cognitive issues making her completely incapacitated. But after the flare subsides she's back to school, driving, working, like a normal teenager. The longest she's gone w/out a flare-up is 6 weeks, but typically they are every 3-4 weeks with no specific pattern. We've done 3 HD IVIG's and are getting ready to start bi-weekly low-dose SubQ IVIG. She's on antibiotics, antivirals, anti-yeast, probiotics, LDN, etc...yet nothing has stopped this from occurring. She also has very low IgA, igM, IgG (+ subclasses) which points also to CVID. She's had MRI's, ultrasounds, and about every blood test you could imagine.
If this sounds like your case or have an opinion let me know. Thanks.
