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californiafamily

PANS - trying to find similar case (DD17)

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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.

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Our case is not the same as yours, but we were long term on probiotics (2+ years) before we discovered/proved that they were making our son's condition worse.  So, you might try cutting those out, especially if it is not a recent add.  We showed that well-known brands (not the kinds with strep) made him worse.

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Our DD onset was also at 14. But there was way less info at the time and pandas/pans was very rare. She was out of control her first 4 months upon her onset we had never heard of pandas. After a tip we noticed her throat was inflamed took her to see her PC and she was positive for strep. After she was put on antibiotics her rages stopped. Another two months they came back with multiple Bacteria infections. It took us four years to learn that her mitochondrial cells were deficient. And now supplemental support helps to keep her autoimmune system working better. She has flares but we have found that they mostly con-inside with her Periods, and any infections or viruses. We log everything so that we can look at her history accurately and make adjustments according. Without the history, it’s difficult not to make knee jerk reactions to symptoms.

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I also got pans when I was 14 and I always got strep infections, what worked great for me was having my tonsils out , I haven’t got strep since then 12 years ago. If she’s constantly catching things I think it would help. Adenoids removed too

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