JakeTyler
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Posts posted by JakeTyler
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But the NYT article about autoimmune firestorm uses the word "CURE" when they mention this facility... That's what I want!
Obviously we all want a cure, I don't believe one currently exists.
The immunotherapy they mention (steroids, IVIG, antibiotics, and plasmapheresis) have all shown to help with flares but none are a lifetime "cure".
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This article is about celiac and gluten and the gut brain connection. Does this mean PANDAS kids may have gluten intolerance? What is everyone's experience with this? Do many of you go that route with diets? Did it make any changes for the better in regards to PANDAS symptoms?
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I've had two Pandas docs strongly advise against getting the Pneumovax vaccine. My son's tests also came back that the original pneumovax didn't take for like 20 out of 23. The pediatrician wanted to re-vaccinate but we refused. Dr. K told me the worst episode of Pandas he's treated was onset by a kid with Pandas getting this vaccine. It took many months and several rounds of IVIG to bring him out of it.
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Our son's situation sounds similar to yours. His first episode was at about 4 1/2 and it was caused by strep. After the initial episode he had future episodes with coxsackie (hand, foot, & mouth), mono, walking pneumonia etc...
His primary symptoms are always tics. We've only seen OCD once. Often when he gets a viral or bacterial infection the first way we know he is sick is because the tics start. When he gets strep he never gets a sore throat, but he has tics. Once the infection has passed the tics subside.
We are 3 years into this and he is on proph. Augmentin which works pretty well for him. For the most part he is symptom free about 9 months a year, then the winter comes and a virus wipes him out for a month or two..
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I just wanted to bump this topic. My son started to flare last week, but his PANDAS symptoms disappeared over the weekend. He still had a slight fever and sore throat today so we took him in and he tested positive for strep.
Does this indicate his prophalactic ABX aren't strong enough? Any advice on what to do going forward to prevent strep infections? He's on Augmentin once daily now.
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IVIG gave me my 7 daughter back. I would do it again in a heartbeat.
Can you elaborate? Did it pull her out of a big flare, or did it prevent future flares from occuring?
My question on IVIG is will it prevent future flares? We seem to be able to pull out of them now within a few weeks with ABX, but if there was a way to prevent them altogether we'd jump at it.
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I'm a little confused on IVIG. Is it supposed to reset the immune response and be a cure, or just a way out of a bad exacerbation?
Weird rash/ virus causing flare
in PANS / PANDAS (Lyme included)
Posted · Edited by jaketyler
Looking for some guidance here. Kiddo has been relatively episode free for the better part of the last two years since getting on daily abx. About 6 weeks ago he and his sister came down with a weird rash on their faces that later turned into cold symptoms. Pandas symptoms, tics and irratability returned. We saw pediatrician who said it was likely an unidentifed virus and it should clear on its own in a week or so. Rash and cold did dissipate but tics remained. Fast forward 6 weeks and he and his sister came down with a new rash across their chests and necks. Tics and irratibility ramped way up.
We consulted with Pandas doc and pediatrician, both said it was a new virus and to wait it out again,
Anyone have advice here. Nobody seems to want to do a blood test or prescribe any antivirals. Hate sitting and watching him regress and suffer with no direction on how to help. Any advice for dealing with viral infections?