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IVIG questions

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I keep hearing that IVIG may not be as useful as people once believed. Though I've just read a couple of posts here where parents whose children are getting monthly IVIG infusion has made a big difference in their kids' return to health--maybe even been the game changer.

I have a couple of questions.

I am in MA and as far as I know, no doctors here who prescribe IVIG for PANS/PANDAS. Anyone know any doctors in MA who order IVIG?

And, does there seem to be a certain profile of the child's symptoms that does better/best on IVIG? PANS/Pandas only? We are also dealing with mold toxicity, and no improvement so far with the first-line mold treatments. And no relief using long-term antibiotics, which we've stopped for the moment. Also, DS (age 15) had a bad reaction to a prednisone burst--it worsened symptoms.

Thanks for sharing any experience you have with IVIG.

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DS19 has had 5 HD IVIg courses since 2015. In about 3 of the 5 he responded really well in terms of symptom abatement (OCD, screaming tics, anxiety, brain fog, etc.). We tried 2 monthly LD courses and all it did was stimulate his dysfunctional immune system and he "flared." He also "flared" after one of the HD courses b/c he was sick going into it. He has PANS dx but also other dev. disability. 

Good news is after taking him off Augmentin after 4 yrs. has not caused a relapse at all. 

Also - a steroid burst helped during one really bad flare, but made things worse the last time we tried.

Edited by tj21
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Hi, I can't speak to IVIG as we didn't go that route, but I'm in MA too, in the western part of the state.

My daughter's primary PANS doc is in NY, but her allergist/immunologist is located in Northampton, MA, and has said that he is one of two doctors who does IVIG (I'm not sure if he meant the area or the state?). We have consulted with him throughout her PANS treatment and he does have some experience with PANS/PANDAS kids. While he will say he is not an expert treating PANS/PANDAS, he is extremely smart and one of those doctors who likes to figure things out.

Her allergist's name is Dr. Bayuk, and he is located in Northampton, MA.

Best of luck and sending you good thoughts on your journey to helping your son.

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