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How long do most kid with PANS stay on antibiotics? Is 8 weeks too long or damaging to the gut health or is it the best strategy to be aggressive? Is a combination the way to go? My child is on 5mg Azithromyin in the AM and 5mg Augmentin in the evening. How long on antibiotics do all symptoms remit the most? Can symptoms still remit while on prophylaxes after 8 weeks of full strength antibiotics? Thank you!! 

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My son was on antibiotics for several years. He was treated with IVIG and put on prophylactic antibiotics for three years I think. He took probiotics also and his stomach was fine the whole time. I was more worried about what strep exposure would do than about the effects of the antibiotics. I believe there is some evidence that some antibiotics (Augmenting) can reduce anxiety as well. 

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My DD did not tolerate abx very well so we stopped it after about 6 weeks and went natural.  I found the homeopathic route to help her most.

As an aside, if probiotics are mentioned, I would refer you to Dr. Ohirra's fermented Pre, Pro, and Postbiotics in a single capsule.  DD says it is great stuff!  It is actually meant to reseed the microbiome, and is widely used for Crohns and colitis.

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I’m scared to say yes, but....yes. Since last May he’s been doing really, really well. A few bumps along the way, but nothing major. He talks to me about what it was like when he was so sick —the intrusive thoughts and beliefs he had—it’s enough to make me cry, but he seems to be processing it all.

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My son seems to have recovered, but like Cmac I am reluctant to conclude this is it. He had symptoms since he was very little, they became very serious when he was 11. He was then diagnosed and put on antibiotics, had a tonsillectomy,  received IVIG, and stayed on antibiotics for several years. He is now 16 and doing well.

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Pennmom—yes, his intrusive thoughts were the last thing to go. He had hallucinations (he saw werewolves all over the place), ocd—lots and lots of rituals like running in front of the back door a certain number of times before he could enter the house, extreme separation anxiety and extreme anxiety in general, and emotional lability. Those symptoms began to ease up gradually between 3-7 months from the time of the first onset in August 2018.

The hallucinations and accompanying hand movements were the first clue that something was terribly wrong in August 2018. Looking back it seemed like there were some minor signs from earlier in the summer, too. I had never heard of PANS/PANDAS before all this.

As for your original question I think we started to see some improvement after about 8 weeks on a certain combo of antibiotics (biaxin and augmentin) and then dr switched up antibiotics to get the myco p. Although no two kids’ path to recovery is the same it does seem like it takes awhile to get better. (I had such high hopes for our first 10 day course of amoxicillin that the pediatrician put him on when she discovered the strep). 

Hang in there—it’s going to get better.  

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