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Day 9 on abx and my son's tics are almost completely gone. No OCD or ADHD behaviors either. We haven't had him this good since before he was diagnosed. I don't think I can be more convinced that he ha

And the antibiotic that finally gives some resolution is a clue as well. If strep abx aren't working after some time, look for different infection(s) that may be causing the PANS/PANDAS reaction. DD

mdmom - great advice. We found a leading PANDAS specialist in my area Dr. Fier that is only $250/hr! I will ask him to expore co-infections and immune function.   our holistic MD (based on extensive

WOW!! Thats amazing! I think the proof is in the pudding! Im not sure what more the titres are going to prove though given the fact that you already found the positive strep infection. High titres certainly won't hurt, and might prove hes not a carrier, however he already had at least one negative swab in the recent past.

 

I suppose if he responds well to abx that will be the defining factor. I wish our doc would give us IV IG just like that!

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Amoxi is not particularly effective on strep. My friend with 3 kids, no pandas, cannot clear strep in them on amoxi. Your description sounds exactly like PANDAS/PANS. Rising titers of strep does not prove PANDAS. It shows where your child is infection wise. A percentage of the population never even have titers to strep when infected. My son has never had strep titers or a positive throat culture. He has PANS rather than PANDAS. my son has been on antibiotics for 3 yrs without a break. We have addressed methylation and other things but those don't get him close to 100% functioning. In flares, the recommendation is 30 days of treatment with abx and prophylactic dosing until post college if living in a dorm type setting.

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One other thing I want to mention. With TS, starting a new school and a new grade are HUGE triggers for tics. Many kids with TS report waxing symptoms when school starts. For my son, his tics actually remained very low through the first day of school and all the way up till the 1st week in November. Again, another indicator that this this not the typical garden variety TS.

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What a great post. Thank you! it really explains a lot of things and puts into perspective how elusive this "disorder" really can be.

 

To me, a sharp increase in tics associated with a STREP infection and then subsequent resolution in response to abx is proof enough that we are dealing with a PANDAS kid.

 

Today is day 4 on abx and slowly, very very, gradually, we are seeing improvement. Nothing drastic yet but so far its been better than yesterday. I'm forging ahead....

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