bigmighty Posted May 21, 2014 Report Share Posted May 21, 2014 DS 15 has been (mostly) off of antibiotics for four months and doing well. That being said, we notice that PANDAS symptoms slowly reemerge every so often (yes - usually coinciding with when someone we know has strep). Dilated pupils, talking too loud, standing too close, talking baby talk, general disinterest in interacting with people, becoming more rigid with respect to how tasks are accomplished, etc. Ibuprofen causes them to recede for a few hours then return. Ignore them for a couple of days and they get progressively worse - restricted food intake, etc. Throw three days of omnicef or augmentin at him and he's right back to doing well with no symptoms again for another month or so. Lately, I find that I'm always scrutinizing every little behavior or mannerism to see if it is the start of a downward spiral, making little notes to myself to see if a trend is beginning to emerge so we can start the antibiotics (and steroids if necessary) again. I would love for DS just to be "off of antibiotics." But in four months since he quit taking them daily, he has needed to go back on them for a few days three times already. Anyone have an opinion as to whether him taking antibiotics one day a week might be worthwhile in terms of preventing these blips? What do you all think? Is it best to just watch the symptoms reemerge (again and again and again) and treat each time things continue to decline? Or would it be worth trying one weekly (or maybe monthly?) dose of prophylactic antibiotics? The ups and downs are killing us here.... Link to comment Share on other sites More sharing options...
T_Anna Posted May 21, 2014 Report Share Posted May 21, 2014 Is he taking any supplements? Like olive leaf extract? Curcumin? Link to comment Share on other sites More sharing options...
bigmighty Posted May 21, 2014 Author Report Share Posted May 21, 2014 No. Had a serious allergic reaction to curcumin and also one to turmeric, at which point we sort of gave up on supplements. So olive leaf extract is sort of a natural antibiotic that might diminish the strep's ability to take hold? Link to comment Share on other sites More sharing options...
T_Anna Posted May 21, 2014 Report Share Posted May 21, 2014 That is my understanding, but I'm sure there are others more well versed. For viruses, Reishe is supposed to be good. Link to comment Share on other sites More sharing options...
bigmighty Posted May 21, 2014 Author Report Share Posted May 21, 2014 Thanks. Link to comment Share on other sites More sharing options...
qannie47 Posted May 22, 2014 Report Share Posted May 22, 2014 I have pondered the same question, it seems like our children are in a similar phase, thank goodness the healing phase, with more down then ups and quick reversal with abx use. My ds is still on abx 250 mg once daily, and doing fine. The curcumin is helping immensely with in between flares, so it is a shame that your child can not tolerate turmeric... If I were you, I might try once a week...if that is not sufficient, then twice a week...see what works. Perhaps google other natural supplements that stand up to clinical trials for anti-inflammatory and see how those work as well. As a Pandas parent, you are already used to being your own doctor to some extent, so trust your instincts. I am glad, based on your post that your child is doing so well!!! Blessings, q Link to comment Share on other sites More sharing options...
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