Advice about prophylaxis

[Lydiasmum]

I just don't know what to do about abx prophylaxis. Dd7 has been taking daily preventative for just over 2 years. She is mostly 95%, with a little more general anxiety than her peers but we get by and life is great compared to 2012 when pandas started. Do i risk weaning her off? Is it possible the abx themselves stop the 100% normality. We see minor flares with colds etc but not too obvious to others. She tolerates abx well but has had a couple of yeast infections. We only do abx, vitamin supps and watch her diet. She didnt fare well with probiotics. Ped is happy to keep prescribing and is supportive but his knowledge with pandas is limited and he is guided by me. Yikes! What to do. Worry about damage to her stomach. Advice anyone?

[MomWithOCDSon]

Have you tried specific strains of probiotics in order to see if there might be one or two she tolerates better than others? Sachromyces boulardi (sach , for instance, is a beneficial yeast that helps crowd out other problematic yeasts like candida; it is sold solo strain by Jarrow and in a pricier version at your local pharmacy as Florastor. Lactobillus GG (Culturelle) is another single-strain probiotic that's readily available and usually pretty well tolerated. That would be my primary concern about longer-term use of abx.

 

When my DS was on abx, we wound up keeping him on for nearly two full years because every time we took him off, some of his behaviors would return. In the end, we wound up weaning him off very slowly over the course of about 4 months . . . decreasing the dosage slightly and leaving it in place for several weeks before we decreased it again. Only when we could see that he could hold behaviorally did we figure it was the right time to continue to move forward with taking him off.

 

So long as she's eating well and tolerating the abx well now, I wouldn't think there'd be a whole lot of concerns regarding her stomach. But the health (or lack thereof) of her gut biome would concern me if she's not taking any probiotics. Without adequate flora there, she may have trouble absorbing nutrients, and the risk of c-difficile would seemingly increase, too, without probiotics and continued, prolonged use of abx. That's one of the biggest concerns voiced by some of the PANDAS professionals in various panel discussions.

 

And, finally, this is a tough time of year to remove the abx from your DS's arsenal, I would think. Strep season. Winter. Kids corralled indoors more than out because of the weather, sharing all their lovely germs.

 

Good luck to you!