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MMWG

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  1. Hi all- I need some suggestions from those of you who will not be surprised with all of the issues we are trying to balance as we make strategic decisions about treatments going forward. I just need helping thinking through all these considerations. In short--My son was diagnosed with PANDAS 4 years ago, and I would say at this point we have it relatively well managed. He is on preventative abx (cephalexin), and we homeschool--which I think may have been the single most helpful proactive strategy we have used to keep him well. Like many of our kids, he has anxiety issues as well as some adhd like issues, which are always present but significantly worse in exacerbation (and our clear sign of a reaction, along with joint pain). However, these days his reactions are fairly short lived--we up the abx, hunker down til he seems better, and go on with life. He is on medicine for his anxiety and adhd, which has been helpful and a good part of our plan. He has always suffered chronic constipation issues, and after seeing a pediatric GI, is on a regular combination of Miralax and Ex-Lax, which seems to work relatively well. However, most days he has a seriously distended belly, and we can't help but notice a real connection between his constipation/stomach issues and his mood. The better his stomach acts, the better his mood and behavior are. Last spring we saw a psychiatrist who specializes in treating mood through strengthening stomach health---the idea that most of our immune system is contained in our gut. She gave us some suggestions for nutritional supplements that she has had success with, and we have that on our list of options (but I hate introducing MORE things for him to take). The idea of gastro-neuro connection is intriguing to me, and I know in my heart this is a key to helping him feel as well as he possibly can. I want to focus on strengthening his stomach health. I think it may be a key to his mood regulation. Finally, this summer he had a bizarre bacterial infection in a wound in his leg (apparently from a cat bite? we had it cultured) and went on a nasty round of bactrim. it didn't cause a pandas reaction, but it didn't help his stomach at all, and the fact that he even contracted it scared me, as it tends to only be an issue for people with weakened immune systems--which i am guessing is due to the regular antibiotics he is on. Okay, so--here are the decisions I am wrestling with: 1) Introducing probiotics. We are going on 2.5 yrs on regular antibiotics, and every time i see his poor distended gut, i wonder what else we could be doing to help it. I went to the natural pharmacy and they recommended their "best" probiotic, but the strep strain in it freaked me out, even after the rep on the phone assured me it was the kind of strep they use to create kefir and such, not the nasty kind. the person at the store was very helpful but he looked overwhelmed with all of the things we were dealing with and i left without anything at all. I just read a great article about probiotics that have helped with mood issues, which brought me back to the gastro-neuro connection. What probiotics would be helpful with constipation and also help counter the impact of all these antibiotics? 2) We are on the fence about staying on the preventative antibiotics. I begged for them in the beginning, and we have been strep free for 2.5 yrs. But since we homeschool, I am wondering what the risk/benefit analyses are on staying on them--especially if it is making him succeptable to other infections like the one he had this summer. He just turned 8, so there's a lot of years ahead. Has anyone gone off the abx? It scares me, but I also don't want to do more harm than good. Sigh. This is probably too much for one post. Just not sure what to do. My pediatrician is wonderful, and we are managing the pandas together, but when i have asked about probiotics in the past he hasn't seemed particularly concerned or in favor. If anyone has input, I would welcome it. Just trying to process.
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