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Everything posted by bobh

  1. Ahhh - I found it now. Wow - lots of different stuff (14 not including 3 "others"), but not saying how much of any of them per serving. Lots of work to look up each one, and for my kid, I would also worry that the chances of reacting to any particular ingredient are higher since there are so many. I doubt there is any study of this particular mix, including on consumerlab.com I would also tend to take the 27 positive reviews with a grain of salt. Let us know what you decide, and how it goes!
  2. We haven't used this product. When I look it up at bioraykids.com, it doesn't actually list the detailed ingredients. Have you found active ingredients listed elsewhere? Not being able to see the ingredients makes it a non-starter for me - can't research its effects for supporting evidence, or look it up on consumerlab.com for safety, etc. I personally don't have 100% trust of what a supplement bottle says it does - too many suspicious claims in the supplement industry.
  3. Because of its expense (and we are in Canada - it was more difficult to get it for a while), we never did it even once. My own argument was that the specialists that we had easiest access to understood and were willing to recognize PANS without requiring the panel, and the panel wouldn't have convinced the other doctors that didn't believe in PANDAS/PANS. Don't mean to knock the Cunningham panel - I would love to have it, its just the circumstances. I am thinking that very few get the Cunningham panel twice, but the most likely group (besides the rich) might be some of the hundreds of people that they did for free (in one of the studies that used Cunningham panel tests). You might get somewhere with your question if you asked them directly if anyone had it twice, and whether anyone felt it was worth it. Their bias might be that "yes it was", but with a few good questions ("what did the 2nd panel cause them to do that they wouldn't have done otherwise"), you might be able to find out if it really was worth it. I do believe they were thinking of expanding it at one point, but haven't checked back as to whether they ever did. Were your results strong and conclusive?
  4. I do agree with not sending her to school - it would definitely be trauma. On your question: " Do I sit next to her and do everything with her all day?? Or let her do less work/no work?" When our son dropped violin lessons, schoolwork (like MomWithOCDSon, he kept erasing until there were holes in the paper), stopped going outside, there was no way he would have been able to tolerate sitting next to him and doing everything with him all day. Doing less work (and modified work), and sometimes no work, was all he could handle. On the "is this behavioral, or the disorder" question: it seems everyone with this disorder struggles with this question. There is a sense in which, of course, everything is behavioral because it is all expressed as behavior. The disorder is inextricably tied up with feelings, wants, needs, emotions. After seeing my really good kid regress so suddenly and so deeply, I could not blame his intent as if he was choosing to be stubborn. I really do feel that cutting the child some slack, and erring on the side of "its the disorder" is the appropriate way to go. They can't help it.
  5. How is it now (5 days later)? Your LLMD's thoughts seems sound to me. Many parents decide to ease back on the abx just to make the herx more bearable, but the downside is that the the lower level may not be getting at the stuff that the higher level is getting. For my kid, I am really wary about mixing in at one time too much stuff that I haven't tried before (trying and knowing that my child doesn't react badly to it, that is). With painstaking experiments (going on and off and tracking symptoms), we determined that most probiotics make (and keep) our child worse (i.e. even after when he has been on them for an extended time - not a short-term herx). It is really disheartening to find out that something we gave made them worse, but worse than that, is not even knowing it.
  6. I would agree that the symptoms you describe after 2 days of abx don't seem like herx, at least not like our son has experienced. It would like to think that the gut would not be so weak as to let abx cause such a problem in just 2 days. But I don't know. If I had these symptoms, I would check out some of the websites that list cross-reactions with any other drugs or supplements that you are taking. Here are some (they are not all the same): https://www.drugs.com/drug_interactions.html http://www.webmd.com/interaction-checker/default.htmhttp://www.rxlist.com/drug-interaction-checker.htm One of my biggest past mistakes is underestimating the power of supplements - at least some of them. If one of these checkers doesn't recognize a supplement that you are on, try different names and/or another checker.
  7. It certainly sounds like it to me. Some of the other symptoms you describe are OCD in my opinion, even though it doesn't appear obvious (i.e. "constantly ask me all day if I would ever get arrested"). That and the anxiety plus chorea would qualify him for either PANDAS (since he had strep) or PANS. Check out the definitions here: http://www.pandasnetwork.org/understanding-pandaspans/what-is-pandas/ Note that chorea qualifies as abnormal motor movements.
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