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Everything posted by KLW

  1. My gut is definitely telling me we need to try the Augmentin XR before going IVIg.
  2. As I aggressively pursue a local, insurance-friendly provider to order IVIg for DS (12yo), I couldn't help but think that we really haven't fully vetted all antibiotic options. History: When he was five we began naturopath which included supplements with natural antibacterial properties and then in Jan 2013 I switched to a medical route due to a positive H.Pylori test. In the midst of multiple rounds of H.Pylori protocol (amoxicillin, clarithromycin and prevacid) we found that when he finished a round he could not be off the antibiotics without very troublesome behaviors. We then began usi
  3. Thank you Nancy - I'm trying not to let my baby boy see me cry! I'm so sorry you went through it, too. I can totally relate. I'm in it for the long haul and whatever he needs he will get. I feel he was at his sickest around age 4-5, then we brought in naturopath that really, really improved his and our quality of life. At the five year mark I just felt like we had hit an insurmountable brick wall and Yasko protocol wasn't going to move us past that point. I still have a lot of the supplements and vitamins in place and they will remain there. The hard part is the constant bacterial a
  4. Oh, sorry, my last response was responding to Mom23boys - the subsequent post from Nancy came while I was typing
  5. I wonder that, too. I'm having to learn and catch up on my own in order to understand the recommendations being made by the two doctors that I'm juggling (one is the integrative doc that first suggested it may be PANDAS and then I took the step further to see Dr. L). As I read more I wonder about some of the decisions that have been made in the past year and a half, very specifically why the Atlanta doc has us doing weekly subQ Ig since Jan and then why Dr. L has allowed it to continue since May when I understand frequent low dose Ig is rather contraindicated and certainly not going to treat
  6. No local support group. No autism diagnosis (which I believe is correct). Proper diet and supplementation is already established through years on Yasko and use of integrative doctors. I'll look at TACA, never heard of it. Thanks.
  7. Hi, I've only posted a couple of times as I'm new here and only recently DS dx with PANDAS by Dr. Latimer. He is 12.5 years old and while the dx has only come very recently he has been sick basically his whole life. I know no one here has a crystal ball and everyone is different, but is there anyone here with a successful story of a child who had to live with PANDAS for as many years as my DS and was able to be healed at least to the point where it was manageable? He probably had first autoimmune reaction as an infant and there was no way to see that "dramatic change" in personality. I'
  8. Hi, I know of something you could read that may help make more sense of your genetics and may help you sort out which direction you should go with testing and supplementation. I'm an alum of Dr. Amy Yasko's protocol having done that for my son five solid years. I'm positive that helped save him from what could have been a rather miserable life before finally recently learning that PANDAS is the correct diagnosis. One of her books is available free for download at http://www.dramyyasko.com/ then find the little blue link at the bottom of the page that says, "Get the Book". It will download
  9. I don't really have an answer to your question, but I was able to get my DS off of diflucan by instead using a product called Biocidin to treat candida/yeast. It is now in my category of "best stuff ever".
  10. Hi, new here. Twelve yo DS recently dx with PANDAS by Dr. Latimer. He fits into two subsets - 1) he has been sick since day one (not a sudden dramatic change after an infection/exposure) and 2) he is immunoglobulin deficient. I've been searching for answers his entire life and finally got them after twelve years. Thankfully, he has been treated somewhat consistently with treatment for PANDAS...we just didn't know what we were treating and it wasn't quite enough. I believe it kept him from being in much worse shape than he is. Now we are on the right track. We've been doing weekly sub
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