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  1. I would love to get the info on where you order this milk if you would not mind. My seven year old son has PANDAS and we are doing supplements and oral baygam to build up his immune system. It sounds like this would be a nice addition.



  2. GUTpro has been formulated for kids with PANDAS (although they were on backorder when I tried to order earlier this week). http://organic3.com/gutpro/ In the meantime, I've ordered D-Lactate Free http://www.customprobiotics.com/custom-probiotics-d-lactate.htm It's expensive, but each teeny tiny spoonful contains 26 billion CFUs, so it ought to last us a long time. It contains no strep thermophilus.
  3. Same issue here. I go to bed around midnight and give my kids probiotics then. I mix the probiotic powder in a cup of water, make the sleeping kiddos sit up in bed and drink it. It's kinda cute, and they always have sweet things they say to me when they're half-asleep.
  4. We had ours done at biocenter lab. http://www.riordanclinic.org/laboratory/
  5. Would love to order some of this milk with you. Let me know what would work the best. I live in Redmond so close to you.,

    Thanks so much!

  6. There's a CM facebook group that has tons of good info: https://www.facebook.com/#!/groups/225663314116369/
  7. I'm happy to pm anyone who wants the info, just let me know.
  8. philamom, i'm pm-ing you right now.
  9. Camel's milk = the poor man's IVIG. I'm not even going to pretend to understand how it works beyond that. Here are some links that explain: http://camelmilkforhealth.com/admin/uploads/pubs/Camel-milk-autoimmunity.pdf http://grayson-youarewhatyoueat.blogspot.com/2011/05/why-does-camel-milk-work.html http://nourishinghope.com/2011/11/camel-milk-healing-or-hype/
  10. I haven't formally introduced myself. I've been quite the lurker and have gotten so much information from you folks here. I am so grateful. I don't often chime in because most here seem to know so much, and I feel I don't have much to add to the wealth of knowledge here. I'm a mom to three boys (6, 8, 11) with PANDAs--all at varying levels of severity. My oldest has had it probably since toddlerhood, but it went undiagnosed for 8 years. We don't know what his baseline is. Before the PANDAs dx, he was dx'ed with aspergers, ADD, dyspraxia, disorder of written expression, sensory issues.
  11. Last year we used muco coccinum and it worked well for us, so we'll be using it again. According to the studies, it's 88% effective for preventing the flu. Our whole family was flu-free last winter. It tastes like little sugar pills, so it's a nice option for people like us who are freaked out by flu shots.
  12. We did neurofeedback, but it was before we knew we were dealing with PANDAS. Couldn't tell that it did much of anything. I've heard that it works better when people are not in exacerbation. go figure.
  13. I have 3 boys. All have PANDAs @ varying levels of severity. Mercifully, they tend not to flare all at the exact same time.
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