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Everything posted by popcorn

  1. 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.
  2. 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.
  3. We had ours done at biocenter lab. http://www.riordanclinic.org/laboratory/
  4. There's a CM facebook group that has tons of good info: https://www.facebook.com/#!/groups/225663314116369/
  5. I'm happy to pm anyone who wants the info, just let me know.
  6. philamom, i'm pm-ing you right now.
  7. 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/
  8. 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.....you name it. Under PANDAs treatment we're seeing the layers peel away. It's a miracle to see him coming back to us. My middle son went undiagnosed for 3 years, and in my youngest, we probably would not have caught on if he'd been an only child. All members of our family have had T&A now (we did one surgery a month Jan - April, myself included--hubby already had his out as a child, so he got off lucky!), we're all on prophylactic antibiotics, are on the GFCF diet to keep down inflammation, and are taking lots of supplements to deal with methylation issues and address gut health. Anyway, for 2 of my boys, this has been enough to keep them at 90%. DS8 had a really bad summer, though--lots of phobias, anxiety, OCD, a couple of 2 hour crying/exorcist jags...all this while on antibiotics. We did biofilm treatment for us all, and that seemed to help a bit. We started biocidin and botanifuge, uncovered MARCONs and dealt with that, but he still wasn't himself. Then our doctor brought up IVIG, which is what kicked us into high, high gear. I started researching chelation and purchased a rife machine and an EMF shield for our home. Please, Lord, let him get better without an IVIG!!! About six months ago, I had bought some powdered camel's milk on amazon/ebay (I can't remember). I tried it and wasn't crazy about the taste (the instructions were in Dutch and I probably didn't get the proportions right). I figured I wouldn't be able to get my kids to drink it--they're very picky, so I didn't push it. Then a couple of weeks ago I was on a facebook group discussing Andy Cutler chelation, and some moms really encouraged me to try camels milk (along with chelation, which we are starting this weekend!). I ordered it frozen from a farm in Michigan. My kids absolutely LOVE it! We're not rich, so we split one pint between the three of them per day. My kids have been on it for almost 2 weeks now, and I cannot tell you the difference. DS8 doesn't need someone in the room with him to fall asleep anymore! His anxiety is gone. He can go upstairs on his own to look for something if he needs to. He will go in the garage to look for stuff (never used to do that b/c of his fear of spiders). He's happy at school. Homework used to be such a huge source of stress for him, yesterday he did it in a few minutes (on his own with the door closed!)--this kid doesn't even close the shower door, that's how much he hates/hated closed doors. He used to have such a short fuse, and now he's the most laid back, easygoing guy around. DS11 is a changed boy. At recess, he used to wander the perimeter of the playground with his hood on. Yesterday I went to school and he was playing soccer with other kids and high-fiving them. When the bell rang, it took him awhile to get in line because he was so busy talking to someone.(!!!) DS6 is holding strong too. It's harder to gauge him, b/c he's been making the transition from this sweet nurturing preschool to all day kdg. with lots of kids and big adjustments, and with him we're dealing with some yeast, so when we get that under control I'm excited to see what unfolds. I'm kicking myself for not trying it sooner--if I'd had my kids on CM, we could have had a fantastic summer. Oh well. If anyone has been on the fence about trying CM, maybe this will encourage you. It's kind of expensive (around $10/pint), which is what held me back. But it's all in the way you frame it. If buying your kid a Jamba juice every day would keep their PANDAs symptoms at bay, would you do it? At 1/3 of a pint per day, CM is actually cheaper. Hugs to you all! Thanks for reading.
  9. 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.
  10. 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.
  11. I have 3 boys. All have PANDAs @ varying levels of severity. Mercifully, they tend not to flare all at the exact same time.
  12. I came across this blog post on parasites, specifically the helminth, as being a culprit in chronic PANDAS. http://grayson-youarewhatyoueat.blogspot.com/2012/08/parasites-root-of-all-evil.html I found it fascinating as a new avenue to pursue for our kiddos.
  13. We use HMF powder by seroyal. It does need refrigeration, but my kids love it. The taste is pretty nice (I take it too!) --it tastes a little bit like milk powder with sugar in it. They look forward to it every night.
  14. I'm interested in what people have to say about this, also. We found out we are MTHFR mutants, so are taking methylB12 and methylfolate supps. Multivitamins tend to have folic acid and cyanoB12 in them, so we have to stay away from those. Also, we're taking supps for pyroluria, so we don't want to take in more zinc or B6. Sigh. I give my kiddos colloidal minerals, make sure they get plenty of fruit, veggies and protein, and other than that, hope and pray they're getting what they need without a multi. Juice plus seems like it would be a pretty good back-up.
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