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Everything posted by mmw

  1. You are welcome! My daughter is actually on three abx, but what stopped the positive strep and tics was the cryptolepis. Her doctor is slowly weaning her off the abx. I would imagine the cryptolepis would help is he has any lingering strep issue. I am not sure what else it targets. It certainly wouldn't hurt to try. Yhe tincture is on amazon or Woodland Essence. It tastes terrible so we put it in large veggie caps and my daughter swallows them. Be quick about it, because the cryptolepis will melt the capsule in about 45 seconds or so. There is no making it ahead. I hope that helps!
  2. So I haven't been on this board in a long time. Why? Because my two PANDAS are doing so great it is not a "thing" anymore. But I wanted to come back and offer hope and encouragement because most people on the boards are struggling and the success stories are off the boards living their lives. I have a (now 18 year old) who began with PANDAS/aspergers symptoms as a toddler. It got very bad- tics, ocd, hallucinations when he had strep, and absolutely zero social skills or awareness. What we did: turned out we had major mold in our house and did complete mold remediation. He was on Aug
  3. When my son was young we thought he was very sensitive and had a difficult temperament. He eventually did get tics, hallucinations, you name it every time he had strep but before that he was just a VERY difficult child when it turned out he had strep. Like having to be physically pulled out of the car at preschool. He never quite seemed to know how to act either- lots of social issues. We treated with abx for years and did Brain Balance and all of his aspie symptoms went away. When he did have an episode of rage it turned out his younger sister had a simmering strep infection.
  4. I started with just 5-6 drops three times a day and increased. It dissolves a gelcap very quickly but I fill a 000 size (big one) up three times a day (about 75 drops) and give it to her quickly before the capsule dissolves. She is doing so much better and finally healing. I gave the echinacea every hour for two weeks as best I could. Now I give one dropper mixed with water 3 times per day. She is 13 and 85 pounds. The dose I am giving is on the high end but she had strep that no antibiotics could eradicate for 6-7 months. We are also doing HD IVIG for immune deficiency.
  5. My daughter continued to get strep (or it never went away) on Augmentin, Zithromax, and Rifampin together. We found an herb that knocked it out. Google Stephen Buhner (He is mostly a lyme doc) and strep. I followed his recommendations and my daughter is finally strep free. i am keeping her on the cryptolepis indefinitely.
  6. My daughter had the same thing. The nurse doing the infusion said it was pretty normal- something about the fluids pooling up. She had her walk around for a few minutes and it got better. It still hurt a little the next day but not much.
  7. I am usually more of a lurker and do not post much. But I believe I had Pandas as a child and have pretty bad OCD. I have had horrible exasperbations with both rifampin and clindamycin. The rifampin interacted with my OCD medicine but I had the exact same worsening with clindamycin and could find no interactions. I have had strep several times lately (I have two pandas kids) and was trying to knock it out. My dd who does not have OCD takes rifampin with no problem but was allergic to clindamycin. Right now we are having good luck with Keflex after Augmentin failed her. I can also take zithrom
  8. I sent my son, who is 11, two and a half years ago. He was borderline aspergers....no friends.....hard time with large motor skills. And tics. He had a lot of seemingly unrelated issues. Brain Balance changed his life. It was HARD and expensive, but one of the best decisions I've ever made. He is now free of tics (He had some recur last year for a few months and then they went away again) and is a very confident fifth grader with close friends. He now has the confidence and desire to play sports and is doing amazingly well in school. BB changed him so much it is hard to explain. We began
  9. Fixit, go to Dr. Susan Tanner at Spherios in Roswell Ga. She is knowledgeable about tics and PANDAS and will help you. Insist on seeing her.
  10. Hi, I don't post often but read a lot. I represent a company called Shaklee that sells high quality gluten free, children's vitamins with no artificial colors, flavors,etc. They are called "Incredivites". They are chewable. You can send me a message if interested and I will be happy to give you the link to my website and answer any qu. rgcamom
  11. Buster, I have a ds age 7 who I believe to be PANDAS. With every episode, [and sometimes with no symptoms] he has awoken at 4am saying he is seeing round colored lights. He had no headache, though. We just went to the neuro thinking it was seizures, but he said he had no explanation for it. This has happened since his first episode at age 3. He sees these things floating in his room and he is awake with his eyes open. it is frightening to him. rgcamom
  12. Hi, My son is doing well, especially after being off gluten for the past six months. It turns out he was severely reactive and we did not know until we took it away. He started having PANDAS episodes before age 3. They also occurred with sinus infections. He is on azith every 5 days. He has been on antibiotics for a good year. He still has minor symptoms, including occasional episodes that used to precede strep. It is a weird phenomenon where he wakes up during the night and sees lights and things in the dark. Even on antibiotics, he has one of these once every couple of months. We ar
  13. Hi, My son tested negative to the blood test at age 3. At almost age 7 after years of problems and no answers[in desperation], I took him off gluten and his lifelong major gi issues have resolved. He is a PANDAS kid, so not sure tics were affected, but hopefully the immune system is better. Yes, he had withdrawal! He was grouchy and couldn't stand for anyone to be around him for about five days. Then he was fine. This happened with later accidental exposures. I truly believe he is celiac, because he has all of the symptoms. I took him off gluten before he could be scoped, but keep in m
  14. Timeoutalready, I usually don't read this board [have minor tic issues with one of my kids so read on that one] but came across your post and want to give you some much needed hope. I am 38 years old and have had OCD since I was a kid. It got really bad in my early twenties, and I was miserable, as you are. I felt like I wanted to die, or at least be unconscious to get relief from my own thoughts! I have been on a variety of medications and I feel that luvox is the most effective. Zoloft works too, but you have to take a high dose. I take Luvox 300 mg/day and it makes my OCD practicall
  15. Hope, I am usually a "lurker" only, but your post compelled me to answer, as, unfortunately, I am all too familiar with the subject! My 6 year old son has [not officially diagnosed] PANDAS and some of his tics have occurred with severe sinus infections. I have a really good ENT who insisted we have our home checked for mold. Long story short, we did have mold which is believed to have contributed to his compromised immune system. We had mold remediation last summer, which took four weeks and unfortunately was very costly. It was almost $50,000. Ours is hopefully a more extreme case
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