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Cmac last won the day on September 12 2019

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  1. I'm not sure--hopefully someone more experienced than I am can answer the question about a culture without a rash. I just can't believe it's 2020 and we're still having to fight doctors about taking the possibility of PANS/PANDAS seriously. I will ask a friend who is way more experienced in this about the various tests you can check/ask for --when you find a pediatrician or doctor who will agree to run them. Also, lots of good threads here on this board about which tests to ask for. In the meantime, hang in there! You'll get your daughter the help she needs.
  2. Wow! I’m really sorry you and your family are dealing with this. It definitely sounds like PANS to me. Have you tested her for anything else besides strep? Myco p? Lyme? My 7 year old had both Myco P and strep in August 2018 as his triggers. We cycled through several different antibiotics (starting with amoxicillin which just barely helped) before finding the right combo for him. It took months for him to get back to baseline and he does have flares from time to time. And yes—teeth can be a big trigger for some kids—it is for mine. I’d definitely look for other triggers besides strep. Als
  3. He is! Thank you for asking. We did a steroid burst for 6 days and he said the intrusive thoughts went away or were so minor that he could deal with them easily. Here’s hoping it lasts!
  4. Thanks Wisdom-Seeker for the reply. His doctor recommended that we try a 5 day steroid burst so we're on Day 1 today--fingers crossed. I suppose the silver lining here is that he told us about the intrusive thoughts and was open about them. He's also eager to try the steroids which makes a nice change from the past when he first got sick and I had to force medicine on him. And thanks for the reminder about focusing on other anti-inflammatory things. He's definitely up for exercise. I've been okay with socially distant play dates like bikes rides and/or hikes with friends. I'm gratef
  5. Has anyone’s child come down with the coronavirus and experienced a flare? Backstory—my son was diagnosed August 2018 with PANS—strep and myco p were his triggers. It was a bumpy 8-9 months and then he got steadily better. The next year was wonderful—he weathered loose teeth, colds, and a month long stomach bug with minor flare issues. In March my husband and I both got really sick with covid19 and then thankfully recovered. Both of my kids seemed to get sick for a day or two with mild symptoms, but nothing else. Now ten weeks later he’s in a flare—not terrible—just intrusive thoughts. H
  6. I’m so sorry. I know exactly how you feel. My guess is that you’re the primary caregiver so you’re seeing it/dealing with it more than your husband. Try to get a break for yourself every now and then (I know it’s extra hard with quarantine issues, etc) but if you can even go for a walk by yourself it can help. It’s all just so hard. Every bit of it. It’s a constant game of whack a mole as you try to figure out exactly what is causing the flare. It won’t always be this bad. Things will improve. And you will find the strength to deal with future bumps in the road. Take heart—we’re
  7. I feel your pain. After a year of pretty much no symptoms--all of a sudden intrusive thoughts have popped up again out of "nowhere" again. I'm awaiting the results of a strep culture (the rapid test was negative) but am wondering what else it could be. I just really, really, don't want him to back "there' again.
  8. Yes! I feel like my son was always complaining of being itchy. Sometimes, he legitimately was breaking out in a rash, but other times there wasn't anything I could find and he was scratching like crazy. Just all part of the "fun" I suppose. 😕
  9. The way it's been explained to me is that we have bacteria in our mouths at all times. When a tooth is loose/falls out/or is cutting through the bacteria can get into the bloodstream thus causing the immune system to "overreact" and mount a defense. Some people have their kids take Motrin and/or antibiotics a day or two before a dental appointment, the day of, and a few days after. My son definitely had a flare up when he lost a couple of teeth and then almost immediately the adult teeth came through--it was intense. But the good news is that it doesn't always happen! This last winter he
  10. So we didn’t see any real improvement on amoxicillin—he was on that for 14 days. Then we saw an infectious disease specialist who tried Azithromycin for 5 days, then Doxy for a week and Keflex for a week. No real improvement—maybe moments here or there but things also seemed to get worse. Then we saw a PANDAS specialist—Dr T—and tried Biaxcin for a month. Some improvement, but then he added in Augmentin which again helped. Then switched to Clindamycin and Rifampicin which again helped (each switch prompted some setbacks). That last combo seemed too harsh for his stomach and we switched back to
  11. Hi, My son was on antibiotics for 6 or 7 months and it wasn’t till his strep and myco p titers fell that we saw great improvement. I think even though the strep was gone the antibodies stay elevated for months afterward. Certain symptoms of his went away during that period—only to be replaced by other symptoms/rituals, etc. Finally, after months. I could get him to see that some of the remaining things were just “bad habits” like refusing to walk on our new rug and he slowly started to break those habits. Also teeth were a big trigger for him. Loose/losing teeth and having new te
  12. Anytime—good luck! Just about a year ago I was crying along with my son who was covered in hives and making horrible noises every time he had intrusive thoughts. Now he’s happy and healthy so there is definitely hope.
  13. Pennmom—yes, his intrusive thoughts were the last thing to go. He had hallucinations (he saw werewolves all over the place), ocd—lots and lots of rituals like running in front of the back door a certain number of times before he could enter the house, extreme separation anxiety and extreme anxiety in general, and emotional lability. Those symptoms began to ease up gradually between 3-7 months from the time of the first onset in August 2018. The hallucinations and accompanying hand movements were the first clue that something was terribly wrong in August 2018. Looking back it seemed like t
  14. I’m scared to say yes, but....yes. Since last May he’s been doing really, really well. A few bumps along the way, but nothing major. He talks to me about what it was like when he was so sick —the intrusive thoughts and beliefs he had—it’s enough to make me cry, but he seems to be processing it all.
  15. He didn’t have Lyme—but he had strep and myco p—those were his two triggers! He’s doing great now!
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