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  1. Boston Globe story on PANDAS/PANS

    Keep leaving coments and spread the,article far and wide. Tiffani, lmk if you need help, I am happy to
  2. Steroid-induced psychosis

    My daughter 11 was on a 3 week taper. By day 2 she was a mess. Had to stop. Find out before ivig if they give steroids. request that they not be given. Steroids also make lyme worse
  3. discussion about dogs and strep

    That sounds awful
  4. discussion about dogs and strep

    arial- Dr.B was asking me about the dog stuff. keep chirping in his ear. I met another mom while getting IVIG there and her dog was + too. If he hears it enough, maybe he can help somehow. Where the heck do you live???UGH strep!I hate you. they cultured pos for strep on aug/zith combo? now that is frustrating and scary. Omnicef zith might be good just to mix it up.
  5. discussion about dogs and strep

    I am not sure why it was 10 weeks. originally the positive dog was supposed to be 6 weeks. I had them increase it to 10 because after we stopped it at 6 my son flared again. so I assumed it was the dog. The dog that didnt get cultured was also too old to put under got 3 weeks. I gave the cats Bicillin myself. I was supposed to have the dog off abx 2 weeks and recultured but I am too broke. It was about $400. but I am so GLAD that I found a reason. I give the dog bicillin when my son has set backs or her skin looks bad. Now after you treated the dog, and everyone tested positive for strep the dog could have picked it back up. Maybe invest in some Bicillin, or give the vet a call. I would retreat the dog. I will do some research as to why 6 weeks. I have a few emails out to a few vets and trying to find a Zoonotic researcher who might be interested in this! I think its fascinating (and scary as ######)
  6. discussion about dogs and strep

  7. discussion about dogs and strep

    I dont see why a cat couldnt be a carrier especially if the cat shares a water bowl with a dog that has it. I say if you have a few bucks test the dog! Dont know how long your dog has been in your life while your son has been battling, but I would venture to guess if its been a few years, your dog has been on abx for something in that time!
  8. Here is my 2 cents for what its worth.... DOGS can be carriers of Strep! When my son didnt seem to be getting better after being 100% and going down hill, I had a gut feeling that my dog was an issue. I had my dogs throat cultured under anesthesia. My gut was RIGHT. She had culture positive STREP in her throat! She had no symptoms. We treated her for 10 weeks total. About 5 days into treatment my son got back to 100%! IMHO if you can give all the abx and IVIG in the world to your child, but if fido is a carrier and sleeping with your kid, its not going to work. After the one dog got diagnosed I treated all my dogs (and my cats on my own). If you are looking for a cause talk to your vet. get a dog cultured. If one hasit, they probablly all do, so treat all of them. If you are broke, and cant afford to have your dog put under, then explain the situation to the vet and see if they will do treatment without the culture. I have to be honest. I had never done a culture of a dogs throat in my vet tech experience. Even the vet I knew looked at me funny when I asked her to do this. But she said it was possible. Its reverse zoonosis. We(humans) give the bacteria to the dog and they carry it. Its no different than if your spouse was a carrier. They can also be rectal carriers. I am not saying that you should get rid of the pets. But be aware, investigate mention it to the doctors your children see. I am happy to talk to anyone further including docs, vets, etc. (not that they want to talk to a lowly tech) I plan on sharing this with all PANDAS doctors. Some are aware including the NIH, but I think they need to get on this issue
  9. IVIG #3 starts tomorrow

    Thinking of you both today
  10. My son has classic PANDAS . No elevated strep bloodwork. NIH told me 1/3 of PANDAS KIDS do not have elevated aso antidnase b. So keep pushing forward and trust your gut. get to a PANDAS DOC asap
  11. IVIG #3 starts tomorrow

    Hi We met today! My son is the little guy. lol. anyway we are back in the am as well see you then. might be nice to talk. Day 2 for my son is tougher with headaches etc.
  12. Hi everyone.Hopefully you have heard by now that there is a protest being held for the next 3 days at BCH! There is a child in the hospital that has PANDAS/PANS/LYME and custody has been taken away from her parents for no good reason. We are protesting for her and ALL PANDAS/PANS/Lyme kids that have been mistreated and not treated and we hope this will start to change things in this area! please like this page https://www.facebook...eeelizabethwray and read more. We think this is a day of change and could help all of our kids! I personally brought my son here and was told "absolutely not PANDAS" and "stay off the internet" and he was diagnosed at the NIH 3 months later. So this could have been us just as easily as this family. Please share tweet contact everyone you know about whats going on here. Today is the day to push this out there. All are welcome to attend the protest and details are on the page I gave. Thanks so much!
  13. We used benadryl an hour ahead. they used topical lidocaine cream it stays on at least 30 minutes. ! hour is better. It wasnt fun but part of the process. The NIH does not sedate. But maybe your doc can? it only took5 minutes. I stayed