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SpenceOhana

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  1. So DD's pupils have stayed dilated over the weekend. Been giving her Ibuprofen all weekend. Anxious about this. How long did most of you notice the dilated pupils? Would they subside after taking ibuprofen, antibiotics or both?
  2. ERP is the most effective therapy technique for OCD. It stands for Exposure and Response Prevention. It is a form of cognitive behavioral therapy that is proven to be very effective for OCD and it is 100% safe. Many people on this forum have used it to great effect with their children. You can search the archives and the Internet for more information about it, but basically the idea is that you slowly and carefully expose the person to the very thing that they are fearing (exposure) and then they must refrain from the compulsion ("response prevention"). It is very hard work, especially for
  3. Newbie here too. Our daughter was diagnosed with PANS last month. She had negative strep but suffered from a sinus/respitory infection before sudden onset of OCD behaviors and compulsions. Our pediatric psychiatrist diagnosed her. Pediatrician isn't familiar with PANDAS but believes it happens as she has another patient diagnosed with it. She treating DD9 with zith because she did have a lingering cold. Her OCD subsided on day 2-3. But 5 days after treatment they returned. So I asked to do another round of zith, ped was reluctant but prescribed it. Once again her symptoms subsided day 2-3 on i
  4. I'm sorry I'm still new here and not hip with abreviations yet, what does cbt stand for?
  5. That Anatabloc sounds interesting. I see it's sold at GNC. How did you know how much dosage to give?
  6. And to treat his inflammation, did you just use ibuprofen? For how long?
  7. Scheduled with a PANDAS neurologist in May. :/ Yes for now her psychiatrist suspects PANS, since strep was negative. DD9 had a respitory/sinus infection before this all started. Psychiatrist is waiting to hear back from other peds and psych who treat PANDAS patients, she called them on Friday but she has not heard back yet. Spoke with her this morning, she said for now give her ibuprofen in the morning and evening. She doesn't want to push her ped for another round of antibiotics and have her develop a superbug. Hoping the ibuprofen helps with any systematic inflamation. She also wants DD9 to
  8. Oh and I forgot to say psychiatrist was pleased to hear her symptoms subsided with antibiotics. She was going to call 3 other peds and another psychiatrist who treat PANDAS and talk with them about longer courses of antibiotics. So I am thankful she is willing to research into this. She said she is treating one other patient with PANS/PANDAS but he isn't responding well to antibiotics.
  9. My topic title came from a comment left on one of my previous threads. So DD9 has been on two rounds of zith (5 days on 5 days off). After the first round, 5 days out her symptoms returned. Tomorrow we are 5 days out from second round and we are noticing her symptoms returning again . Hyper active talking, fear of being truthful, crying a few times (once over wanting to read, another over worrying about God being upset with her), germ/contamination phobia, incessant praying...and dilated pupils again. We noticed dilated pupils right before we started each round of zith. So I am assuming this i
  10. I already started following them on FB. I thought in their documentary video it was mentioned they may come to the Austin area? We're in the Austin area.
  11. Yikes, this makes me worry. Especially since DD9 is allergic to penicillin. What other antibiotics do PANS/PANDAS kids take?
  12. Thank you everyone for your input. Waiting to hear back from her ped today. I hope she gets on board and presribes zith for at least a few more weeks. I think I will ask her to try it in pill form, my DD9 will probably prefer that once she learns to swallow it.
  13. Do the pills have a bad taste? I'm wondering if my daughter would prefer these, she really dislikes have to take the liquid every evening.
  14. Thanks! I have been keeping a daily journal log of her behaviors. Dropping that off at the ped tomorrow to try to get her on board to do a longer prescription of zith.
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