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cmac

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  1. Maybe a PANS/PANDAS specialist could do a Skype/phone consult and at least give you a script for all the blood work? Also this thread has info on doctors people here have seen and I think various states are mentioned.
  2. My son had strep and myco P. Try testing for myco P. I had never heard of it before they tested for it (I had never heard of PANDAS until pediatrician told me). The first dr we saw after pediatrician was an infectious disease specialist—he tried a whirlwind of antibiotics over a course of two or three weeks and nothing really helped. It was only after 6 weeks of Biaxcin plus 2 weeks of Augmentin on top of that that we saw a difference (that was with Dr T—specialist in NJ). My point is that you aren’t doing anything wrong —just that most times this is a long haul. I think there are a few kids who recover quickly with one two week course of antibiotics, but I think they’re the exception not the norm. From what I’ve gathered it can take 4-6 months (in our case it was 6-7 months) to return to baseline after the initial exacerbation and the exacerbation can last for weeks, too. I think time is a big part of the healing process. The inflammation needs to come down and even if there are no strep titers, there could be ones from myco p. Have you also checked for Lyme? Oh, and even with a solid PANS diagnosis from multiple drs, I did also wonder if my son was mentally ill and that I was deluding myself. So, I know how you feel. And we were offered psychiatric drugs almost immediately as well (from the infectious disease dr).
  3. We’ve also used curcumin as a help with inflammation. It’s a derivative of turmeric.
  4. My son had a major flare this past February after a dental cleaning and two teeth falling out/then almost immediately the adult teeth came through. It lasted several weeks and was the worst episode we had seen since the initial onset. And my heart goes out to you regarding the intrusive thoughts--they were one of my son's hardest symptoms. He would sob in the middle of doing something or talking to us because they were tormenting him. Night time was the worst. He was so miserable and it took a long, long time for him to share some of the thoughts--basically he was afraid he was going to hurt us. I just kept reassuring him that there was nothing he could think that would make me or his father love him any less. And I kept reminding him that these thoughts were not him. I had him picture a stop sign in his head and then say to himself "I'm having an OCD thought about . . ." Also, grounding himself in the physical world helped. Tapping his feet slowly and calmly in a rhythm or focusing on three blue things he could see in the room and three things he could hear and three things he could feel with his hands--basically having him use his 5 senses to reground himself in the physical world instead of feeling trapped in his head. It is overwhelming--but you will start to find methods that help her.
  5. Hang in there—you are going to find her the help she needs.
  6. I’m so sorry you’re dealing with this—it’s heartbreaking and overwhelming. My now 8 year old son was diagnosed last August—his triggers were strep and myco p. He was on daily antibiotics for months —several different ones and combo ones too—before we started to see improvement. He battled anxiety and OCD—rituals and intrusive thoughts. Has she been tested for myco p? I know you said you’re in TX—maybe a PANDAS doc could do a phone consult with you and order blood tests that your local pediatrician could do? And unfortunately most of the PANDAS specialists don’t take insurance and do cost a fortune! Oh, and not sure if this really helped or just coincided with him getting better, but cutting out gluten and dairy seemed to make a difference. They both can inflame the body and since PANS/PANDAS is an autoimmune disorder it makes sense. As it was explained to me the problem is two fold—getting rid of the infection and bringing down the inflammation. Also does she seem to get any relief from Motrin? That can help with inflammation too. Good luck. You will get through this.
  7. This happened with my son, too—his first dental cleaning since being diagnosed with PANDAS seemed to set off a flare—but like you I think he was already in one due to loose teeth. A couple of days after cleaning, the teeth fell out and then a week later the adult teeth started coming in. All this to say that loose/lost teeth/cutting new teeth and cleaning seemed to set off the worst flare we’ve seen since the initial onset. I’d consider the antibiotics as well as a couple of days of Motrin to help with inflammation. Best of luck and glad he’s doing so well otherwise.
  8. If only a winter time thing could be excema related to dry skin/cold air/extra heat in the house.
  9. Hi, Just seeing this post now and we’re kind of going through something similar with my DS7. Did you ever figure it out? Was it a flare? I just got my son tested for strep today (rapid was negative) because of some troubling pandas signs returning that started this whole journey (hallucinations). This is a roller coaster for sure.
  10. We definitely experienced some antibiotics that didn’t seem to help—when my son was first diagnosed this past August, his pediatrician put him on 14 days of Amoxicillin—this barely helped. Then an infectious disease specialist that our pediatrician sent us to tried Zithromax, then Doxycycline, and finally a combo of Keflex/Rifampicin. None of these really helped. Meanwhile I had gotten an appointment with a Pandas specialist who prescribed Biaxcin for a month and then he added in Augmentin for 2 weeks. This helped with bringing the strep down, but not the mycoplasma. After that he prescribed a month of Clindamycin with ten days of Rifampicin, too. It’s been 5 months—my son is back to school and while he still has some anxiety and OCD his titers have gone down and he’s about 65-70% back to himself. Life is far from perfect and I wonder if some of these behaviors/changes will now be permanent, but I’ll take what we’ve got now over him sobbing and howling in a corner of the living room and unable to attend school or really even talk to people. I’m so sorry your daughter and you/your family are going through this. I had no idea that Pandas even existed before last August and my heart goes out to you. You will find the right help for her and she will get better. Oh, and my son didn’t throw up, but did complain of stomach aches daily—it might have been the 5 months of various antibiotics destroying everything or anxiety or both. Anyway, hang in there.
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