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Cmac

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    Cmac got a reaction from C_deangelis in Length on Antibiotics   
    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 there were some minor signs from earlier in the summer, too. I had never heard of PANS/PANDAS before all this.
    As for your original question I think we started to see some improvement after about 8 weeks on a certain combo of antibiotics (biaxin and augmentin) and then dr switched up antibiotics to get the myco p. Although no two kids’ path to recovery is the same it does seem like it takes awhile to get better. (I had such high hopes for our first 10 day course of amoxicillin that the pediatrician put him on when she discovered the strep). 
    Hang in there—it’s going to get better.  
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    Cmac got a reaction from Robinhubb in Intrusive thoughts not resolving   
    We did a whole bunch of different probiotics—Culturelle, GutPro, Flora, etc. For antibiotics the ones that he was on longest were a combo of Biaxcin/Augmentin and then later  Clindamycin/Rifampicin because the strep came down, but not the Myco p.  (The Clindamycin was really rough on his stomach though).
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    Cmac got a reaction from Robinhubb in Need to vent   
    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. 
     
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    Cmac got a reaction from Robinhubb in Need to vent   
    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).
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    Cmac got a reaction from Robinhubb in New diagnosis   
    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.
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    Cmac got a reaction from Robinhubb in Follow up with doctor   
    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.
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