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  1. Thank you - I did not have much luck researching either. I will email the dr. tomorrow and ask. My own doc certainly doesn't appreciate the risk factor I'm dealing with here. He said it only needs to be treated if you're pregnant.
  2. Our daughter was recently pulled from school for school refusal... we are just now getting her a PANDAS diagnosis after three years... the refusal was manageable up until last spring (after she got strep again.) I think it is mainly because the inflammation plus the anxiety makes it hard to concentrate (ADHD-like symptoms), plus she has recently developed auditory sensitivity that she did not have early on. She had just started middle school/fifth grade and I think the bigger school, the banging lockers, the crowds and the accompanying noise just got too overwhelming for her. She kept screaming, "You don't understand!" over and over again when I tried to drag her in. In other words, it never felt like a control thing to me, but more like her 10-year-old way of letting us know she was in over her head and needed relief.
  3. This is TMI, I know, but I (myself) had been feeling itchy down below and in light of DD's recent flares, I took a look with a mirror (she was positive for perianal strep last year.) I saw the red ring that looked just like she did, so I went for a culture... it came back + for Group B strep but my PCP says no need to treat and that it's not the cause of the itching... can Group B strep cause a reaction in PANDAS kids?
  4. Hi, MC2, Thank you so much for your detailed story... much of it is similar to ours with DD(10). I too, dismissed PANDAS almost two years ago (late-night searches on anxiety in children) as she was not presenting with tics, or "obvious" OCD (she has irrational fears, mostly surrounding our house catching fire and other threats to me, her mom, and we were already 1.5 years in from what I believe was onset when she admitted to a therapist she was having this). I also could not name the date it started, though I sensed it was fall of 2014, but my husband had just lost his younger sister, DD had a very strict teacher and she later admitted to being bullied on the bus... so the diagnosis of anxiety we first got that October made sense... too bad they failed to note the strep diagnosis three days following (she was complaining of stomach aches when we went in for the anxiety diagnosis... she does not get the classic sore throat, so I feel certain she already HAD the strep.) We see our first specialist in two days... my question now is, how do you hold the school district (and your spouse) at bay when she has been pulled from school and they all expect her to just go along willingly with the assigned four hours a week of tutoring? She was exhausted after the first session (2 hours straight) and has had MAJOR meltdowns each morning we've tried since, necessitating the session to be canceled... though I believe she is simply not capable of the work right now, I am certain everyone thinks she's "playing" us... her dad even thinks it is "calculated." I'm hoping a diagnosis on Tuesday will help, but I still don't know what to tell the school... how long was it before your son could do schoolwork, and did he have to repeat a grade? Not the end of the world, but she's isolated enough already between missing school and the age regression, which has deterred her from playing with some of her friends (she's leaning toward the kids who play a bit younger)... I'd hate to see her miss out on returning to her current classmates.
  5. Thanks to both of you for your replies... we have been putting off a blood draw because I know it will be awful and I will need my husband on board, but it's time... We had an awful morning today... the homebound tutor was due for the second time and DD went utterly berserk on me for about 45 minutes. After ripping her favorite shirt in half, she kept repeating, "It's just a dream, not real, not real," over and over again, and clawing herself in the hand to 'wake up.' It breaks my heart to see her that way. Hours later, aside from a mild fever, she seems fine for the most part, but *I* still feel like I got hit by a train. Hoping we get some answers soon. Our regular pediatrician ordered some labs; I just need to see if Dr. Carine will order the same ones, or if we need additional tests.
  6. Hi all, I am new here and this is the first time I've posted... worried and seeking answers. I am pretty certain our DD 10 is coping with PANS and has been for three years now. We live in Ohio and are waiting to schedule an appt. with Dr. Carine to get a confirmation (sent the paperwork yesterday.) Our girl is sick now (or flaring), though, and I am trying to decide if I should wait to see someone at Dr. Carine's office (which could be weeks still) or if I should push it at our own pediatrician's... Have not had much luck getting them to take my concerns seriously so far. They did a strep swab last week and it was negative, but she's complaining of nausea, has diarrhea, a low grade fever, and is crazy pale. Her face also looks swollen to me and she says it hurts. Dark circles under her eyes, also. I hate seeing her feeling so lousy, but if the swab is negative I'm not sure what else to ask for. She presents atypically for strep, and we recently pulled her from school to do HBI after a long bout of school refusal that started with mycoplasma in September. Thanks for any help.
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