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Bella

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  1. Yes! Momwithocdson! You totally get me! I still go to the same pediatricians office, in fact I was there with my twins yesterday for throat cultures- I told the 'medical assistant' that we need to be overly cautious with potential step with pans- what's pans she asked? I said your kidding me, you still haven't been trained about this! I had a pans awareness photo with explanation! Yes I'm that mother who lectures nearly every medical 'professional' I meet! But the doc who misdiagnosed my sons mycoplasma as a 'little cough that will go away eventually' - that doc I told her what her huge mista
  2. I'm considering CBT again for my son (9)- we had done CBT in the beginning of the year with a highly regarded CBT therapist pre pans/pandas diagnosis- But my son was only getting worse and worse.... I was panicked and finally googled OCD crisis and found this video Then called my pediatrician to order mycoplasma tests which of course came back very high- Plus our long history of strep! I then found our PANS clinic- So my question is how can I trust or respect a therapist who specializes in OCD who never once asked about our medical history? How does a person in this position not ques
  3. @sf_mom: are you in SF? If so where are your twins treated? @ lighthouse- have seen the biggest improvement from the ivig! We don't have the exorcist like rages since ivig- those are gone!! We still have mild rage, ocd, and anxiety- My son hasn't been able to attend school, we are 2.5 weeks post ivig and my son has agreed to go to school tomorrow for tutoring! This is a very big step for us! Recently someone told me ivig is more likely to be covered by insurance if code is ocd, not pans- interesting;)
  4. Hi I have twins too, boys, they're 9..... One has pans (the other we recently found out had a past mycoplasma infection, but it never presented).... I discover pans through an extensive Google search in the spring time when the ocd was out of control and CBT wasn't helping at all.... We started going to a pans clinic mid May- he has mostly been treated with steroid infusions, 2 ivigs, and takes naproxen daily as well as antibiotic cefdinir- Mycoplasma is very hard to get rid of! Are your twins being seen by a pans/pandas clinic?
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