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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 mistake was and refused to work with her again and insisted on another ped- in front of my wide eyed non pans boy..... Recently with the 'medical assistant' my non pans twin gave me the 'oh no you're going to give the pans lecture again look?!' It was sweet, he knows it's important! Lastly, I went through your pros and cons- and it was a yes..... You're absolutely right, I can't alienate all our resources! Thank you for helping me reach the correct conclusion
  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 question if an 8 year olds OCD is medically related?! Do I just forgive and forget? WWYD thanks!
  3. Bella

    MYCOPLASMA - how have you treated

    @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. Bella

    MYCOPLASMA - how have you treated

    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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