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considering CBT again but......

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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?



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Ooohh! Good question!


Personally, I've found that in this PANDAS path, sometimes a trade-off is worth it; sort of, "the ends justifies the means." Our path started several years before yours, so there was less information, less documentation, less support for a "controversial" diagnosis like PANDAS in the beginning, and if I'd turned my back on every practitioner or caregiver we'd had and used who'd not only failed to bring PANDAS to OUR attention, but flat out denied it's existence even when I brought it up, well, we'd have had no one left to help us on any level. It sucks, but at the time, it was a reality.


In the end, as I learned more about PANDAS/PANS, I forced all my "knowledge" on them . . . I made extra copies of research papers, sent them snail-mail letters keeping them updated on DS's progress thanks to PANDAS treatment, etc. I'm sure they were annoyed at times and downright ticked off at others, but in addition to getting help for my own kid, I wanted to do what I could so that if they ever came across another kid like mine who went from happy and thriving at one appointment to a tearful puddle of dysfunctional goo just a couple of weeks later, they'd realize there was probably something else afoot and not just recommend more psych meds or extra therapy sessions! In the end, both of them came around eventually, if reluctantly.


So, I think you have to weigh the pros and cons. The fact that your therapist didn't recognize the PANDAS, unfortunately, does not surprise me at all. In fact, despite the fact that the IOCDF has fairly recently (within the last 3 or 4 years) begun to embrace PANDAS/PANs, there continues to be resistance even among members of that group; some of the practitioners I've talked with are bucking it because they think it's a diagnosis that's being reached for too often, and that it is "rarer" than the parent population accepts.


Is the therapist good and effective at the CBT? Does your child have a good, trusting relationship with the therapist? Is the therapist geographically and financially "desirable" (as in, reasonably easy to get to and accepting of your insurance or otherwise affordable)? If your answer to each of these is a resounding "Yes," then I think I'd give a temporary pass on having missed the PANDAS/PANs initially and make use of the skill set that counts when it comes to the CBT. But I'd make sure and keep them up to date with the PANDAS progress, call attention to the gains/improvements, share the video and research papers with this therapist, etc. Do what you can to make sure they don't miss it the next time it walks into their office! :P

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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 ;)

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Remember also that a CBT therapist wouldn't necessarily be a trained doctor in any case (I don't know whether yours was), and so might not be expected to know about clearly "physical conditions" like PANS, it'd be considered "not their area", any more than arthritis is a dentist's area. At least that's how it is over here - it tends to be very much separated between people who deal with "psychological issues" and people who deal with "physical issues"; if I was seeing a psychological therapist and came to them saying "I've come across this thing called PANS, do you think that might be involved here?", I'd expect the answer to be along the lines of "ooh I don't know, it might be I suppose, you'll have to speak to your doctor".


Bad system in some ways, since it means that once your doctor's passed you on to a psychological therapist you have nobody to consider any possible physical issues that might be contributing to those same symptoms (and vice versa, an immunologist won't be able to speak for any psychological factors), but you can see how it happens.


Good luck to you and your son with the CBT!

Edited by Wombat140
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