"CLASSIC STREP". We saw a new doctor today. Private pay. Children with PANS/PANDAS grow up into adults with PANS/PANDAS.
This is what we've been dealing with on and off since MARCH, y'all. Ulcers all over the mouth and throat and tongue for over three months with behavioral symptoms of strep.
You cannot imagine my frustration and anger with mainstream medicine right now, multiple providers (five of them at three facilities). "No need to test again; the first test was negative." No need to test nasal passages or draw titers, even when Mom suspects that this is strep because these are THE behaviors that come with strep.
Let's try an SSRI for it instead, they said. (poppycock, I say)
Six weeks or so later, "It's happening again," I say, thought the clinic portal.
"I'm sorry it's happening again," one nurse replied.
"Would you like a referral to V?" the other nurse replied
"Yes. Who there treats this underlying autoimmune issue?"
"I don't know anyone who does. You can still try the SSRI" (and ignore the underlying medical condition)
Here we are AGAIN. More ulcers. More strep behaviors, just in time for an appointment with a specialist who knows autism, PANS, PANDAS, Lyme. Doc got to see it all in person and when he saw the her mouth, first words were, "CLASSIC STREP." Finally. Finally. Someone who gets it.
Why is mainstream medicine SO. FAR. BEHIND? Why is there no one in the 'fabulous' (sarcasm) teaching hospital who knows this? Why has my kid had to be in pain for so long? Why are they suggesting an SSRI without looking into the underlying illness and autoimmune conditions?
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