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How to find an ENT to remove tonsils in adult PANDAS/PANS patient


MsMom

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I have a family member who has had PANDAS/PANS for many years. (He was diagnosed in his early teens.)  He is an adult now, and it has been recommended that he have a tonsillectomy to help treat his PANDAS/PANS.  He visited one ENT who wants him to do a bunch of other tests before he will decide on doing the tonsillectomy (allergy testing, scans, etc.)  We are really hoping to find an ENT who is knowledgeable about PANDAS and will consider removing his tonsils for that reason, rather than having all of this testing done and then having the doctor possibly decide not to do it. We want to expedite the process of getting him well, now that we have some direction.  We're in Missouri but will travel.  So, my questions are 1) Can anyone recommend a PANDAS knowledgeable ENT who treats adults, and 2) If you've had experience with ENTs, during your PANDAS journey, how did you convince them to do the tonsillectomy?

Thanks so much!

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