MsMom

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!

Thank you so much for the response. I called the office and got some suggestions.

Hi, Planning a visit to Dr. Beth Latimer in Washington D.C. and would love some hotel recommendations. Will also be attending an event in Silver Spring, Maryland, so maybe a hotel midway between there and Dr. Latimer? But, any recommendations at all will be welcome. Thank you!

Yes, both of my children, now in their mid to late 20's had PANDAS/PANS, and both have CFS. (They have had the PANDAS since childhood, but it wasn't diagnosed for years and it wasn't a severe problem until they neared purberty.) My son still has severe PANDAS/PANS, but my daughter doesn't have any OCD at all now, although she has many physical issues, including CFS. (She also has Sjogren's Syndrome.) They have both been very physically and neurologically debilitated. All of these immune issues seem to be related.

I am following this thread with interest. Ozone therapy is one of the treatements suggested by my son's new doctor. (Son, age 28 with PANS since about age 12.)

I absolutely saw my daughter's social anxiety get extreme when she was having PANDAS flares, and even for a while after. Fortunately, that is not a huge problem for her anymore.

bobh, I am all ears. What do you think the next steps for the sinus infections would be? My son is hesitant to get IVIG because of the terrible reaction my daughter had to it. My daughter recently had her tonsils out, so my son is kind of open to that. My daughter had horrendous pain after the tonsillectomy though, which isn't uncommon, but still was awful. (She was 24.) Son is 27.

Beenthere, your story gave me chills. I have a 27 year old son who has been in and out of Pandas since elementary school, but the first severe episode was 7th grade. (This is all hindsight, as he was not diagnosed until high school.) He is now in a very severe flare and has been for a couple of years. He is begging for help. He saw Dr B in Connecticut several years ago, occasionally sees a very informed allergist/immunologist a few hours away (who gives no meds, just supplements) and now sees a very sympathetic family doctor in our own city (who has him on Azithromycin and Augmentin.) My son has to go off the antibiotics often, because of all of the diarrhea they cause. He is desperate, and I don't know what the next steps are. His sister also had a couple of severe PANDAS episodes, but does quite well now. She also had 3 bouts of what is now believed to be rheumatic fever, in which she was sick for months each time. She is also in her 20's. She had an EXTREMELY severe reaction to IVIG several years ago , so we never again did another one, and are hesitant to recommend IVIG to our son for that reason. He is feeling out of answers. (By the way, while our daughter had positive strep swabs, our son never did. A couple of the doctors said it is probably in his sinuses or gut. He had sinus infections constantly as a child. Still does.) We could certainly use some advice and hope.