Cind Posted July 20, 2017 Report Share Posted July 20, 2017 I was watching Dr Kovacevic's talk online (below) where he mentions (at 39:00) how T&A surgery can help prevent a recurrence of Pandas. He seems to be saying that it is helpful not because it removes chronic infections hidden in the tonsils and adenoids. Rather it is helpful because when strep infects the tonsils, the tonsils then create the TH-17 cells which leads to Pandas. So a tonsillectomy helps not by removing the infection, but because it removes the TH-17 creator. Am I interpreting this correctly? Link to comment Share on other sites More sharing options...
jan251 Posted July 20, 2017 Report Share Posted July 20, 2017 (edited) Interesting. If the Th17 is coming from lymphatic tissue, I suppose it's possible, except that the tonsils are not the only lymphatic tissue in the area and the tonsils aren't the only location for strep infections. There is lymphatic tissue in the sinuses as well as many other areas of the body. This might explain why T&A seems helpful for some cases of PANDAS but nowhere near all. Last I remember, the limited data indicated that T&A helps about half. T&A did not help my kiddo, though I do not regret it. I'm glad we eliminated the possibility. He recently had a sinus CT and we have an appt with ENT soon to discuss the results. Plus, it would be unsurprising to me if my kiddo had strep in the gut, where there is lymphatic tissue, though I don't quite understand how it can really hide there from antibiotics, unlike in the tonsils. Also, our doc frequently mentions that strep can be in the urinary system (bladder) as well. Edited July 20, 2017 by jan251 Cind 1 Link to comment Share on other sites More sharing options...
Cind Posted July 25, 2017 Author Report Share Posted July 25, 2017 (edited) Yes, it makes sense that the sinuses could harbor infection and activate the T-cells as well. I am wondering about the sinuses now. An MRI showed a sinus cyst. Would a CT be more useful? Do you know if one always have to have general anesthesia to remove a cyst? I wonder why looking for and resolving sinus cysts is not done at the same time as T&A. It seems like it would be easier to handle all at once. Edited July 25, 2017 by Cind Link to comment Share on other sites More sharing options...
jan251 Posted July 25, 2017 Report Share Posted July 25, 2017 My *very rough* understanding (which might not be correct) is that sinus infection is basically mucus/gunk that doesn't show in MRI. On the CT, there were areas the ENT pointed out to us within the sinus cavities that she believed to be infection even though the CT report from the radiologist didn't mention it. I have little to zero understanding of sinus cysts... I agree about the T&A. We just did that a few months ago! But we are seeing a different ENT for this. On the other hand, maybe sinus surgery with T&A would have been too much at once. Link to comment Share on other sites More sharing options...
Cind Posted July 25, 2017 Author Report Share Posted July 25, 2017 5 minutes ago, jan251 said: My *very rough* understanding (which might not be correct) is that sinus infection is basically mucus/gunk that doesn't show in MRI. On the CT, there were areas the ENT pointed out to us within the sinus cavities that she believed to be infection even though the CT report from the radiologist didn't mention it. I have little to zero understanding of sinus cysts... I agree about the T&A. We just did that a few months ago! But we are seeing a different ENT for this. On the other hand, maybe sinus surgery with T&A would have been too much at once. I agree that adding to the T&A surgery is probably too much. Do you follow up the T&A with IVIG? This is what Dr K recommends... Link to comment Share on other sites More sharing options...
jan251 Posted July 25, 2017 Report Share Posted July 25, 2017 We haven't yet. We did 11 infusions of IVIg before the T&A (backwards, but the data on T&A was mixed and my child has an immune deficiency, so IVIg made sense at the time). Strep titers are still high after T&A, so we are trying to track down the source of that. Link to comment Share on other sites More sharing options...
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