When Teddy’s nephrologist said a few months ago that she wanted to take out his tonsils at some point because they were large (not because they were enlarged, or growing, or anything like that – just because they were large) and they make her nervous, I was kind of not on board with that. Her concern is PTLD, which I’ve blogged about before. It’s the stuff that haunts my nightmares. They feel Teddy might be at a greater risk for PTLD because of his congenital immunodeficiency, and of course peds transplant recipients are at a higher risk to start with. PTLD can often start in the tonsils, so they (and his lymph nodes) are something we monitor pretty closely.
I sat down to do some research on PTLD and enlarged tonsils and here’s what I found:
The goal of this study was “to recognize adenotonsillar enlargement in those children at risk for PTLD, thus allowing for earlier diagnosis and treatment of this organ-threatening and life-threatening disorder.”
Conclusions: Adenotonsillar enlargement in the post-transplant population appears to have greater significance, as a marker for EBV hyperplasia and PTLD. When identified either by symptoms or physical exam, plans for adenotonsillectomy should be emphasized. Unlike healthy children who may be observed for regression, pathologic examination of adenotonsillar tissue is necessary to identify early lymphoproliferative disorders.
So… enlarged tonsils are more significant in post-transplant kids, and really can’t just be observed.
Gist of the first page is that PTLD can be difficult to diagnose because there are so many forms. “in children, the lymph nodes of the Waldeyer’s ring and tonsils are very common target organs.” Honestly, I didn’t stick with this article all the way through.
This was an interesting paper, though the survey included is of little use to us because Teddy is still a mostly nonverbal, nonpotty trained toddler who doesn’t eat orally.
Really, knowing that a biopsy is critically important to early identification of PTLD, and early detection is critical to treatment, is enough for me. It goes against my “God put those parts in there for a reason” ethic, but the reasons for proceeding are compelling.
Now with EBV active in his system, and the tonsils larger than they have been, I totally understand and agree with the plan to get them out asap.