Thank you for the reply! Currently, there is no definitive diagnosis. She's on prophylactic zithro for respiratory anti-inflammation benefits (per pulmonology) and to prevent bacterial infections (per immunology), as well as some other breathing meds and chest percussive therapy. She develops "breakthrough" respiratory infections and gets treated with 21 day courses of stronger antibiotics. Recently steroid eye drops were added for non-specific eye inflammation (thus a trip to Philly's Wills Eye Hospital later this week, to maybe get a more definitive answer). With all of this she is not a "sickly" kid and is thriving otherwise, muscling through health issues as best she can... which also leads to the occasional doctor telling us our kid is so "healthy looking", so smart and talkative that clearly she must be faking to get attention (even with documented chronic low-grade fevers, and multiple office visits with 104+ fevers, "bad lungs", etc).

She had a bronchoscopy at the insistence of an amazing pulmonologist (even though she had limited breathing symptoms) and they found definite inflammation and nodularity. She's had 3 ENT surgeries and ENT sees inflammation throughout as well, but ENT can't offer more help. Immunology does not like the clinical picture but her immune labs are not quite "low enough" to be definitive, and immunology at least hints they do not feel the final answer will be immune (though we are waiting for some repeat testing, and deeper tests may ordered in August). So all roads seemed to be leading to autoimmune or auto-inflammatory, but so far the usual rheumatology tests are not netting a diagnosis and the big culprits (ANA and such) are negative (of course there are more tests in the works).

It just "feels like" - and maybe this is grasping at straws - there isn't much anything more systemic than blood itself! Luckily we have amazing insurance and a great local health network so I'll give hematology a call and see if they'll see us without the need for a formal referral (they have full access to our records in the network).

Thank you for your help and compassion!