Some things just leave you speechless, and some things, at least in our family, call for humor as a coping skill. I mean no disrespect by choosing a username from a quote from "30Rock" - but "what the what?" summed up both the speechlessness and the unbelievability of what a turn our lives have taken.
A year ago my daughter had growing pains and runny nose. Two months ago my daughter had growing pains that had gotten a lot worse, wouldn't let up in fact, and there were some big chunks of some godawful things coming out of her nose every couple of days. 6 weeks ago she was having trouble swallowing, her stomach was in a lot of pain, her joints had started to swell, she was developing rashes all over (ears, nose, mouth, fingers, legs, feet, top to toe), she was clearly losing more weight than a normal growth spurt would indicate, and still had that weird nose thing. The rash prompted testing by pediatrician who first looked into hand-foot-mouth possibility, but with blood work began to suspect Henoch-Shonlein Purpura, then JRA, and then just vasculitis of some sort. The pediatrician moved heaven and earth and got my daughter into Children's Hospital of Los Angeles, with the rheum team there, with a hemoglobin count of 5 and a SED rate of 90. Days of testing and exams and we then got a diagnosis through biopsy of GPA.
Our daughter has no kidney involvement, but does have lung nodules, skin involvement, sinus stuff. She has responded very well to medication (ongoing prednisone & methatrexate along with their entourages of vitamins etc, and two infusions of retuximab.) (Not bothering to check spelling; all y'all know what I mean!) She's also doing some physical therapy to deal with neurapathy in one of her feet.
During the last few weeks I have been reading through the messages here, and learning a lot, so thank you, to those voices I have already come to be familiar with. (In fact, I can guess at ex-act-ly what a couple of you are gonna say in a welcoming message to me :-) In thiss time of such deep foundation-shifting, it is a comfort to be able to predict some things!)
That's all for now. Truly, thanks, everyone.
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