- CASE FILE
Please help my 11yo with an unknown autoimmune disease
ABOUT THIS CASE FILE
Since shortly after my 11yo daughter was born, she has struggled with frequent illness. From 3 months to 2, she had recurrent bronchiolitis. From 18 months to 4, she had recurrent kidney infections. She was tested for reflux, which was negative, and treated with daily antibiotics for a year. From 4 to 6, she had frequent ear infections and strep (almost every month). She had her adenoids out and ear tubes placed. She was somewhat healthy for about a year with only minor colds and 2 cases of sinusitis. When she was 7, she began getting large patches of what appeared to be broken blood vessels all over both arms (various photos attached). I honestly thought someone at school had hurt her and she wouldn't tell me. One day, she developed the spots in school and they thought it was a rash. I took her to the pediatrician who did platelet testing, which was normal. Around that same time, my daughter had Flu A, a gastrointestinal illness, and Flu B in a 3 week time span. The pediatrician sent us to an immunologist for evaluation of her immune system. All of her immune system tests were normal, however we continued with the doctor, who was also a pediatric rheumatologist. When she turned 9, the spots were coming every few months and we were noticing joint pain and stomach upset at the same time. The pediatrician suggested Henoch-Schonlein, which was ruled out by the specialist. The only definitive diagnosis we have is emerging leukocytoclastic vascultits, based on a skin biopsy. We have heard lupus mentioned, but nothing definitive. Her ANA, anti-dsDNA, RhF, ENA, C3, C4, CRP, and sed rate are all within normal limits. She is vitamin D deficient and takes a supplement. Her urinalysis and blood urea and creatinine have been off in the past. She also had a pink, scaly rash on her face (cheeks, nose, and above her eyes) in May of 2018 that looked to me like a malar rash. The dr did not agree. She was orginally treated with cholchicine (June 2018-Sept 2018) which made her digestive symptoms worse. She has been on tacrolimus since Sept 2018 and has 4 flairs since then. I feel like we are just putting a band-aid on with medicine but we do not know the cause or the full scope of the issue. Please help!