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Caleb Rice is a 5 year old who was diagnosised with Systemic onset Juvenile Idiopathic Arthritis when he was 17 months old. This means it affects his joints but can also affect his organs. Over the last 4 years his disease has been managed with different medications including daily oral medication, different injections, and IV infusions every 2 weeks.
At his routine pediatric rheumatology appointment on March 12th they found his lungs are now affected. He has had a lung CT and bronchoscopy but will also be having an open lung biopsy because they are quite certain he has Interstitial Lung Disease.
There are roughly 50 children in the country that have SJIA and lung disease which probably now includes Caleb. Because it is so rare there is very little research and not a clear way to treat both. His current treatment is to take prophylactic antibiotics. Research has shown that the mortality rate is decreased with the use of these antibiotics. Once we have official lung biopsy results we can better determine how to manage this disease.