Hello everyone!
My name is Teri Raspanti. My family lives near Denver, Colorado. My 14 year old daughter was admitted to Children's Hospital on 3/16/17 with what we thought was pneumonia. For this being a rare disease and even more rare in children, the doctors diagnosed it fairly quickly. She developed pulmonary hemorrhage and was intubated. She was started on high dose IV steroids and Rituximab. She's had 2 rounds of 3 day plasmapheresis and her first Cytoxan. Those treatments and meds were not able to control the inflammation and she was put on VV ECMO to rest her lungs. Today is 3 weeks since she was admitted. We are finally seeing slow progress. We are hoping to wean her form the ventilator soon. I still can't believe all this is happening! Has anyone had a pulmonary hemorrhage?
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