Jeff's story

My 15 yr old son Jeff was just diagnosed with CVID 2 weeks ago. He also has Evan's Syndrome which is an auto-immune disease where his body produces antibodies that attack his platelets and white cells- he was diagnosed with this last May. The treatment that put Jeff's Evan's Syndrome into remission was Rituxan which is a chemo drug that kills B cells in order to stop the production of the antibodies that attacked his cells. His immunologist says that the Rituxan "kick-started" his CVID that was not evident in any way prior to receiving Rituxan. Antibody tests, flow cytometry were performed prior to starting Rituxan and all levels were normal. Following Rituxan Jeff has had a gradually decreasing IgG which can sometimes happen with Rituxan. In March Jeff tested positive for the flu. Then 3 weeks later he had pneumonia. The IgG level at that time was 277 which had dropped from 335 a month before; it was 355 3 months before that. Jeff saw an immunologist and following more blood work and vaccine studies, he is now diagnosed with CVID. Auto-immune diseases are common with CVID- Jeff just happened to have that first! He had an IVIG treatment last Monday. We had hoped he wouldn't get the severe headache that he got when he received IVIG last May when he was hospitalized for the Evan's Syndrome. The immunologist thought he might do ok because it was a much lower concentration for the CVID than for the Evan's. Unfortunately this didn't prove true. Despite pre meds and hydrating well before and after the IVIG he woke up the next day with a severe headache that sent him back under the covers for 12 hours before he could get up and eat a little. He will be transitioning to Hizentra in the next 2 weeks which we plan to do at home. He's been a perfectly normal, healthy kid up until getting the flu and the pneumonia so hopefully by catching this early and getting on the antibody replacement we can avoid some of the complications from the multiple respiratory infections that many people endure before being diagnosed. Just wanted to put our story out there- I've been reading many people's stories in the past few days and have been inspired by the courage of many and the support given by so many members