My 6 yr old grandson was recently diagnosed with idiopathic hypereosinophilic syndrome. He was hospitalized 6 weeks and underwent a bone marrow biopsy, lyphmnode biopsy, genetic testing and pet scan with no findings. Every lymph node in his body was swollen and so was his spleen. His wbc was 98,000 and eosinophils 78,000. They started him on nucala shot and his levels dropped 10k in 24 hrs after injection. His levels were rising and dropping for two weeks after his first dose but stayed above 1500. He now has been on the shot for 5 months and gets weekly labs done his eosinophil count is now 0.9. Oncology doesn't want him taking steroids because they think he might have a type of cancer brewing in his body and the steroids can mask it. All I'm told is this is a rare disease with not much more information except let's take it day to day. They found nodules in his lungs in July and he follows up with pulmonary this month for another CT scan to check if they are still there. Oncology is going to do another bone marrow biopsy and a spinal tap next month. Does anyone have information on this disease? I'm confused and scared for the future of my grandson.