My 18 year old son was just diagnosed with both Crohn's and Wegener's. He's been in the hospital (Beth Israel, Boston), for two weeks now and had just about every specialty known to man working him up. A lung biopsy was the defining procedure and he definitely has Wegener's.

My husband is a doctor and is very freaked out -- freaked out beyond words. My son is a senior in high school. He's been started on a high dose of intravenous preg for 3-days in the hospital and then he'll be released from the hospital and put on 60mgs. of preg, plus Cyt (or something that starts like that -- it's a cancer drug), for 3-months. The rheum. who is working with us was very optimistic that our son will tolerate everything just fine and will be able to go back to school, but his Crohn's doctor isn't so optimistic. She said tonight "He has a long road ahead of him." Needless to say I'm very freaked out. My son goes to boarding school and at this point, there is no way we can send him back to school not knowing how he's going to react to the meds. He's determined to continue applying to college and get his apps in. He has to bank his sperm next week, before they start the cancer med., in case it makes him sterile. This is all so much -- overwhelming, really. It's like one day he was fine, the next day he had stomach problems, and the day after that he had fever and strep and a runny nose and a cough and it all went downhill from there. Only lung involvement with the Wegs so far -- no kidney involvement YET. Any advice would be much appreciated. Should he take the year off from school? Does anyone tolerate the cancer med without getting sick to their stomach? What can I do for my kid? He's moody as it is -- how bad are his moods going to get, exactly? Any and all advice is most welcome. Oh -- I asked about the new drug that I read about on here -- something that starts with an "R," and the rheumatologist said that the initial study wasn't big enough so that she'd recommend it to start. She consulted with some bigwig Weg's specialist at Boston University and said he agreed with her treatment plan. She says she has a number of Weg patients who are doing great and who have been in remission for years. Is she just painting a very sunny picture or does this happen?
Thanks everyone for your advice. I am a very worried and freaked out mother.