Hello All!
I never pictured myself in a forum like this, but I bet none of us did. Here I am, or shall I say here we all are. I hate the fact that you all are fighting this ugly disease, but look forward to getting to know you and am asking for your experience and guidance as we battle this together. My daughter is 13 years old and has been dealing with autoimmune problems since the day she was born, but NO one knew what we were dealing with until August of this year. Initially we were told it's eczema, it's allergies, it's whatever. She did small doses of methotrexate from age 6 to age 11. She took herself off at 11 as she hated it so much. She continued to have problems, but this past summer I noticed her having fluid coming out of her nose and huge bloody scabs coming out of her nose. Took her to the ENT and he had a horrible look on his face before telling me what he thought he was seeing. 3 days later surgical biopsies, then he worked hard to get her into the Univ. of Iowa Children's hospital with in a week or two and our adventure began. My daughter has been home schooled because when she was little she always caught everything and school on the traditional level didn't work. She was scheduled to enter junior high this year and when she was diagnosed and spent a week a the children's hosp. shortly before school started she was devistated by this diagnosis and is presently depressed and angry. She is only doing school on a part time basis and is a jock as she puts it. She played, soccer, volleyball, did swimming and presently is in basketball. She just wants to be normal and is scared as a result she is angry and hasn't been cooperating since Dec, at which time we learned the disease isn't getting under control and that they want to do serious plastic surgery on her nose so that it doesn't collapse any more than it is already. My husband, son and I are scared too, but due to having had numerous health problems myself I learned a long time ago you can't wait for the storm to pass you have to dance in the rain. I want her to get to a point she can do this, but right now we're struggling. She refuses to see a psychologist and I'm at a loss. The plastic surgeon says she won't do anything until my daughter is ready, but without terrifying the kid how do I get across to her how serious things are and that she has to cooperate and help herself to get the best results for her health and her happiness. I know this is frightening! Any guidance is appreciated. Have a good night and peace to all.