Nomid

My 11 month old daughter and has had quite the journey in her life so far. It started at 3 1/2 weeks when she was admitted to the hospital for failure to thrive. After numerous tests,it was determined that she had omphilitis (an infection in the umbilical cord). She still had her umbilical cord at that time because they left a longer amount due to an umbilical cyst. She had to go to emergency surgery to remove the dead tissue. The surgeon was successful and I attribute him to saving her life. It was very serious and we were lucky it didn't attach to her organs. This condition is very rare and only affects .5% of children. Because we stayed in the hospital 11 days there was concern about her rash, which led to more testing and more inability to diagnose her condition. The dermatolgist had never seen a rash like it and posted pictures of it on a country wide web site for dermatologists. She was diagnosed on 4/28,2008 at 8months old with NOMID. She had the classic signs of rash, fraying of her extremities, especially her legs, abnormal lab values indicating inflammation, and hydrocephalus. They started her on naprosyn which helped her leg movement. We started anakinra in June and it truly is a miracle drug. She no longer has the rash, her lab values are normal and she is moving around and rolling over. She is still behind as far as physical movements go but will be resuming physical therapy next week. She doesn't like the shots but is getting used to them. She has had so many tests, lab draws, and IVs that its become routine for her. She is only 15# and we have been giving the shot in her leg and her butt. she cries but not for long. We go to the nih next month and are anxious to get more info and involved in studies. I pray that she will not have any adverse reactions to the medications or treatments. So far so good. Thank you for letting me share her story. She is one tough little girl.