Sharing our Experiences

My daughter Sarah is a patient at NIH as well as Children's Hospital of Philadelphia. After 2 long years of sickness she was finally diagnosed with FMF in April 2006 by the Doctors at CHOP (Children's Hospital of Philadelphia). Sarah was started on colchicine right away, but she did not tolerate it at all. The minimal dose did nothing and everytime it was increased she got very sick from it. She also has suffered from Failure to Thrive as a result of her FMF. She was initially started on the feeding tube 2 years ago and did wonderful with her growth. After a year and half and back in the 40th percetile on her growth chart she was givena trial without it. After 5 months, not only had she not grown at all or gained any weight even though she was eating well, she lost weight and fell off the growth chart again. Six months ago she started the Anakinra injections and that seemed to help with the daily pains but she was still having low grade fevers every 10 days or so and high fever attacks every 4-6 weeks. Prednisone was added this last month, but no change there either. Three weeks ago she had the permanent feeding surgically placed and has already gained 2 lbs. Through all of illnesses and pains she just keep on going, she is truly one amazing little girl. However, we are getting really worried about her. I haven't been able to find any other families whose children have FMF and also suffer with Failure to Thrive. The doctors are ordering more testing to see if they're missing anything. I'm really not sure what our next step will be. Praying for a cure or to find someone to share their experience with us. Kim