HI, I am Lynn and I am new here.

I am here because my 13yo daughter Abby was just diagnosed with Wegner's. 6 years ago at 7yo she stopped being able to walk and move her arms so she was diagnosed with JRA which quickly became psoriatic arthritis. After 2 years of being for Psoriatic JRA she has cartilage breakdown and developed a subglotic stenosis, granulomas in her sinus and on her eye lids. Her ANCA was always negative and her kidneys were fine then. In the last 6 months she has had traces of blood in her urine so we (she) just had a biopsy 2 weeks ago. Her diagnosis has been revised to WG.

While recovering in Children's Hospital in Detroit MI, we left our now 13yo alone for 2 hours and she decided to look up her diagnosis on her own and scare herself with the bad and the ugly. So we have been doing our own learning by trying to find others who have the disease and can help her and us understand what she is going through and the treatment.


For now, she has been put on cytoxan infusions. They took her off methotrexate and folic acid that they had her on as well as celebrex. They left her on: Allegra, Qvar inhaler and Ventolin, Zantec, Tylenol, and have her on 80mg of prednisone.

Needless to say Abby (Abigail) has not had a typical childhood. But we are trying to keep it as normal as possible. This year will be her freshman year in high school and the doctors have told us to be prepared for a hard year to year and half. She has missed a lot of school even school years but we have managed to not lose a grade level. She is worried she will miss her freshman year and all the high school functions but we told her we will trying to keep it as normal as possible - hospital stays as limited as possible of course.

So that is what lead me to finding all of you.

Lynn ~ Mom to Abby