It is undoubtedly scary having a child with a serious disease. We believe our son had Wegener’s/PAN from preschool age although it wasn’t diagnosed until he was 18. It was devastating as he has been a very talented musician/performer from the beginning. Additionally when he was 2 weeks old his 3 year old sister had to have open heart surgery and she is completely well now. For us the unknown was far scarier than the diagnosis. When he was 12 years old he was hospitalized with Guillain-Barre which didn’t go away & was finally rediagnosed 6 years later as CIDP. Many years of chronic illness W/O a diagnosis intervened. In 1998 both my son and I were diagnosed with CIDP & we were both treated with IVIG. This diagnosis was changed by Los Angeles area specialists as Wegener’s/PAN later that year and our treatment began. After 20 years of this diagnosis we have both done well considering. Our lives are free of many of the drugs we’ve been treated with earlier by choice: no pain meds, no prednisone or other immune suppressants other than a choice to resume Rituxan treatment as needed. We work hard to exercise as much as possible, maintain an anti inflammatory diet & healthy body weight.Hope this helps.