Our lives changed June 2007, when our almost 3 year-old daughter Amia, started running high fevers. At first we thought she was just sick, yet when she kept having high fevers, I knew something wasn’t right.
While we had blood work completed, I researched her symptoms on the computer with every spare second I could find. After almost 2 yrs of Amia running high fevers every 4-6 weeks, along with serve body pain, leg pain, belly pain, mouth sores, swollen neck glands and intense throat pain that would last 3-5 days each time, our pediatrician finally got on board and we started our long journey to a diagnosis. We visited many different doctors and Amia was subject to a myriad of tests, before we determined her final diagnosis of PFAPA.
Periodic Fever, Aphthous Stomatitis, Pharyngitis, Adenitis Syndrome (PFAPA) is a rare periodic fever disorder that currently has no definitive testing available or cure. Because there is little known about the disease, the diagnosis is usually based on symptoms and treatment.
We have tried different medications to help control the cycles. Prednisone is a life saver because within 1 -2 hours of this dosing, her fevers and symptoms are gone. And, we love to see her, once again, a happy normal second grader who loves reading and animals and who wants to be a Zoo Keeper – despite her diagnosis!
Our hope for Amia and others like her is for more research, answers, and one day maybe a cure. It pains us to see her suffer with temperatures as high as 105, with body and leg pain and all her mouth sores. Our hope is she will continue being the bright, energetic beautiful person she is now and overcome this horrible unknown disease.