“I’ll never forget one night when she was crying in pain and rocking back and forth in her little rocking chair and said, ‘God, why won’t you help me? Mama, please help me!’”
Amanda Vizier, of Jackson, Miss., endured an eight-month nightmare trying to find a correct diagnosis and treatment for her daughter, Chloe, now 8 years old.
On Chloe’s sixth birthday, in 2010, she developed a rash. The doctor said it was probably some virus, and not to worry about it.
Within a couple of days, she started running a fever and we went back to the doctor. Chloe was diagnosed with Rocky Mountain spotted fever and went on antibiotics, but they didn’t help. For more than three weeks she had a fever of 104. She developed abdominal pain, she started limping, her rash was itching and she was screaming in pain. She ended up in the hospital for a few days. Over months of testing, doctors ruled out cancer, lupus and even juvenile arthritis. After all, her joints weren’t swollen.
She was diagnosed with strep throat, then with chronic hives. An allergist asked if she was just anxious.
I knew we needed to go somewhere else. We waited months for an appointment, and finally saw a pediatric rheumatologist at a new hospital who said, “I think she’s got systemic JIA. Try her on Kineret (anakinra) and if it works, that’s what she’s got. She’ll feel better within a couple of days.”
That was eight months after her first rash appeared. Within three days she had absolutely no symptoms, and knowing what she really has was such a weight lifted. She was very close to going into organ failure. If we had gone another month, it would have been a totally different situation.
Now she’s doing great. She can sleep and she can play. She wants to be a model and do drama. And I’m so excited now that her friends and teachers know who Chloe really is, instead of just knowing her as a sick child.