Tori’s mother, Karen, wishes she had known about antibiotic therapy (often referred to as “Antibiotic Protocol” or “AP”) for rheumatic disease when her daughter was diagnosed with juvenile rheumatoid arthritis (JRA) at the age of 19 months. “Tori had been ill with a respiratory infection (ears, throat, etc.),” she remembers. “Once this cleared up she had re-occuring fevers each day, a migrating rash and episodes of limping. By the time she was two, she had arthritis in her knees, ankles and wrists.”
Despite all the traditional medications, Tori was prescribed, her disease was relentless. However, after a year of some symptomatic relief from one of the newer medications on the market, a sore throat sent her into a tailspin and nothing would bring her out of the severe flare.
Fortunately, that was when Tori’s parents read about antibiotic therapy being used for rheumatic disease and sought a physician who would begin their daughter on the treatment. But it didn’t happen right away. By then, Tori had progressed into a rare complication of her disease (macrophage activation syndrome) and nearly lost her life. She came through a very tough time and began AP, but had to stay on her traditional medications as well. She had a bilateral hip replacement at the age of 10.
It’s very difficult with a child,” Karen says. ” Tori’s disease is very severe and by now she has had it for more than 80% of her life. We were told antibiotic therapy may not completely work for 3-5 years – while waiting, it’s important to do whatever is necessary to prevent joint damage. Her outlook and spirit are incredible. She has endured so much yet always has a smile on her face.
Karen looks forward to the day when Tori’s illness is completely under control and she is no longer on any traditional medications. “Hindsight is always 20/20, but the most important thing I’ve learned is to hit the disease with Antibiotic Protocol early in it’s onset. If I’d known about AP when Tori first became ill, I would have probably avoided most of this journey.”
“It’s also making these decisions for your child,” she says. “You don’t want to cause them any harm or put them through unnecessary pain – yet in your heart you know all the traditional meds will not completely work – the disease comes back with a vengeance with each flare and you find yourself moving up the drug ladder.”
Tori’s story inspires us all to work harder to inform the public about antibiotic therapy. Parents are entitled to have additional treatment options when their children are facing the very painful battle of rheumatic disease.