Our daughter Emma was diagnosed with Juvenile Arthritis 5 years ago at the age of 4. We first noticed that her right elbow was swollen and had a limited range of motion almost three months before a rheumatologist finally diagnosed her with juvenile arthritis. During that same time, Emma had been sent home from school for conjunctivitis (pink eye), and had been complaining of pain in her eyes and of seeing “sparklers” at bedtime. In hindsight, these were all symptoms of the inflammation already present and doing damage in her eyes.
Our rheumatologist referred us to a pediatric ophthamologist who had little experience with uveitis, and started Emma on a regimen of oral and topical steroids. To her credit, within a few weeks the doctor recognized that Emma’s case was beyond her scope of care, and we were referred to a retinal specialist who remains a core part of Emma’s medical team. By then, Emma’s vision had deteriorated significantly from the combination of active inflammation and persistent steroid use. She was developing cataracts in both eyes that would need to be removed.
Emma’s retinal specialist, Dr. Connor, quickly stepped her up to methotrexate to get the inflammation under control. After 6 months of treatment which included a series of steroid injections around her eyes, Emma’s inflammation was still present and Dr. Connor recommended adding Remicade. As parents, we had already struggled with the decision to treat Emma with a medicine as strong as methotrexate. The thought of monthly infusions, and the potential risks and side effects of Remicade, seemed overwhelming.
As we tried to do our own research about uveitis and its treatment, we came across the Parents’ message board at www.uveitis.org. The support, understanding and knowledge from other parents was invaluable; it was comforting to know that other parents had traveled the same road before us. Most importantly, we became convinced that we needed to seek Dr. Foster’s opinion about Emma’s care.
Our journey to Boston from Wisconsin was so valuable. Dr. Foster agreed with Dr. Connor’s recommendation to add Remicade, and educated us on his protocol for a durable remission: two years, off all steroids, before trying to taper medications. We knew we were in for a long road ahead. Thankfully, the Remicade put Emma’s uveitis into remission almost immediately. Once her eyes were quiet for three months, we returned to Boston for Dr. Foster to remove the cataracts and give Emma lens implants. That year, we made 7 trips to Boston, including two multi-week stays for her surgeries.
Since her surgeries, Emma’s vision has consistently been 20/25. She needs a strong reading prescription, but can otherwise function very well without glasses. The inflammation in her eyes has not returned; unfortunately, we have been unable to taper her completely from her medications, as her arthritis symptoms have reoccurred.
Emma continues to make annual visits to Dr. Foster, and he remains an active part of her medical team by collaborating with her local doctors in deciding the best course of action for her care. When she had the onset of new arthritic symptoms that went unrecognized and untreated by her rheumatologist this past year, we turned to Dr. Foster for advice. He arranged a referral for Emma to visit a pediatric rheumatologist in Boston, whose second opinion led to a revised diagnosis. We ultimately chose to switch rheumatologists, and have found a local doctor who is consulting Dr. Foster in constructing a new treatment plan that addresses both her arthritis and her eyes.
Dr. Foster’s responsiveness to our concerns and willingness to work with her local team of doctors cannot be overstated; his dedication to his patients is simply unparalled, and having local doctors who are willing to accept his input is absolutely necessary, even when it has meant changing doctors. In addition, events such as the pediatric uveitis conference have educated us about the latest treatment protocols while connecting Emma with other children battling the disease. We have no doubt that our treks to Boston have resulted in superior care for Emma and have preserved not only her eyesight, but her quality of life.
