For Denise, one of the hardest parts of her daughter’s illness has been the uncertainty that she is doing everything possible for her child. “I want to know why certain doctors pick certain medications,” she says. She reads online and talks to other parents whose children may have the same diagnosis as Emma but are being treated with different therapies. “Maybe there is no answer, but we wish there were more data or information regarding comparative outcomes for parents to read and understand.”
The uncertainty and fears that come in the middle of the night, along with a parent’s reluctance to “bother the doctor,” are common themes for these parents. Ms. Krauss hesitated when her son turned 3 and his disease was flaring to call the doctor, not realizing that she could have an “open line of communication” with his rheumatologist, that she should call him if there was new pain. Now she knows that she can call Dr. Moore at any time and he will always call back.
Ms. Krauss knows she is lucky with the insurance plan that she has, given the high cost of the infusions that Waylon needs, but she also knows that other parents are not so lucky. “Doctors have to realize the cost of these drugs. I hope there are options out there to help pay for these infusions, because if that’s what your child needs, you are going to do it whether you can afford groceries or not.”
Looking back at the early days of their children’s illnesses, these parents most remember pain, confusion and frustration, and say they could really have benefited from a crystal ball to prepare them for what was yet to come. They continue to search for information, and each has joined some type of network with people who understand their worries and questions, including the Arthritis Foundation; Pediatric Rheumatology Care and Outcomes Network or PR-COIN, a network of rheumatologists, nurses, therapists and parents; InspiRAtional Moms, initiated by Genentech to help raise awareness of the challenges of living with or care for a child with juvenile idiopathic arthritis; and social media outlets.
According to Ms. Wilder, parents need more written information, particularly at the beginning of their child’s diagnosis. “Just to have something in your hand, tangible, that can give you an idea of what it’s going to be like, that you can turn to when it’s 3:00 in the morning and you are flipping out.”
