6. Find out about satellite locations. Traveling to a major metropolitan area—where the majority of the nation's top hospitals are located—is not the only way to get access to their care. Many of the best children's hospitals realize their reach is somewhat limited, so many offer appointments, and often treatments, at offices and community hospitals deep in the suburbs or in rural areas. While families regularly travel great distances to get the best care for their children, such upheaval can exact a severe toll. "Even 50 miles can be debilitating to a family socially and economically," says Siegel. Childrens Hospital Los Angeles, for example, has had a full-time hematologist-oncologist stationed at a community hospital in Ventura, Calif., about 60 miles from L.A., to provide both inpatient and outpatient care. But, says, Siegel, the necessary support staff is lacking in such settings, so depending on the severity of your child's case, travel may be required.
7. Seek out advocacy groups. Many foundations and disease-specific advocacy groups have grown up around the need for families and clinicians to engage about research funding, public policy, and clinical questions. But be aware that not all groups are created equal; some are influenced greatly or funded by drug companies. The National Organization for Rare Disorders keeps a list of some 2,000 condition-specific patient groups that it considers trustworthy to which it refers families and individuals. They "cannot be political," says Stefanie Putkowski, registered nurse and clinical information specialist at NORD. "They're vetted by us."
8. Get help from other parents. But start slowly and get your bearings first. Families reeling from a brand new diagnosis may want to hold off before contacting parent groups or getting involved in online message boards. "You have to get savvy first," says Britto, who suggests getting some baseline knowledge—from your child's pediatrician, say, or trusted academic websites. This way, says Britto, you can gauge whether the experiences shared by families online are extreme or typical.
Once you're ready, reach out. Connecting families who have children with the same rare disease is "one of the best things we do,"saysPutkowski. Not only is some of the isolation alleviated, but valuable information may be shared, from an experimental treatment option to the name of that needle-in-a-haystack specialist with an interest in the rare disease. Another resource is Parent to Parent USA, which matches families with shared experience.
9. Find the services for your whole child. To a far greater extent than medicine practiced in adults, pediatrics must consider a young patient's stage of development. In adolescents, for example, there is a set of unique developmental concerns that are separate from the disease but must be tended to in order to ensure their wellbeing and cooperation in their care. "Their sexuality, plans for education, social interactions—they usually have complex relationships with their parents at that age—all those things need to be taken into account," Siegel stresses. Adult specialists and hospitals don't necessarily have the training or resources to address the range of developmental needs in young patients.
Find out what is available. Children's hospitals regularly offer services including tutoring, visiting musicians and dogs, social workers, and child life specialists, who are trained to tend to emotional and developmental needs of the child, parents, and siblings. Lynnie Reid, who has had considerable experience over the years with the ups and downs of pediatric care, has the utmost admiration for the child life specialists at Boston Children's Hospital: "I think they're begotten, not made. They are able to bring my kids out of the space of identifying with the illness and remember they're a kid."