Hoping for a diagnosis…and healing in the meantime.

    A child with an unrelenting headache or inability to move a limb would concern even the most unflappable of parents—but what if no cause can be found? As many as one in five children have unexplained physical symptoms, which commonly include persistent pain, chronic fatigue, muscle weakness or loss of muscle control and digestive problems And this is not an exhaustive list. 

    Being uncertain of what a child has, and therefore what to do about it, can take a toll on family life. Parents often feel incredibly helpless as they go from doctor to doctor in search of an answer. Family routines can quickly become a luxury no longer afforded, displaced by the demands of tending to an unwelcome new member of the family – an illness without a name. Some may even hear the unfortunately common (but misguided) sentiment equating unexplained physical symptoms to a psychological disorder. 

    Although caring for a child with unexplained symptoms can be exceptionally challenging, there are some empowering guidelines parents can adopt:

• Knowing what it is certainly not can be as important as certainly knowing what it is. Medicine often works by a process of elimination, using tests to rule out conditions that require immediate medical care rather than to rule in a diagnosis. A desire to have a label for symptoms is understandable—names confer a sense of control. But take heart – it is rare for physicians to overlook a dangerous medical condition. As Dr. Jason Newland, an infectious disease specialist at Children’s Mercy Hospital, puts it, “Many times we see children with symptoms that we can't explain, and because they are children they get better.”
• Seek a second opinion, but not a 32nd opinion. Obtaining additional opinions is strongly encouraged if your child’s symptoms continue to recur and are causing distress or disability. Obtaining serial medical evaluations ad infinitum, however, can create unnecessary anxiety and confusion. If no clear medical diagnosis is unearthed after a few attempts, the benefits of seeking further evaluations shrinks exponentially. In this case, shifting the goal of care from diagnosis to symptom management, while obtaining continued medical oversight, can be a healthful decision. Most symptoms can be adequately controlled even if their origin is never fully declared.
• Keep primary care primary. Setting up regularly scheduled primary care visits can be invaluable when your child has concerning unexplained symptoms. A primary care provider can offer continued reassurance while providing medical surveillance for a change in symptoms that would suggest a need for additional clarifying tests.
• Keep routines routine. Children especially look to parents to determine how to respond in situations of uncertainty. Parents’ natural and well-intended tendency is to offer ample nurturance when children are ill. Equally important for a child’s healing, however, is fostering a sense of personal control. Children feel most in control when their typical rhythm remains uninterrupted. Parents should strive to keep family routines and structure in place, keeping children as involved as tolerable in valued activities. For additional recommendations, visit http://www.ConnectedKansasKids.com/Parents/Skills.aspx
• Seek school support. Proactively speak to teachers and other school personnel to develop a learning plan. Even with unexplainable physical symptoms, children are entitled (often legally) to accommodations that maximize their chances of being successful in school despite the limitations their illness may impose. An excellent local resource for advocacy pertaining to school accommodations in children with chronic illness is Missouri Parents Act (MPACT; http://PTIMPACT.org/)
• Engage everyone in health. Regardless of whether physical symptoms can be medically explained or not, the body has a built-in healing mechanism that is maximized when a person eats well, sleeps well, keeps hydrated, exercises, and cultivates a calm mind and relaxed body. Setting health goals together keeps the entire family focused on wellness rather than illness. Some useful general health tips for families are available from KC Healthy Kids at http://KCHealthyKids.org/ (click on the “For Parents” tab), and a kid-friendly resource for learning helpful coping strategies is “Be the Boss of your Body” book series by Dr. Timothy Culbert and Rebecca Kajander.

Mark Connelly, Ph.D., is co-director of pain management at Children’s Mercy Hospital. He lives in Overland Park with his wife and two children.