Navigating care for a medically complex child

Managing the health care of a child with complex medical issues is challenging, even for the most organized parent.

To help a child achieve their potential and receive the best care, parents (or the child’s main caregiver) need to develop a system of outlining medical concerns in addition to tracking appointments, test results, medications, treatments and opinions from health care professionals, says pediatric otolaryngologist Dr. Dana Suskind.

As associate professor of surgery and pediatrics director for the Pediatric Cochlear Implantation Program at the University of Chicago Comer Children’s Hospital, Suskind understands how overwhelming a new diagnosis can feel.

“With a new diagnosis, parents can be timid at first and that’s OK,” she says. “As a physician, you see parents grow and develop. Soon they are experts in the field and the diagnosis will become less overwhelming and a part of their lives.”

Taking control

One way parents can monitor their medically complex child’s care is by creating a medical home, the American Academy of Pediatrics advises. A medical home is accessible, continuous, comprehensive, family-centered, coordinated, compassionate and culturally effective medical care in which one doctor serves as the primary care physician. The primary doctor speaks with other members of the medical team, talks with the family about concerns and helps them understand their child’s options.

Oak Forest mom Maggie Boyce is creating a medical home for her son Tommy, who has many health problems including an inability to breathe without the help of a ventilator. (For Tommy’s full story, see sidebar).

Boyce says she is hopeful that a medical home will improve communication between all of her son’s medical team members. A majority of Tommy’s doctors are located in Cincinnati; however, because Tommy’s primary health issue is life threatening, the Boyce family has doctors in Chicago, too.

Communication is key

When seeking medical experts, Suskind suggests parents work with professionals they can communicate with.

“Choose a physician who understands your concerns and is intuitive, good natured and kind,” Suskind recommends.

Everybody has busy days, but sometimes even doctors need to be reminded to slow down and listen, she adds.

“Never feel you can’t say something to your doctor or that you can’t ask a question. You are your child’s best advocate,” Suskind says.

Ask your specialists to communicate with other specialists on your child’s care team, especially before a surgery or another procedure.

“If the doctor doesn’t suggest it, ask him or her, ‘What can I do to help you speak with my child’s team of physicians?’ “

Early intervention is the key to helping a medically complex child live their life to the fullest, Suskind says.

“The more information you get, the better. Parents make the biggest difference,” she says.

Western Springs parent Cara Long agrees completely. Her daughter Maggie was born with Down syndrome.

“As a baby she was N-G (naso-gastro) tube fed and she had home oxygen. She had heart surgery at three months and was hospitalized for a long time after that,” Long says.

Maggie Long, now 12, is past the complex serious problems she faced as an infant and through her childhood. Yet, the preteen still needs to follow up with a number of specialists for her checkups, Long says.

Tracking the large amount of history and paperwork a medically complex child creates is a job in itself, Long says. She suggests parents create a checklist to track the varied information. “There is no way you can remember everything.”

For some families, an Excel spreadsheet works well. Long places the information school administrators, teachers and support staff need about her daughter in a folder. Then she created a similar folder with pertinent health and doctor information to leave for the sitter.

Organizing the bills of a medically complex child can be overwhelming too. Long uses a notebook and Excel spreadsheet to manage that piece of Maggie’s care.

Planning for the future

Detailed and thorough patient history is a crucial piece of follow-up care whatever the medical condition, says Dr. Tara Henderson, who treats adult survivors of cancer and serves as the director of the Childhood Cancer Survivors Center at the University of Chicago Hospitals.

In many cases a medical home is needed for a lifetime, Henderson says.

“Develop a summary to have on file and to take to every doctor you see. Explain the diagnosis, offer the details and give a sense of what has happened and why. This summary should include all treatments-type of treatment, duration and place of treatment-a list of medications taken and a description of the course of action taken,” Henderson advises. “Update all medical records yearly.”

Because of the multiple and varied health concerns brought about from childhood cancer, she has several specialists participate in adult aftercare. These professionals include an endocrinologist, a cardiologist, a reproductive endocrinologist and a psychologist.

When following adult survivors of childhood cancer, Henderson also screens the patient herself. She is up to date on the effects of treatments and medications and can advise her patients of the long-term effects. However, all patients need a primary caregiver-in the case of children, often it is the pediatrician who is seen for colds, bumps and other illnesses.

Always have an informative but brief medical summary in hand when seeing any doctor, she adds.

“It is important for patients and their parents to have their own patient summary,” she emphasizes. “They need that summary for life.”

Polly Stanoch Rix is a freelance writer who lives in Downers Grove with her husband. She has two children.

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