Helping kids lead normal lives
We know that when a child is frequently ill, everyone in the family is on the health care journey, too. That’s why we promote education for everyone and provide opportunities for families and children to connect with other individuals in similar situations. Such opportunities include national patient partner programs and local events specifically for patients and families with primary immune deficiencies.
The quality of life of all involved, starting with the patient, is a top priority. We work hard to coordinate appointments with other Children’s specialists to minimize disruptions to work and school schedules.
If at all feasible, children may receive therapies in their homes or an infusion center that’s more convenient than the hospital. We partner with our infusion units and pediatric home care services to maximize the time for kids to be kids and engage in their daily lives, emphasizing the importance of normal lifestyles. Our goals include keeping primary care doctors as the coordinators of patient care.
We’re happy to say the great majority of our patients have full schedules with school, extracurricular activities, and plenty of quality time with family and friends. We work to help kids understand their illness so that each can grow up to become a self-sufficient, healthy individual.
Taking a closer look
At Children’s, we focus on research and innovations that make a difference at the bedside. From improving day-to-day quality of life for children and teens to developing new pain management approaches and adopting new technologies, our research is kid- and family-focused.
Children’s is engaged in many types of research, including investigator-initiated studies as well as externally sponsored multicenter trials, observational studies and registries.
In the immunology program, Tamara Pozos, MD, PhD, is collaborating on a study to evaluate immune system recovery in patients who have been treated for leukemia. Her previous research has focused on the cell biology of early immune responses, and her findings have been published in nationally recognized journals such as Science. Laura Hoyt, MD, is a national expert on the care of children with HIV infection. She has a particular expertise in the biology of T cells, the most important cell for regulating the immune system.