The Only Pediatric Positive Airway Pressure Desensitization Program in Illinois Expands

The Division of Pulmonary and Sleep Medicine at Lurie Children's is home to the only multidisciplinary pediatric PAP desensitization program in Illinois. This clinic is led by Maria Gonzalez, APRN-NP, FNP-BC; Tiffany St. James, APRN-NP, PNP; and Allison Clarke, PhD, a Pediatric Sleep Medicine Psychologist. The clinic’s mission is to improve adherence to positive airway pressure (PAP) therapy among children requiring treatment for chronic respiratory failure and/or obstructive sleep apnea.

This innovative program takes a comprehensive approach, addressing the clinical, technical, and psychosocial barriers that can impact therapy success. Through regular follow up visits, early troubleshooting of PAP related challenges, and strong family support, the team helps patients build comfort and confidence with PAP therapy- ultimately enhancing respiratory health, treatment compliance, and quality of life.

The clinic originally launched as a monthly four-hour session and has since expanded to a three-time monthly occurrence. Patients with complex multidisciplinary respiratory needs, including patients with craniofacial abnormalities, neuromuscular disorders, chronic respiratory failure and obesity can benefit from this program. The clinic’s structured approach supports improved tolerance and adherence to device use, guiding patients toward consistent daily usage.  Dr. Clarke described, “When we take the time to get to know kids and their families and use their favorite toys and characters as we play with the equipment together, we see kids move from fear of the unknown to having fun with their medical equipment.  I love the moments when you can see families develop hope that their kids can eventually get comfortable with the device.  This hope, alongside in vivo practice, then helps them build ideas for how they can practice with the device at home, in between visits.”  Once children are using the device almost every night for the majority of the night, they graduate to follow up every 6-12 months. The program has already graduated numerous patients who have achieved this milestone, says Maria Gonzalez, APRN.

Upon graduation, certificates are issued to those patients who have met their device usage goals. Setting goals and rewarding the patient with a certificate of completion helps with the motivation. This model has not gone unnoticed. Dr. Clarke and her team were asked to speak on the success of the program on a national stage through Parent Project Muscular Dystrophy, the largest muscular dystrophy organization in the nation. The response has been astounding. The team has received requests for implementation guidance from other providers as well as from parents with children using PAP desensitization.

For Angel, a 9-year-old boy with a rare type of muscular dystrophy called COL6A2 collagen myopathy, wearing a mask overnight was intimidating at first. In May 2025, Angel’s desensitization training became vital to his survival. After undergoing extensive orthopedic surgery for his collagen myopathy, complications during recovery led to water accumulation in his lungs. Angel had to wear his BiPAP 24/7. During this time, Angel’s desensitization training was put to use. Read Angel’s story.

Watch Webinar on BiPAP Compliance