Abstract Introduction Children with Down Syndrome (DS) have a high prevalence of obstructive sleep apnea (OSA), are at higher risk of residual OSA after adenotonsillectomy, and frequently struggle to tolerate continuous positive airway pressure (CPAP). FDA approval of hypoglossal nerve stimulation (HNS) for patients with DS ≥13 years in March 2023 opened a new care pathway. Our Pediatric Sleep Medicine department was an early adopter and developed a systematic method to assess HNS candidacy based on manufacturer inclusion criteria. Our initial experience identifying and recruiting candidates offers insights into the benefits of and barriers to integrating HNS into care for this population. Methods We performed an electronic medical record (EMR) review of all pediatric DS patients seen in our Pediatric Sleep department from January 2019 to November 2025. Extracted data included demographics, polysomnography, surgical history, CPAP use metrics, Drug-Induced Sleep Endoscopy (DISE) findings, and HNS implantation, activation, and titration records. For patients who met inclusion criteria but declined HNS, clinic notes were reviewed to better understand decision-making. Results Across our institution, 1,326 pediatric DS patients were identified, 271 of which were seen by Sleep Medicine and had polysomnography. Among these, 184 had moderate (117) or severe (67) OSA. Adenoidectomy and/or tonsillectomy was performed in 161 cases. Seventeen patients underwent formal CPAP titration studies. However, CPAP compliance and efficacy data were available for 127, likely reflecting empiric Auto-CPAP initiation. DISE reports were available for 27 patients. Eight patients met all manufacturer inclusion criteria for HNS. Two proceeded with HNS implantation, activation, and titration, both reporting subjective improvement in sleep disordered breathing symptoms. Conclusion This review describes the experience of one of the earliest pediatric programs to integrate HNS into care for DS patients with persistent OSA. As expected, residual OSA after adenotonsillectomy was common and often led to CPAP use, with varied success. Early outcomes demonstrate that HNS offers a promising alternative for patients who struggle with CPAP and meet criteria. To better serve patients with DS and their families, our program is committed to continuing to learn about identification of candidates and deepening understanding of barriers to choosing this treatment modality. Support (if any)
Donskoy et al. (Fri,) studied this question.