NeuroVoices: Adam S. Rappoport, MD, on Collaborative, Evolving Approaches in Pediatric Sleep Medicine

Adam S. Rappoport, MD

(Credit: Nemours Children's Health)

Pediatric sleep medicine continues to evolve as clinicians and researchers deepen their understanding of how sleep disturbances affect children's development and overall well-being. It has become more widely known that common disorders such as insomnia, narcolepsy, and obstructive sleep apnea (OSA) can lead to significant cognitive, behavioral, and physical health issues if left untreated. Recent research, published in the European Journal of Pediatrics, emphasized the importance of early diagnosis and intervention to prevent long-term consequences, highlighting the growing need for specialized care across medical disciplines.¹

Building on this foundation, new diagnostic tools and therapies are expanding the options available for children with complex sleep disorders. For example, adenotonsillectomy remains a frontline treatment for pediatric OSA and has shown benefits beyond sleep, such as improving cardiovascular health.² In parallel, FDA approvals of pediatric-specific therapies—like sodium oxybate (Lumryz; Avadel Pharamaceuticals) and pitolisant (Wakix; Harmony Biosciences) for narcolepsy—reflect a growing emphasis on age-appropriate treatments that address central disorders of hypersomnolence.³ Together, these advancements signal a more tailored and collaborative approach to pediatric sleep medicine, a theme explored further in a recent conversation with Adam S. Rappoport, MD.

In a new iteration of NeuroVoices, Rappoport, director of sleep medicine at Nemours Children's Health in Florida, highlighted the evolving landscape of pediatric sleep medicine, emphasizing the importance of multidisciplinary collaboration and family-centered care. He discussed how newer treatment options, such as the hypoglossal nerve stimulator for children with Down syndrome, are improving outcomes for patients with sleep apnea who are not candidates for traditional therapies. Additionally, he expressed optimism about emerging diagnostic and therapeutic options for narcolepsy and idiopathic hypersomnia in children, reflecting a broader shift toward pediatric-specific research and innovation in sleep medicine.

NeurologyLive: What's been the biggest shift in your clinical practice in recent years?

Adam S. Rappoport, MD: As a neurologist doing sleep medicine, I feel like one of the most important things that we can do is work with our colleagues in other divisions and fields of expertise. Here at Nemours, we work with psychology, pulmonary, ENT—we work with many different divisions together to provide the best health outcomes for kids. I think that's the single most important thing that we can do is lean on our colleagues with specialized expertise to get the best outcomes possible.

How do you typically navigate complex treatment decisions with younger patients who may have sleep disorders such as insomnia, narcolepsy, or sleep apnea?

I think the most important thing to do is have a candid conversation with families. When we're talking to families, we're not just talking to the patients; we're also talking to their parents, siblings, grandparents, and whoever else is around. The most important thing to do is discuss what the evidence suggests are the best treatment options for their kids, and then also talk about the pros and cons of these decisions.

There are often multiple choices for how to treat certain conditions, whether we’re treating insomnia in children with autism, intellectual disabilities, or developmental delays, or talking about different therapies for sleep apnea—whether it’s CPAP, BiPAP, high-flow nasal cannula, or newer treatment modalities like the Inspire hypoglossal nerve stimulator. The important thing is to have a candid conversation with families and discuss the details, so they can understand what decision they’re making for their own children.

What kind of tools or strategies have made the biggest difference in your day-to-day practice?

The newer therapies for sleep apnea have really helped a lot of children. For kids, the primary treatment in most cases is tonsil and adenoid removal—an adenotonsillectomy. We work with our ENT colleagues to pursue that surgical option for sleep apnea.

In adults, we normally go to CPAP first. If that's ineffective, then we go down the list of other treatment options, like surgery. But the opposite is true for kids—we typically start with an evaluation with our ENT colleagues for possible removal of tonsils and adenoids. If that’s ineffective, or just not a good option for families for whatever reason, we need additional options. Traditionally, we use things like CPAP, BiPAP, or high-flow nasal cannula.

Now, for a very specific patient population—children with Down syndrome who meet certain age criteria (they have to be 13 and over)—we use Inspire, which is the hypoglossal stimulator. It’s an implantable device that can help children with Down syndrome and sleep apnea who can’t tolerate CPAP or BiPAP and have been unresponsive to things like surgery.

It’s a very interesting option, and I’m hoping the evidence shows that it’s effective in more than one patient population. I’m hopeful, because it is very difficult for kids. I mean, if you can imagine yourself, your parents, or your grandparents using CPAP or BiPAP—it’s not easy. So imagine that for a 5-year-old, a 10-year-old, or a 15-year-old. The more treatment options that come out in the future, the better—it’s going to be super important to treat these kids with sleep apnea, and this is one of them.

So, it’s a hypoglossal nerve stimulator, and basically what it does is, it’s an implantable device that stimulates the tongue and associated muscles to open the airway. It monitors breathing and, in sync with the breath, helps protrude the tongue, which opens the airway and improves breathing.

Children with Down syndrome often have a different set of reasons for sleep apnea—whether it’s hypotonia, macroglossia, or other factors like larger neck size, larger abdomens, and elevated BMI. So, it’s not always as simple as just taking out the tonsils or lingual tonsils. When it comes to kids with Down syndrome, it’s good to have alternative options.

Is there anything that you're looking forward to in the field this year for pediatric sleep medicine?

One of my favorite fields in sleep medicine—or one of my favorite diagnoses, rather—is narcolepsy. We often find that evaluations and treatment modalities go through FDA approval more for adults, for obvious reasons, than for children. But in the past year, we’re seeing more and more treatment options coming through for kids with narcolepsy—type 1, type 2, or even idiopathic hypersomnia.

I do feel like there's more awareness of these conditions. I feel like we're diagnosing children more and more with central disorders of hypersomnolence, and so it’s becoming increasingly important that we have more treatment options than the traditional stimulants and wake-promoting agents that we typically use. I’m excited about what’s coming on the horizon.

On top of that, we've been able to see new evaluation modalities. It’s not necessarily new, but we’re using them more frequently—things like cerebrospinal fluid evaluation for orexin or hypocretin, as opposed to the traditional sleep studies and the multiple sleep latency test, which is the gold standard for diagnosing narcolepsy or idiopathic hypersomnia.

So, we are working toward more evaluation options and treatment options for narcolepsy and idiopathic hypersomnia, and I’m excited to see what’s coming out in the future. There's always more research being done, but again, a lot of it is primarily focused on adults, and I’m hoping that that translates into working more with children.

Transcript edited for clarity. Click here to view more NeuroVoices.

REFERENCES
1. Gemke RJBJ, Burger P, Steur LMH. Sleep disorders in children: classification, evaluation, and management. A review. Eur J Pediatr. 2024;184(1):39. Published 2024 Nov 23. doi:10.1007/s00431-024-05822-x
2. Redline S, Cook K, Chervin RD, et al. Adenotonsillectomy for Snoring and Mild Sleep Apnea in Children: A Randomized Clinical Trial. JAMA. 2023;330(21):2084-2095. doi:10.1001/jama.2023.22114
3. Shelton AR. Sleep Disorders in Childhood. Continuum (Minneap Minn). 2023;29(4):1205-1233. doi:10.1212/CON.0000000000001285