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Exploring HIE and Sleep: Q&A with Dr. Renée Shellhaas

July 11th, 2024  | HIE Education  | News  | Research  | Resources

 

After hearing from thousands of families that sleep issues are one of the top unmet needs of our community across all outcomes and impacts, Dr. Renée Shellhaas, a pediatric neurologist and researcher, principal investigator of the Neonatal Seizure Registry, and one of Hope’s esteemed Medical Advisory Board members, and her team launched a survey for our community that aimed at understanding the sleep challenges faced by children with HIE. The response was overwhelming—more than 200 parents and caregivers eagerly shared their experiences and outlined what matters most to them in research.

This outpouring of participation highlights the urgency and importance of this research, and now, a few months after this survey has concluded, Dr. Shellhaas met with Hope for HIE to delve into their findings and share what the future of this research looks like.

Missed the live stream Q&A? No worries. We took notes, and like any good partner, we are willing to share! Read our key takeaways below.

For children with HIE, sleep issues can stem from a variety of factors.

Our brains are master regulators of our sleep; they control nearly every aspect of it — from falling asleep to staying asleep and even regulating our breathing while we sleep. For children with HIE, whose brain functions may look different after suffering a brain injury, these differences often lead to sleep issues, sleep disorders, and disrupted sleep patterns.

Our body’s muscle tone can also affect sleep. Muscle control is essential for keeping airways open during sleep, so any variations—like a high tone in those with cerebral palsy or those with lower tone —can and do impact their breathing, sometimes causing sleep breathing problems and sleep apnea.

Behavioral challenges also play a role in how we sleep. A child’s temperament, medical conditions, family interactions, sleep environment, and even their anxieties about their condition can make it harder for them to get the rest they need.

Dr. Shellhaas knows very well that sleep is a major issue for children with HIE, but she wants families to know that while problems are common, many of them are treatable. With the right intervention and support, many children with HIE can achieve better sleep, improving their overall quality of life.

Patient-family input is at the forefront of Dr. Shellhaas’ sleep study and her team’s research efforts.

The idea for this sleep survey came directly from conversations with families in the Hope for HIE community. Many parents have consistently shared that sleep is a significant issue for their children with HIE. Noticing the need for more data on this topic, Dr. Shellhaas and her team at WASHU started thinking about how they could delve deeper into the problem.

Having previously developed a successful study model funded by the Patient-Centered Outcomes Research Institute (PCORI) that focused on understanding and improving outcomes for children with neonatal seizures and conducting a similar survey funded by the National Institutes of Health (NIH) which addressing sleep issues in children with myelomeningocele, a severe form of spina bifida, Dr. Shellhaas and her team saw an opportunity to apply similar methodologies to research within the Hope for HIE community.

And that’s precisely what they did. In March, they launched their sleep survey to Hope’s community to gain a broader understanding of the sleep issues faced by children with HIE, identify research priorities, and gauge family perspectives on moving this study forward to yield potential interventions to improve sleep for this vulnerable population.

If you were not able to take this survey, or if you need reminding, here are just a few of the questions they posed:

  • What are your top priorities for research?
  • If doctors and researchers could address specific questions for you, what would those questions be?
  • Are you worried about your child’s sleep patterns?
  • Has your child been diagnosed with any breathing problems, such as sleep apnea?
  • Have your healthcare providers ever discussed sleep issues with you?
  • Have you undergone a formal sleep evaluation as part of your child’s care?

Community feedback and responses highlight an urgent need for further sleep research.

Not surprisingly, our community responded enthusiastically to the survey — over 200 parents participated in just two weeks, showing just how eager our community is to contribute to research that can make a difference.

While 200 responses are a great start, Dr. Shellhaas and her team know this is just a fraction of the affected families. Those who responded likely did so because sleep is a significant issue in their household, making for slightly skewed data, especially since nearly all respondents identified sleep as the number one gap area and research priority. So, it’s important to note that these findings serve as a starting point, but more research needs to happen to better understand the problem.

One of the most striking findings was that nearly 90% of parents believe their child has a sleep issue…

but 20 percent said their healthcare providers never addressed these potential concerns during clinical follow-ups. Now, we can reverse that number with a glass-half-full mindset and say that 80% of medical personnel out there are initiating these important conversations, but 1 and 5 are still too large a number of children not receiving the attention and potential interventions they need to address this issue.

About 35% of parents said their children snore or show signs of sleep apnea, which is characterized by brief or sustained pauses and irregular breathing.

Of these children, 14% have officially been diagnosed with sleep apnea. This is an important issue to address because interrupted breathing can lead to dips in oxygen levels, further affecting brain development. Treating sleep apnea has been shown to improve behavior and self-regulation in neurotypical kids, so it’s not unreasonable to hypothesize that the benefits could be even more significant for children with medical vulnerabilities like those with HIE.

Around one-third of families reported that their child had undergone a sleep study, indicating awareness and proactive steps toward treatment, but as we know well, there’s still a lot more room to better identify and manage sleep-related concerns among our population of children.

Besides sleep apnea and disrupted sleep patterns, parents shared many other common concerns about their children’s sleep. Many said their child has never had a good night’s sleep. They talked about challenges with bedtime routines, difficulties getting their child to go to bed, and constant disruptions throughout the night. Some kids stay up all night and sleep during the day, showing a different natural rhythm; others are up because of seizures that interfere with their sleep.

The nature of this survey did not delve deeply into how sleep issues vary based on children’s age, severity of HIE, and their various impacts; to do so would require details about each child’s medical history. But, surveys like this do spark new ideas and questions; Dr. Shellhaas, for instance, currently hypothesizes that some children may be more vulnerable to experiencing sleep issues as they grow.

Potential treatment and intervention all start with a conversation and diagnosis.

It all starts with getting a diagnosis, which begins by talking to your child’s pediatrician or neurologist. Ask about obstructive sleep apnea (where you try to breathe but air doesn’t go in due to a blockage) or central sleep apnea (where the brain fails to send the proper signals to the muscles that control breathing, resulting in short periods where breathing stops altogether). Doctors can use surveys to screen for risks, but the gold standard is to conduct a sleep study.

Dr. Shellhaas knows that taking this step can seem like another item to add to your checklist, but if it’s within your bandwidth, she recommends taking the appropriate steps because many sleep problems are treatable. The treatment plan will depend on the type of issue your child presents. For many older children, having their tonsils and adenoids removed can help regulate breathing better at night, whereas younger children who don’t have large tonsils might need supplemental oxygen instead, which can often be administered with equipment.

Sometimes, it’s not just about medical treatments; psychological strategies can make a big difference, too. Sleep-focused psychologists, while rare birds, are highly trained in assessing and addressing the behavioral aspects of sleep problems. They can help develop strategies to improve sleep hygiene, manage sleep-related anxiety, and implement behavioral therapies that promote healthier sleep patterns for your child.

And for some children, medication might be a treatment option to help them fall and stay asleep more easily, but these are all decisions you and your family can make after understanding your options and discussing them with your child’s healthcare team.

The future of sleep research is bright

So, what’s next? Dr. Shellhaas and her team have developed and submitted a research funding application focusing on finding early ways to check and manage sleep issues in children with HIE. Getting funding, as we all know, can be challenging, but having solid partnerships with advocacy organizations like Hope for HIE can make for a strong case. In the event that the first proposal is not accepted, their team will use the feedback to modify it and submit it for another shot at securing funds.

What they can guarantee is the involvement of Hope for HIE families. If and when that funding is granted and research progresses, they will bring parent perspectives from Hope and study centers around the nation. It all comes down to receiving that funding, establishing those study centers, and getting families ready to enroll their kids in their research efforts.

… but there’s current work happening, too!

A few years ago, the Neonatal Seizure Registry started investigating whether discontinuing seizure medication after neonatal seizures are controlled and before leaving the hospital affects the child’s development or the likelihood of developing epilepsy by age two. You can see the results of this study here.

Now that these children are of school age, the NSR received funding from the NIH to track their progress and outcomes, including sleep. They surveyed over 100 families, half of whom have children with HIE, about their sleep habits and behaviors, and what they found was pretty eye-opening: about two-thirds of these families noticed abnormal sleep patterns in their children, and a quarter of them showed signs of sleep apnea by age 5.

While this survey did not explore the specific types of sleep evaluations that these families performed or did not perform, it did reveal that sleep problems are common, especially among kids with conditions like CP or epilepsy, further driving home why doctors should ask about how kids sleep during their regular check-ups.

There are reliable resources to learn more about sleep issues and their potential interventions.

The first step is to reach out to your child’s pediatrician, family doctor, neurologist, pulmonologist, or pediatric sleep specialist to initiate a conversation and ask about the next steps.

But we know those appointments don’t always have a quick turn-around, so in the meantime, here are some reliable resources Dr. Shellhaas recommends to learn more about sleep issues, safe sleeping practices, and potential treatments and interventions to improve them:

  • The American Academy of Pediatrics (AAP) provides helpful information for parents looking for advice on baby sleep. Their website gives evidence-based tips on setting up a good sleep space, starting bedtime routines, and handling typical sleep issues babies might have. They also talk about managing changes like moving from crib to bed and have tips on dealing with sleep problems that might present in early childhood.
  • BabySleep.com has practical tips on setting up good sleep habits, recognizing your child’s sleep symptoms, and solving problems like nighttime wake-ups or getting them to sleep through the night.

To watch the full live stream of this Q&A, visit our YouTube channel below, or click on our Key Takeaways for an at-a-glance view of this session!

 

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