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Sleep issues are very common with HIE (hypoxic ischemic encephalopathy), and across all outcomes. Sleep interruptions with HIE have a link to the sleep/wake cycle. We recently sat down with Dr. Chris Carosella, double-boarded Pediatric Neurologist & Sleep Medicine specialist, and Hope for HIE Medical Advisory Board member, to discuss sleep issues in children with HIE and other neurological conditions.
I am a pediatric neurologist with extra fellowship training in both epilepsy and sleep medicine. In my clinical practice, I see children and young adults with problems in both areas. My specialized interest is in seeing patients with both epilepsy and sleep disorders, which was an interest I gained from practical experience. I noted that a lot of my patients with epilepsy and/or other primary neurologic diagnoses reported difficulty sleeping. I also found that when sleep was well managed, other medical and social aspects of life got better not only for the patient but often for the whole family.
For instance, for patients with epilepsy, when sleep was treated, seizure frequency often improved. I found the combination of child neurology, epilepsy and sleep medicine to be a natural combination, as well as an underserved area which has developed into a lifelong interest.
There is no easy answer to the prevalence of sleep problems in children with HIE, but the short answer is, greater than that of the the general population. I think perhaps it is important to understand that sleep health encompasses many fields – pulmonology, neurology, psychiatry, even ENT and dentistry!
Sleep problems too can be multifaceted and children with HIE may be at higher risk for both respiratory, neurologic and psychiatric causes of sleep disorders.
Unfortunately, sleep is an under explored area in HIE, but we can take some information from other populations which overlap with HIE. For instance, there is a high proportion of sleep problems in children with neurodevelopmental disabilities, autism and ADD/ADHD. Similarly it appears that patients with HIE will often respond to the same set of treatments as other patients with neurologic injury. However, targeted sleep treatments within the HIE population are not well established. Patients should always be treated as individuals requiring a thoughtful and tailored approach.
Sleep, especially within the first year of life, is often a hard subject for parents of newborns and young children. Infant sleep schedules are tough on busy families, and this is doubly so for a family of a child with potential or known neurologic or developmental issues. I find that a two-pronged approach is best.
The first is family facing. Parents, caregivers, and other family members are the most important for identifying sleep issues. Parents who hear scary or unusual breathing during sleep that isn’t present during wakefulness should note this and alert their care team. Parents, especially those who have experience with other children, who note that their child is irritable, cannot stay asleep, or who are not responding to first line sleep interventions should also reach out and ask for professional help.
That being said, babies can be tough. I had to train myself NOT to watch every breath and every movement in my own newborn so as not to overreact! I believe that is where the second prong approach is best, which is to talk with your care team.
The care team, usually headed by a pediatrician, or an outpatient NICU trained specialist (depending on the circumstance), is often a great resource to start with when it comes to a concern for a sleep problem. Your care team should be able to listen and process the information you have gathered and determine whether there seems to be problems they can handle, or if they need to pass that question along to a sleep professional. I think primary care especially receives a lot of questions about sleep, and they are often able to help give advice or give a first line treatment recommendation.
Lastly, if you feel like you’ve tried the interventions, are worried that something else is going on, or just want a second opinion, ask for a sleep medicine referral or, if you are able, make one yourself!
I am a great believer in parental instinct; if a parent believes there is a problem with sleep, they are right more often than not. Further, I believe that if a family is concerned they should always feel comfortable to reach out to their providers and ask! Usually the front line for questions regarding sleep is a primary care physician like a family medicine doctor or a pediatrician. They are usually great at screening for severity of a problem and knowing whether they are equipped to start management or if they should refer to more specialized care. Many patients with HIE may have a number of physicians and medical appointments, It is wonderful to reduce the medical burden for a patient by consolidating the total number of physicians and appointments, but specialty care is always an option.
Regarding who you might see in the sleep world, a department of sleep medicine may include neurologists, pulmonologists and other subspecialists. Regardless of speciality, the team should be equipped to help handle your sleep concerns.
Lastly I will say, don’t wait to ask. Many patients and families suffer for a long time before coming into sleep clinic, and we want to help and be involved as soon as possible.
In my particular clinic, difficulties with initiating or maintaining sleep is one of my most common presenting complaints. My first step in evaluating a new sleep concern is to ask a lot of questions about what a typical day and night look like in an individual patient. There is unfortunately no easy answer, but what I will say is that regardless of the neurologic status of a patient, we all as humans respond positively to a certain set of conditions. A cool, dark, and comfortable sleep environment is obviously very important. I see a number of patients who require night time monitoring with frequent checks, nursing care, vital signs monitoring (with beeping!) and other things which interrupt sleep. I will often work with families and other physicians to minimize these interruptions and maintain a more positive sleep environment.
Next I will talk about consistency. Consistency is king in the sleep world. We will work on maintaining a regular sleep schedule (on weekdays and weekends!) as well as incorporating a positive, appropriately timed bedtime routine. Perhaps just as important is the daytime routine. A regular wake up is the anchor which controls the whole day. On a rough night families may want to let their child sleep in, but this can be counterproductive in some circumstances.
Helping the circadian rhythm know when it should be awake by getting plenty of light, activity, exercise, and regularly timed meals can be just as important as helping the circadian rhythm know when it’s time to sleep! Maintaining daytime wakefulness and avoiding age inappropriate naps is important as well, but can be especially challenging for patients who take medications during the daytime that can be sedating. Working with your physicians to change or reduce sedating medications during the daytime, when appropriate, is another angle to approach daytime sleepiness and encourage sleep at night.
I think a lot of families who have children with neurodevelopmental disability can get frustrated by what they hear regarding “sleep hygiene”. Many families will tell me they have been told “turn off the TV, no electronics in bed” etc, but these either don’t apply to their child or something like an ipad is the only way a family can get their child to stay calm and in bed. Understanding a child as an individual and the dynamics of their situation is paramount. Working to incorporate positive calming situations sometimes take precedence and must be evaluated on a case by case basis.
When I was training in sleep medicine I learned a concept referred to as “survival parenting”. This is a situation where parents struggling with something like sleep have built a situation that is not ideal “but it’s the only thing that ‘works’ ”. Usually what has happened is over time a family has cobbled together a tenuous situation that will usually get their child to sleep. However, they may find that over time it takes more and more steps and parents are getting less and less sleep. Moreover the process of trying to dismantle this situation seems even more daunting.
Common issues are infants/toddlers being rocked to sleep, a parent having to sleep in the bed with their child, the child sleeping in their bed, night time feeds… but there may be a variety of other issues to address. Slowly helping a child (and family!) move towards a more ideal sleep situation can be a difficult but ultimately very helpful process. For instance, helping a child learn to sleep on his/her own can help to increase his/her sleep and parents sleep as well.
There is often a struggle, crying, or even worsening sleep at the beginning and this is often where sleep training fails. Knowing this ahead of time and planning for it is key to helping families maintain a consistent sleep training plan. Just like any other behavioral change, if we are not consistent children cannot learn this important skill! The problem often arises that a parent often needs to “just get some sleep”, so we often find it is harder to be consistent in the middle of the night compared to the daytime. Working with your physician and sometimes a behavioral care team can be important to address issues or roadblocks.
Another common misconception I see is surrounding melatonin. Melatonin is a naturally produced neurohormone which is strongly related to control of the circadian rhythm (about 24 hours). It is classified as a dietary supplement and not regulated in the same way as a medicine. Robust clinical trials have not been performed and dosing and age limits are somewhat uncertain. It can, in the correct circumstance, be an extremely helpful tool in the sleep world, but is not a cure all and should ideally be managed under the care of a knowledgeable physician, especially with escalating doses.
Laughing during sleep only may be referred to, medically, as hypnogely. This is often considered to be a benign or non-harmful condition that is seen in all age groups, but most especially infants. It is most commonly felt to arise from a time or sleep called rapid eye movement or REM, sleep. REM sleep is also sometimes referred to as dream sleep, and these events may represent a dream state. Interestingly, in the term newborn period, REM may make up as much as 50% of sleep. In comparison adults will typically have about 20% REM, so you may see this more commonly.
The question regarding the diagnosis of pseudo bulbar aspect (PBA) is an intriguing one, and likely outside my specific area of expertise. What I will say is that PBA is a neurologic condition, first recognized in adults with certain degenerative neurologic conditions like ALS or Parkinson’s disease. More recent medical reports have looking into the diagnosis of PBA for children, including children with cerebral palsy in the setting of prematurity.
PBA is probably best described as emotions inappropriate to the situation, and in my experience, should be diagnosed based on waking periods. I would exercise extreme caution in diagnosing sleep specific laughing or crying as PBA, and would feel that it is truly unrelated based on my current understanding of the science.
Gelastic seizures can be a complicated diagnosis. These are seizures, which most classically, occur with a either a gelastic (laughing) or daycrastic (crying) event. When they do occur, one important aspect is that events generally should occur during sleep AND wake, should be very stereotyped (meaning they always look/sound very similar) and they should be inappropriate to the situation (often nothing else is going on at the time they occur). Usually when gelastic seizures occur they are very brief, on the order of a few seconds, and would happen numerous times throughout the day and night.
One easy way to differentiate for yourself is to try to intervene during one of these episodes. For instance, if you hear sleep laughing, wake your child during the event, and the event stops, then the event is exceeding unlikely to be a seizure.
When gelastic seizures do occur, they are most commonly a result of a benign tumor of the hypothalamus, called a hypothalamic hamartoma, though in even rarer cases they can arise from other parts of the brain such as the temporal lobe. Notably, gelastic seizures, even in epilepsy, are very rare, and if there is concern, a neurologist with specialization in epilepsy should be a part of the work up and treatment team.
After talking with a knowledgeable physician, diagnosis may begin with electroencephalography (EEG or brain wave test) and/or depending on the circumstance, head imaging like an MRI. There is a lot more that could be said about gelastic seizures, but in general, if the suspicion arises, bring it up to your care team, and remember that most laughing or crying in sleep is not pathologic.
Do you have additional questions about Sleep and HIE? Let us know and we’ll work on additional Q&As with our Medical Advisory Board.
We want to thank Medtronic for sponsoring our Medical Advisory Board educational series, in video and blog format, as a Partner in Hope.
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