Sleep Problems in Children with Down Syndrome

Questions and Answers with George Capone, MD
Director of the Down Syndrome Clinic and Research Center at Kennedy Krieger Institute

What is the link between behavioral problems and sleep?  

The relationship between sleep and behavior is complex and causality runs in both directions. Children with Down syndrome (DS) who have high levels of activity or anxiety may display difficult behavior with bedtime routines. Such children are more likely to have insomnia and problems initiating and/or maintaining consistently restful or restorative sleep. Poor quality sleep can exacerbate existing problems with attention, learning and daytime behavior control. Even in those children without pre-existing behavior concerns, the onset of new medical or health related conditions may result in poor sleep and daytime behavior concerns.

What is the physical cause that makes children with Down syndrome more vulnerable to have sleep disordered breathing?

Several factors contribute to sleep problems in children with DS. Narrowing and collapse of the upper airway resulting in obstructed breathing with respiratory pauses or apnea, during sleep is common. A small oral cavity with a relatively enlarged tongue and low tone of airway muscles are common to most children with DS.  Apnea may become worse due to enlarged tonsils or adenoids, nasal or sinus congestion, poorly controlled asthma or gastroesophogeal reflux.  Having more than a single airway factor with or without overweight increases the severity of OSA. Symptoms of obstructive sleep apnea (OSA) often include snoring, restless sleep, unusual sleep position, excessive mouth breathing, daytime tiredness, or behavioral changes such as irritability, inattention, and poor impulse control.  Even children who have undergone tonsil or adenoid removal may have persistent OSA.

What are the statistics of sleep disturbances and Down syndrome?

There is a 50-100% incidence of OSA in children with DS, with almost 60% of children having an abnormal sleep studies by age 3.5-4 years. The incidence of OSA increases as children grow older. In one study 97% of children with DS between 1-19 years, who snored had OSA. Unfortunately, the ability to predict OSA in children based on parent observation is poor, except in severe cases. A sleep study or polysomnogram (PSG) remains the gold standard test from which to evaluate sleep disorders and OSA. The American Academy of Pediatrics Health Supervision for children with Down Syndrome (2011) now recommends PSG by age 4-5 years for all children with DS

Are there neurological factors that can cause sleep disturbances in Down Syndrome? 

Some children may have an underlying predisposition for limb movements or restless sleep with frequent arousals and awakenings resulting in fragmentation of sleep even in the absence of OSA.  These phenomena likely reflect problems with neurochemical signaling during the orchestration of sleep-phase cycling throughout the night and often results in a lack of restorative sleep.

How can sleep apnea be improved in children with Down syndrome?

Recognizing the need for consistently good sleep is an important and practical goal

Addressing underlying medical and health-related concerns is paramount

1. Medical factors to address with your pediatrician and/or ENT when OSA is suspected

The presence of risk factors in their typical order of appearance (younger to older child)

  • Tracheal narrowing or collapse –in some infants or toddlers
  • Narrow inlet to upper airway – can the airway be visualized easily?
  • Small, narrow, crowded oral-cavity  or relatively enlarged tongue
  • Enlarged tonsils & adenoid tissue – or regrowth after prior removal
  • Decreased airway muscle tone – especially during REM sleep (2-6am when no one is watching)
  • Congested nasal passages & sinuses
  • Poorly controlled allergies, gastroesophogeal reflux or asthma symptoms
  • Lingual tonsil – at the base of the tongue (older children) – requires ENT examination to visualize
  • Overweight – increases the work of breathing

2. What to discuss with your pediatrician and/or ENT physician when OSA is present

Treatment options according to severity & location of OSA symptoms

  • Nasal rinses & decongestants, antihistamines or steroid spray in the evening
  • Sleep positioning – sleep on side or propped up – not lying flat on back which often makes OSA worse (good luck!)
  • Tonsil & adenoid removal (surgical procedure)
  • More extensive reconstruction of the upper airway, uvula, soft palate or tongue (surgical procedure)
  • Positive Airway Pressure (PAP) during sleep – some older children can be trained to wear a PAP mask during sleep (good luck!)

How can sleep hygiene be improved in children with Down syndrome even when OSA is not present?

Working to promote consistently good sleep (sleep hygiene) is an important and practical goal

1. Tips to promote better sleep

  • Consistent bedtime routine: bath time, story time and lights-out
  • Consistent wake-up time
  • Afternoon physical activity helps to make kids tired in the evening
  • Limit evening computer, TV and game time
  • No TV, computer, iPods or iPads in the bedroom
  • A night light or white-noise machine may help the child to relax
  • Avoid afternoon naps
  • Avoid caffeine containing drinks and late meals

2. Medical, health & wellness considerations

  • Avoid too much heat or dryness in the bedroom at night – better to be humid & cool
  • Treat allergies and respiratory infections aggressively – nasal saline rinse, steroid spray, humidity, anti-histamines, in the evening
  • Treat symptoms of asthma, gastroesophogeal reflux in the evening
  • Consider checking body iron stores (Ferritin level) sometimes associated with limb jerks and restless sleep. This is not the same entity as iron deficiency anemia

3. When considering medication and non-medication sleep aides

  • Melatonin may help with sleep initiation (a naturally produced neurohormone)
  • Benadryl may help with sleep onset & maintenance through the night (an antihistamine)
  • If other medications are already being used to treat other conditions
    • Try to use sedating medications at bedtime when feasible
    • Some breathing treatments for airway disease are necessary at bedtime but may cause problems with initiating sleep
    • Avoid stimulant medications (for ADHD) in the late afternoon or evening
    • Non-stimulant medication for managing symptoms of ADHD should be considered





One Response

  1. Sandra Chapp Sep 20, 2013 - Reply

    This is very true. /As a dental hygienist, who specialized in children with syndromes and/or special issues, a ds child was likely to have numerous physical problems that caused the child to be anxious and/or afraid of dental care and, of course, the increased anxiety caused a circular problem making dental care even more difficult and uncomfortable for a ds child. This is the reason a specialist, a pedodontist, who specializes in children with syndromes, fears, anxiety, or has special physical impairments should always be the dentist, who takes care of a ds child. Education and information and a policy which understands the issues aids in making the visit pleasant and the receipt of improved dental care.
    A ds child is very likely to have a narrow airway, sinus and/or congestion issues – causing drainage and requiring mouth breathing, an enlarged tongue in comparison to the child’s mouth, not understand what is happening which increases the anxiety as the child is not in his/her comfort zone, needs usually to be away from his/her parents and in a nurturing environment. If the child is afraid of the dental chair, then have the child sit on a regular chair, be prepared to have a floor dental picnic (making the area as sterile and as comfy as possible), explain what is going to happen before entering the mouth, and allow the child to hold a spare mirror or toy that resembles the equipment so the child feels a part of the process and/or thinks it is a new game. Perhaps, do not start with x-rays because it is difficult to breathe, stay still, and not be afraid at the beginning of the appointment. Many adults have problems when they have to take an x-ray due to a small mouth or restricted airway or thick saliva. Therefore, a ds child should be playfully examined by the dental hygienist so the dental hygienist enters the mouth being cognizant of the physical and emotional issues. Knowledge is power. Play a game by taking the child’s mind off of the dental equipment after it is explained – for instance, have the child raise his/her foot and try to reach the foot or see it with the mirror or toy that the child is playing with at that time. Play games by using silly names, talk with a low voice, keep a smile on your face, no matter what happens – make it appear to be ok or normal and make it into a joke so the child does not become embarrassed or anxious. Move slowly, do the best you can, trust is key. After building trust all of the facial muscles become more mobile and the noise not scary – especially, if the child played with a toy which made the same noise by cleaning a doll or piano. Make up songs, connect the dots on your body to make pictures, while the child is connecting dots on a doll or toy animal or paper placed on his/her arm – the child will be distracted and having fun and the dental hygienist can use those times to get as much done as possible.
    Remember, the dental care may not be absolutely perfect after the first visit. The point of the first visit is to provide the dental provider with knowledge regarding the patient, become friends with the patient, build trust, have the child enjoy the visit, be aware of any obstacles which you will need to face to provide care and develop a strategy by learning the personality of the patient. Most ds patients usually love to come back and see you, if trust and friendship are established in the beginning. Parents should also be informed by consultation, pamphlets, other literature, and by being introduced into the care system. Dental providers should always be aware of all aspects of the patient not just the teeth and be aware of the physical history, the need for any special medication, allergies, fears, and determine if other specialist may be required. In some cases, for extensive work, depending on the physical nature and the patient, care may need to be performed at the hospital for extensive procedures. However, a ds patient when presented with the appropriate, nurturing, informed, and prepared dental hygienist and dentist. I have always found ds patients to be appreciative and very happy to come in and visit with me while dental care is being performed. Without anxiety, a ds patient, depending on his/her special issues, are usually a joy to have as your patient. Trust, knowledge, going slow, being willing to adapt to the patient’s needs or concerns, speak slowly and in a low voice, play games, make up silly names or songs, develop toys that teach and distract the child in order to calm the child, building trust and friendship, providing a nurturing and informed environment for patient and parents, and making sure that you have a good physical history from the parents, and your own assessments of probable issues shall make the dental visit good. Remember, a perfect dental cleaning, x-rays, and fluoride are not the first goal. Be empathetic, understand that a narrow airway, tongue control, thick saliva, congestion, not being able to breathe, being out of a comfort zone shall make anybody anxious and not cooperative. This child is the same as any other patients – you just have advanced warning that you need to be adaptable and find creative methods to calm the parents and the patient so that you can obtain a complete medical history, perform a dental assessment, an assessment of what methods shall assist you inform the patient of the process, establish trust, learn dental homecare, allows you while having fun to perform dental work being cognizant of the entire body and any issues which should be addressed prior to beginning dental care and during the care. Be creative and have fun because you are serving parents and patient who are often very anxious in any medical/dental office because they want people who, not only provide good dental care, but also care about the patient not just a tooth and understands all that the parents and the child may have experienced which is negative. So introduce all patients who walk into the office, to a positive nurturing environment by using good listening and communication skills. Be creative – this applies to all patients.

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