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