In Macbeth, Shakespeare defined sleep as the “balm of hurt minds… chief nourisher in life’s feast.” The World Health Organization has defined the developed world’s severe sleep deficiency as a public health epidemic. Parents with special needs children know about this more than most: we are almost all in need of that elusive good night’s rest.
To help our members understand more, SNNHK invited two experts in children’s sleep issues, Professor Albert Li and Dr Alice Siu from the Chinese University of Hong Kong, to share their views during an online webinar on 15 February 2023.
Common sleep problems in children with special needs
Professor Albert Li delivered a very useful presentation introducing common sleep problems in children with special needs, particularly those with autism spectrum disorder (ASD). He described some of the best strategies for dealing with sleep issues, and what parents should know about childhood sleep apnoea.
Professor Li noted that sleep problems are reported in up to 80% of children with ASD and sleep is often the first concern reported by parents in children who are later diagnosed with ASD. These issues can range from sleep latency to awakening in the middle of the night, to early morning rises, nightmares and night terrors, sleepwalking and bedwetting. Poor sleep is associated with higher incidents of aggression, self-injury, hyperactivity, and inattention. For parents, this increases stress because their sleep is also affected.
Professor Li explained the important role of melatonin as a hormone which is critical for maintaining our circadian rhythms and sleep patterns. Blue light from screens can negatively affect the production of melatonin and is probably one of the biggest culprits of disturbed sleep.
How to help? It’s not a “one size fits all” approach, but some strategies have been proven to work. Most important is a regular bedtime routine and rituals: keep the bedroom cool, dark and quiet, establish a ritual such as brushing teeth followed by story time, keep the child calm and quiet, avoid stimulants before bed, particularly – as mentioned earlier – blue light from screens! Also important in the daily routine is exercise – your child should be more physically ready for rest if they have exercised during the day. However, exercise should be completed no later than 3-4 hours before bedtime as it can also be a stimulant.
Parents and caregivers should consult a paediatrician about melatonin, if an additional sleep aid is needed. Melatonin taken as a supplement has been extensively researched and has been proven to be safe, with no effect on growth or puberty. Another practical sleep aid may be a weighted blanket, which can often be a good solution for children with special needs. Whatever method a parent chooses, persistency and consistency are the keys to establishing good sleep patterns for your child.
Professor Li also gave a brief introduction to sleep apnoea, which is common in special needs children and can lead to further health complications. Sleep studies may be necessary to diagnose sleep apnoea, however, these can be relatively stressful for all involved, as they require several appointments and a hospital or clinic stay (usually overnight). The study itself involves attaching monitor leads and wires, which can cause anxiety in children with special needs, so familiarising the child in advance of the appointment is recommended.
Obstructive sleep apnoea
To explain more about this problem, Dr Alice Siu delivered a detailed presentation on obstructive sleep apnoea (OSA) and various treatment methods including surgery.
Dr Siu explained that children who have OSA might have enlarged tonsils and/or adenoids, and in these cases a tonsillectomy and/or adenoidectomy can resolve snoring, sleep apnoea and associated symptoms. This is a relatively simple surgery, although some complications might occur if the child is overweight or older.
Nasal surgery is another option that might be indicated. Nasal obstruction can be caused by allergies, polyps, a deviated septum, enlarged adenoids, an enlarged inferior turbinate (turbinates are finger-like structures in your nose that heat and moisten the air you breathe), nasal valve collapse, or a high-arch hard palate (the roof of your mouth) with a narrow bottom to your nasal passageway. First-line medical treatment starts with nasal spray and allergy management. Structural problems can benefit from surgical treatment, and one simple option called radiofrequency turbinate reduction (RFTR) can be performed under local anaesthesia.
Another surgery option involves identifying and fixing a condition known as “tongue tie”, as improper tongue posture can cause blocked airways, and a recessed jaw and chin which exacerbates sleep apnoea. Surgeons are also exploring rapid maxillary expansion, or making noses wider.
To find the right solution, it is important to consult with an ENT surgeon who has sleep surgery experience. Sleep apnoea surgery, while daunting, could significantly improve a child’s health and quality of life.
Key questions
The presentations were followed by a lively Q&A session. Our members had a lot of questions about specific sleep issues, including co-sleeping – “don’t even start it!” advised Professor Li. If you do, get the child into his or her own bed as early as possible. Co-sleeping has been associated with Sudden Infant Death Syndrome (SIDS) in younger babies and children, and becomes problematic in older children when it becomes a habit.
Parents are also dealing with sleepwalking, nightmares and night terrors, as well as bedwetting and toilet training. The child may not remember sleepwalking and night terrors but usually remembers nightmares. Establishing sleep rituals and routines can help to mitigate these. Bedwetting or nocturnal enuresis can be “primary”, where the child has never been dry for more than six months, or “secondary”, where the child has been dry for more than six months but then reverts to bedwetting, which could be caused by external stress, a urinary tract infection, or other temporary causes that need to be examined. Primary bedwetting is more common in special needs children and can be mitigated by avoiding fluids for a few hours before bedtime, ensuring the child uses the bathroom before bed. One potential method which works in around 60% of cases is an “enuresis alarm” which is activated by moisture, but it unfortunately tends to also wake up the entire household!
We ran out of time before answering more questions, but Professor Li and Dr Siu both kindly offered to answer questions from interested parents. Please reach out to SNNHK at connect@snnhk.org with your question and we can share your question and put you in touch with our speakers directly.
Now, here’s to a good night’s sleep!
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