{"id":6316,"date":"2022-04-21T13:49:04","date_gmt":"2022-04-21T12:49:04","guid":{"rendered":"https:\/\/www.sense.org.uk\/?page_id=6316"},"modified":"2026-04-22T11:52:10","modified_gmt":"2026-04-22T10:52:10","slug":"charge-syndrome-sleeping-difficulties","status":"publish","type":"page","link":"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/charge-syndrome\/charge-syndrome-sleeping-difficulties\/","title":{"rendered":"CHARGE syndrome: sleeping difficulties"},"content":{"rendered":"\n<p class=\"is-style-intro\">This page is about sleeping difficulties experienced by many children with CHARGE syndrome.<\/p>\n\n\n\n<p>It describes how various features of CHARGE syndrome, related behaviours and frequent early hospitalisation can cause sleeping difficulties.<\/p>\n\n\n\n<p>It also covers ways of managing sleeping difficulties and has links to more detailed information on some topics included here.<\/p>\n\n\n\n<p>On this page:<\/p>\n\n\n\n<ul class=\"wp-block-list is-style-primary-bullets\">\n<li><a href=\"#how\">How many children with CHARGE syndrome have difficulty sleeping?<\/a><\/li>\n\n\n\n<li><a href=\"#why\">Why do children with CHARGE syndrome have difficulty sleeping?<\/a><\/li>\n\n\n\n<li><a href=\"#causes\">The causes of sleep difficulties in children with CHARGE syndrome<\/a><\/li>\n\n\n\n<li><a href=\"#managing\">Managing sleep difficulties<\/a><\/li>\n<\/ul>\n\n\n\n  <div class=\"wp-block  box    is-style-textured-primary-tint-10  align-right  size-medium\">    <div class=\"acf-innerblocks-container\">\n\n<h2 class=\"wp-block-heading\"><strong>Sense is here for everyone with CHARGE syndrome<\/strong><\/h2>\n\n\n\n<p class=\"is-style-default\"><a href=\"https:\/\/www.sense.org.uk\/our-services\/support-in-your-area\/\">We offer support all over the UK<\/a>. Whether you need some expert advice, a place to socialise, or help with communicating or getting around, we offer something for everyone. Because no one should be left out of life.<\/p>\n\n\n\n<p class=\"is-style-default\">To find out what kind of support we could give you or your loved one, speak to one of our friendly team.<\/p>\n\n\n\n<div class=\"wp-block-buttons is-layout-flex wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button is-style-secondary\"><a class=\"wp-block-button__link wp-element-button\" href=\"https:\/\/www.sense.org.uk\/information-and-advice\/information-and-advice-service\/\">Contact us<\/a><\/div>\n<\/div>\n\n<\/div>\n  <\/div>\n\n\n\n\n<h2 class=\"wp-block-heading\" id=\"how\"><strong>How many children with CHARGE syndrome have difficulty sleeping?<\/strong><\/h2>\n\n\n\n<p>Reports from parents suggest that more than half of all children with CHARGE syndrome may have difficulty sleeping.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"why\"><strong>Why do children with CHARGE syndrome have difficulty sleeping?<\/strong><\/h2>\n\n\n\n<p>Many children with CHARGE syndrome have difficulty self-soothing, getting to sleep and staying asleep because of:<\/p>\n\n\n\n<ul class=\"wp-block-list is-style-primary-bullets\">\n<li>Many of the physical features of the condition and how these affect their breathing and senses.<\/li>\n\n\n\n<li>Frequent hospitalisation early in life.<\/li>\n\n\n\n<li>High levels of anxiety.<\/li>\n\n\n\n<li>Difficulty self-settling at night for sleep.<\/li>\n<\/ul>\n\n\n\n<p><a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/charge-syndrome\/what-is-charge-syndrome\/\">Learn more about the main characteristics of CHARGE syndrome.<\/a> <\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"causes\"><strong>The causes of sleep difficulties in children with CHARGE syndrome<\/strong><\/h2>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"Visual\"><strong>Visual impairment<\/strong><\/h3>\n\n\n\n<p>Children with a significant <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/blindness-and-visual-impairment\/\">visual impairment<\/a> often have difficulty sleeping.<\/p>\n\n\n\n<p>In response to low light, our brains naturally produce a hormone called melatonin, which helps control our sleep patterns.<\/p>\n\n\n\n<p>Visual impairment can stop the production of melatonin. This disrupts our circadian rhythm \u2013&nbsp;our 24-hor biological clock \u2013 in turn disrupting sleep cycles.<\/p>\n\n\n\n<p><a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/charge-syndrome\/coloboma-treatments-management\/\">Read more about visual impairment in children with CHARGE syndrome.<\/a><\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Hearing impairment<\/h3>\n\n\n\n<p>Children with a significant <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/deafness-and-hearing-loss\/\">hearing impairment<\/a> may also have difficulty sleeping. <\/p>\n\n\n\n<p>They might struggle with feeling safe and secure enough to sleep when lights are turned off, as this affects their environmental awareness.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"Choanal\"><strong>Choanal atresia and cleft palate<\/strong><\/h3>\n\n\n\n<p>Children with CHARGE also experience sleep difficulties due to:<\/p>\n\n\n\n<ul class=\"wp-block-list is-style-secondary-bullets\">\n<li>Choanal atresia (atresia choanae) \u2013 nasal passages blocked by bone or tissue.<\/li>\n\n\n\n<li>Cleft palate \u2013 a gap or split in the roof of the mouth.<\/li>\n<\/ul>\n\n\n\n<p>These can both cause obstructive sleep apnoea \u2013 breathing stops and starts while sleeping, causing disrupted sleep. <\/p>\n\n\n\n<p>Known effects of obstructive sleep apnoea include:<\/p>\n\n\n\n<ul class=\"wp-block-list is-style-primary-bullets\">\n<li>Poor concentration.<\/li>\n\n\n\n<li>Daytime behaviour.<\/li>\n\n\n\n<li>Hyperactivity (being unusually or abnormally active).<\/li>\n\n\n\n<li>Changes in mood.<\/li>\n\n\n\n<li>Impulsive behaviour (unable to control behaviour).&nbsp;<\/li>\n\n\n\n<li>Other problems that affect understanding through learning, our senses and experience.<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"Otitis\"><strong>Otitis media<\/strong><\/h3>\n\n\n\n<p>Otitis media means middle ear infection. Recurring middle ear infection has been linked to poor sleep.&nbsp;<\/p>\n\n\n\n<p>It is not clear whether middle ear infections cause a lack of sleep because of pain or an effect on the upper airway.<\/p>\n\n\n\n<p><a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/charge-syndrome\/charge-ear-hearing-loss-treatments\/\">Read more about ear problems in CHARGE syndrome.<\/a><\/p>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"Gastro\"><strong>Gastro-oesophageal reflux<\/strong><\/h3>\n\n\n\n<p>Gastro-oesophageal reflux is when acid from the stomach leaks up into the oesophagus (gullet).<\/p>\n\n\n\n<p>The pain from gastro-oesophageal reflux can cause disrupted sleep.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"Behavioural\"><strong>Behavioural&nbsp;<\/strong><\/h3>\n\n\n\n<p>It is difficult to know for sure how much behavioural problems cause sleep difficulties, and how much sleep difficulties cause behavioural problems.<\/p>\n\n\n\n<p>What is clear is that in children with CHARGE syndrome, there is a link between poor sleep and:<\/p>\n\n\n\n<ul class=\"wp-block-list is-style-primary-bullets\">\n<li>Self-absorbed behaviour.<\/li>\n\n\n\n<li>Anxiety, which may be linked to frequent early hospitalisations.&nbsp;<\/li>\n\n\n\n<li>Poor social skills.<\/li>\n<\/ul>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"managing\"><strong>Managing sleep difficulties<\/strong><\/h2>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"Treating\"><strong>Treating obstructions<\/strong><\/h3>\n\n\n\n<p>If your child has any obstructions that cause sleep difficulties, they should be treated.&nbsp;<\/p>\n\n\n\n<p>In early childhood, this may include treatment for choanal atresia (blocked nasal passages).&nbsp;<\/p>\n\n\n\n<p>Also, your child should be examined for any symptoms of obstructions in their early years, as this is when children are prone to enlarged tonsils and adenoids.&nbsp;<\/p>\n\n\n\n  <div class=\"wp-block  box    is-style-textured-secondary-tint-10\">    <div class=\"acf-innerblocks-container\">\n\n<ul id=\"block-3e7de336-fe18-4c3f-bc21-1195622117b4\" class=\"wp-block-list is-style-secondary-bullets\">\n<li>Avoid bright light at night, as this can disrupt the 24-hour biological clock and natural sleep cycle.<\/li>\n\n\n\n<li>A bedtime routine, involving familiar comfort objects, and a set bedtime can help your child to understand what to expect and how they should behave.&nbsp;<\/li>\n\n\n\n<li>A routine can start 30 minutes to two hours before bedtime and can include wind-down activities, such as a warm bath or shower or a bedtime story.<\/li>\n\n\n\n<li>Sticking to a set pattern each night helps your child to settle before bed and gives them time to calm down before sleeping.&nbsp;<\/li>\n\n\n\n<li>Make going to the toilet the last task before bed so your child doesn\u2019t have to get up in the night.<\/li>\n<\/ul>\n\n<\/div>\n  <\/div>\n\n\n\n\n<h3 class=\"wp-block-heading\" id=\"Melatonin\"><strong>Melatonin treatment<\/strong><\/h3>\n\n\n\n<p>If your child\u2019s 24-hour biological clock is greatly disrupted, they may benefit from melatonin treatment. Speak to your GP or CHARGE clinic about this.&nbsp;<\/p>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"Self-settling\"><strong>Self-settling<\/strong><\/h3>\n\n\n\n<p>What helps children self-settle can vary greatly in children with CHARGE syndrome.<\/p>\n\n\n\n<p>Try exploring what works for your child and use what you find as part of their settling routine at night.&nbsp;<\/p>\n\n\n\n<p>This may involve:<\/p>\n\n\n\n<ul class=\"wp-block-list is-style-primary-bullets\">\n<li>Heavy covers.<\/li>\n\n\n\n<li>The right room temperature.<\/li>\n\n\n\n<li>Cuddly or vibratory toys.<\/li>\n\n\n\n<li>Night lights.<\/li>\n\n\n\n<li>A baby monitor.<\/li>\n<\/ul>\n\n\n\n<p>If your child leaves their bed and seeks you out at night, try not to get into conversation with them. Instead, lead them quietly and immediately back to bed.&nbsp;<\/p>\n\n\n\n<p>You might have to do this several times a night, but it is important that your child learns that they\u2019ll get the same response each time.&nbsp;<\/p>\n\n\n\n  <div class=\"wp-block  box    is-style-textured-primary-tint-10\">    <div class=\"acf-innerblocks-container\">\n\n<p>Try praising your child in the morning for staying in bed at night, as that helps them to see it as good behaviour that gets rewarded.<\/p>\n\n\n\n<p>You can even use a reward chart or stickers, with a small prize when they\u2019ve earned a certain number of stickers.<\/p>\n\n<\/div>\n  <\/div>\n\n\n\n<div class=\"wp-block-hs-snippet \">\n\n\t\n  <div class=\"wp-block  box  ctaBox    is-style-textured-secondary-tint-10\">\n    <div class=\"ctaBox__row\">\n      <div class=\"ctaBox__content\">\n        <div class=\"acf-innerblocks-container\">\n\n<h2 class=\"wp-block-heading\">Support from Sense<\/h2>\n\n\n\n<p>We&#8217;re here for disabled people with complex needs and their families all over the UK. Get in touch to find out more about the services we offer.<\/p>\n\n<\/div>\n      <\/div>\n\n      <div class=\"ctaBox__cta\">\n        <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/information-and-advice-service\/\" class=\"button  button--primary\">Find out more<\/a>\n      <\/div>\n    <\/div>\n\n  <\/div>\n\n\n\n\t<\/div>\n\n\n<p>This content was last reviewed in July 2023. 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