Updated: May 26
Oh, sleep! Something that we all need but many of us never seem to get enough of, especially special needs parents. It is estimated that the parents of a new baby lose up to an average of six months' worth of sleep within the first 24 months of the child’s life .
If that sounds tiring to you, parents of special needs kids often experience this extended period of sleep loss for far longer than 24 months. For example, one study that surveyed parents of children with special needs reported that parents of special needs kids took a longer time falling asleep, had shorter sleep duration, and had poorer sleep quality than typically developing children .
Another study that followed parents of children who had been hospitalized reported that these parents felt like they were “walking in a fog” .
Any special needs parent knows that sleep is a precious gift to be taken when possible but what about special needs kids?
If special needs parents are suffering from poor quality sleep, then what about their children with Down syndrome who may be arguably getting less sleep?
Enter sleep apnea.
Sleep Apnea in Down Syndrome
Sleep apnea, a condition that affects breathing during sleep, making it extremely hard to have high-quality sleep, is unfortunately common in people with Down syndrome. It is estimated that between 55%-97% of people with Down syndrome have sleep apnea whereas the typical pediatric or child population of sleep apnea is only between 1-4% .
Sleep apnea can be in one of two forms, obstructive and central. Obstructive sleep apnea occurs when lymphoid tissue like the tonsils or the adenoids become enlarged and block the airways making it harder to breathe. Central sleep apnea is more serious in that it involves the brain itself not telling the muscles to breathe during sleep and it usually involves serious illness.
Obstructive sleep apnea (OSA) is the most common form of sleep apnea in people with Down syndrome.
Why do people with Down syndrome have such a high occurrence of OSA compared to the typical population? The answers range from low muscle tone and poor coordination of airways movements to narrowed air passages, an enlarged tongue, and tonsillar and adenoid hypertrophy .
An increased incidence of obesity in people with Down syndrome is also a contributing factor.
But is that the end of the story?
Should you resign your child with Down syndrome to a fate of unending OSA, CPAP machines, and/or surgical removal of the tonsils and adenoids as the only options for a parent of a child with Down syndrome and sleep apnea?
While CPAP (continuous positive airway pressure) machines can be a godsend for those who need them they are sometimes not well tolerated by individuals with special needs. Is there any other approach to OSA that can reduce the need for them and potentially reduce or even eliminate OSA in people with Down syndrome?
To get to the root cause of OSA in people with Down syndrome, you have to understand why it’s there in the first place.
Let’s consider the above reasons given for OSA in Down syndrome, specifically low muscle tone, narrow airways passages, and enlarged tonsils and adenoids.
Low Muscle Tone
Low muscle tone seems to go hand in hand with people with Down syndrome. In fact, it is estimated that the vast majority, if not all people with Down syndrome, suffer from some sense of lowered muscle tone compared to a typical individual.
The reasons for this are complex and numerous. For example, ligamental laxity (“loose ligaments”) is often seen in Down syndrome. Also, there is a suggestion that people with Down syndrome are better able to relax their muscles over a longer period of time as compared to typical individuals which contribute to the overall picture of low muscle tone .
There is also research suggesting that low thyroid status or hypothyroidism contributes to low muscle tone in Down syndrome. Research shows that children with Down syndrome and subclinical hypothyroidism (high TSH and normal T4 labs) were more likely to have low muscle tone and anemia than children who didn’t have subclinical hypothyroidism .
People with DS also have mitochondrial dysfunction that could contribute to low muscle tone. Mitochondria are the powerhouse of the cell. These organelles make the energy that the body needs to function and thrive. With fewer mitochondria with a lowered function and less energy production, people with Down syndrome could be suffering from a lack of energy production that contributes to their lowered muscle tone.
There may even be neurological causes of low muscle tone that haven’t yet been thoroughly discovered through research. For example, people with Down syndrome exhibit increased brain nerve cell death due to the increased activity of certain genes on chromosome 21. This could lead to an increase in brain dysfunction affecting nerve cells' ability to control muscle function.
There is no doubt that people with Down syndrome have smaller than average airway passages. Tiny noses and mouths are adorable in infants but contribute greatly to the overall difficulty of getting much-needed air into the respiratory system.
The narrowed airways also further contribute to respiratory difficulty in that they can become inflamed and congested more easily allowing pathogens easy access inside but not so much when leaving.
Also, narrow airways are more difficult to clear and an infant or a young child with Down syndrome exhibiting moderate to severe developmental delay may not be able to clear her own airways or may be unwilling to let a parent clear them for him.
Enlarged Tonsils and Adenoids
Enlarged tonsils and adenoids are by far the most common cause of OSA in children with Down syndrome. The tonsils and adenoids are patches of immune tissue that are part of the lymphatic system. The lymphatic system has the task of clearing away infections in the body. Therefore the job of the tonsils and adenoids is to act as a net, catching germs that enter through the nose and mouth and preventing them from getting into the respiratory tract.
But why do people with Down syndrome often have enlarged tonsils and adenoids? Is this because they encounter pathogens more often? Or maybe because of an imbalanced immune system?
While people with Down syndrome do often have immune dysfunction, one of the biggest reasons people with Down syndrome have hypertrophy of the adenoids and tonsils is because of food intolerances.
Food Intolerances and Sleep Apnea in Down Syndrome
What? Food? That can’t be right, can it?
Yes! In fact, food intolerances, especially egg and dairy, have been linked to enlarged tonsils and adenoids, even when there are no signs or symptoms of overt food allergy. Studies show that children with both positive and negative serum IgE were found to have local IgE detection in the tonsils and adenoids .
What does that mean?
IgE is an antibody that is produced due to food allergies. It helps to produce the redness, itchiness, and swelling of the body that many people think of when they think of an allergic reaction. Food allergies are usually associated with serum IgE, IgE that shows up in the bloodstream.
Local IgE, like that found in the enlarged tonsils and adenoids, is confined to the tissue in which it was found.
This means that a large majority of individuals with enlarged adenoids and tonsils in the study (over 40%), had no IgE in their bloodstream (i.e. no signs of a food allergy) but IgE in their tonsils and adenoids. If these individuals went to an allergist and had blood work done, they would be told that they didn’t have any food sensitivities although their tonsils would say different.
So does this mean that all kids with DS with enlarged adenoids have food allergies?
Certainly not! But it can’t be dismissed based on an allergist's blood work.
For example, people with DS are more likely to have an immune response to food antigens compared to the typical population. Higher amounts of IgA, the antibody that plays a critical role in the immune function of mucus membranes, was found in people with DS although a biopsy of the intestinal lining revealed no gut anomalies .
Furthermore, people with DS are more likely to have increased allergies to cow’s milk protein with symptoms like failure to thrive .
So how can this information help your child with Down syndrome improve her sleep apnea?
Removing food allergens like dairy and egg can help to reduce the inflammation in tonsils and adenoids and therefore improve OSA. Since food sensitivities might not be found in conventional blood work, it’s best to talk to your naturopathic doctor about a comprehensive food sensitivity panel.
Also making sure that your child with DS has a complete thyroid panel done at least once a year is crucial for good health. There is more to a thyroid panel than TSH with reflex to T4. Some other thyroid parameters to check would be thyroglobulin and anti-thyroperoxidase antibodies (anti-TPO) to check for autoimmune thyroiditis (Hashimoto’s thyroiditis) since this type of thyroid dysfunction is common in people with DS.
Clearing out your child’s airways may be a chore but using a netipot filled with diluted hydrogen peroxide (one part 3% hydrogen peroxide with 4 parts water) can help keep airways clear and give a light disinfecting boost to prevent upper respiratory tract infections.
Keeping your child’s airways clear will also help optimize airflow to prevent OSA. Another helpful tip is to keep your child’s narrow airways moist though optimal moisture in the room where he or she sleeps. This may mean buying a humidifier or using steam inhalation in a bathroom where a hot shower is running to moisten dried airways.
Your naturopathic doctor will be a great resource in helping get to the bottom of your child’s sleep apnea.
While OSA is common in children with Down syndrome, there can be great benefits in removing food intolerances and environmental changes that can help your child with Down syndrome thrive!
Are you dealing with OSA in your child with Down syndrome?
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