We are continuing our series of posts on the results of our joint 2020 survey on Down’s syndrome and Covid-19 with a post detailing the information concerning 2-18 year olds. (Part 1 here)  Despite the low rates of cases of Covid-19 reported (due to lack of testing outside of hospitals) we have collected extremely valuable information on the health of people with DS in the UK.  As we breakdown the rates of other conditions within these groups and rates of medications, note how common some things are with each age range. For example 24% 2-6 year olds reported sleep apnea but only 4% are on treatment- why the gap? Is it due to surgical treatments which are often partially or ineffective long term? What are the medical ramifications for those not receiving adequate oxygen to their body and brain every night?  We have been supporting Prof Cathy Hill and her team at Southampton to look into sleep apnea and DS deeper, but without sufficient research donations there is only so much that can be funded.  If there are no donations and therefore no grants this sends a message to researchers that is not an area of interest to parents or the medical community.

 

Another trend we want to draw your attention to is the way under-treatment of things such as hypothyroidism (low activity in the thyroid gland) can result in or worsen conditions like constipation or lower muscle tone (causing trouble swallowing).  Missing one thing can become a perfect storm to ‘collect’ other problems which are themselves labelled ‘normal for Down’s syndrome’ (this is called Diagnostic Overshadowing).  Before you know it a child can end up on multiple medications when it all originates with something like a low thyroid that was not aggressively treated or coeliac disease/non-coeliac gluten sensitivity that was missed or brushed off.

 

Conversely, I believe we are also witnessing a shift in some medical professionals, particularly paediatricians,  treating some children much more proactively than ever before. For example supplemental or total tube feeding during early years to avoid aspiration issues (aspiration pneumonia and associated lung scarring) or having a low threshold for starting on anti-constipation or anti-reflux medication.  The pros and cons of this will be discussed in a later post.

 

Young Child: 2-6 Year Olds

279 children in this age range are represented.   We can begin by understanding the levels of background health of this age group by looking at their background illness and prescribed medicines.

Their rates of prescribed medication are as follows:

30% on no medication

29% on medication for constipation

21% on long term antibiotics

15% on reflux medication

16% on inhalers

13% on thyroid medication

11% on thickener for liquids (to avoid aspiration)

4% on CPAP/BPAP/APAP treatment for sleep apnea

 

Conditions apart from their Down’s syndrome: 70% of 2-6 year old children have ‘another’ condition aside from their DS.  20% had 3 or more other conditions adding to their medical ‘complexity’ when unwell.  This can mean managing their other conditions may make it harder to treat them when unwell. For example tube fed and needing antibiotics or risk of aspiration (breathing in food or liquid rather than swallowing it) and coughing from chest infection.

Please note that for some of those on treatment their parents did not report the condition. It was likely assumed because they take medication they don’t have the condition any longer and here hence lower rates:

 

26% have no other conditions

27% have a repaired heart condition causing no current issues

24% have sleep apnea

17% have ongoing issues with their heart

16% have thyroid issues

15% have lung damage

11% have a bowel issue

11% have acid reflux

8% are tube fed

8% are constipated

7% have asthma

5% have autism

 

Supplements

50% take a multivitamin

38% take nothing

15% take a probiotic

10% take Vitamin D

9% take Vitamin C

7% take fish oil

2% take TNI (Targeted Nutritional Intervention)

The Department of Health recommends children aged 1 to 4 years old should be given a daily supplement containing 10µg of vitamin D. Vitamin supplements containing vitamins A and C are recommended for babies and children aged 6 months to 5 years old. That is unless they’re getting more than 500ml (about a pint) of infant formula a day.  There is some evidence that the requirements for these vitamins maybe higher but, as a bare minimum, parents should follow these guidelines; they are only moderate and will cause no harm

“children aged 1 to 4 years old should be given a daily supplement containing 10µg of vitamin D. 

Vitamins A and C are recommended for babies and children aged 6 months to 5 years old”

 

From this age range 60% had not been ill in the first 1/3 of the year.  Of those that became unwell just under half did not need to seek help for their child’s illness episode.  Eleven 2-6 year olds were admitted to hospital (4%), most going to a normal ward and one to ITU.  None were found to have Covid-19 and most had chest infections.

Child: 7-12 Year Olds

226 children were represented in this age range.

Their rates of prescribed medication are as follows:

33% on no medication

25% on medication for constipation

9% on long term antibiotics

5% on reflux medication

16% on inhalers

20% on thyroid medication

5% on thickener for liquids (to avoid aspiration)

3% on CPAP/BPAP/APAP treatment for sleep apnea

10% on melatonin

 

Conditions apart from their Down’s syndrome: 77% of 7-12 year old children have ‘another’ condition aside from their DS.  26% had 3 or more other conditions.

Please note that for some of those on treatment their parents did not report the condition. It was likely assumed because they take medication they don’t have the condition any longer and here hence lower rates:

 

22% have no other conditions

32% have a repaired heart condition causing no current issues

23% have sleep apnea

9% have ongoing issues with their heart

23% have thyroid issues

10% have lung damage

9% have a bowel issue

4% are tube fed

8% have Coeliac disease

12% have asthma

15% have autism

6% have ADHD

6% have obesity

 

Supplements

55% are on on no supplements

31% take a Multivitamin

9% take Vitamin D

6% take Probiotics

5% take Fish oil/Omega 3

4% take Vitamin C

3% take TNI (Targeted Nutritional Intervention)

What is striking is again the gap between reported apnea (23%) and those on CPAP/BPAP/APAP treatment (3%). We know that those with untreated apnea preformed more poorly in testing vs those without apnea in research (1).  Has sleep apnea in these children all been treated fully by other means (surgery) or have they not had sufficient support to continue CPAP/BPAP/APAP?

Children with ASD (15%) and ADHD (6%) are becoming more prominent as it is often diagnosed later in children with DS.

From this age range 60% had not been ill in the first 1/3 of the year.  Those that did get unwell 51% didn’t need to seek help to care for their child’s illness episode.  Only four 7-12 year olds were admitted to hospital (1.7%), all going to a normal ward.  One was found to have Covid-19.

 

Adolescent: 13-18 Years Old

127 young people were represented in this age range.

Their rates of prescribed medication are as follows:

29% on no medication

8% on medication for constipation

8% on long term antibiotics

3% on reflux medication

9% on inhalers

34% on thyroid medication

6% on CPAP/BPAP/APAP treatment for sleep apnea

7% on melatonin

4% on ADHD medications

 

Conditions apart from their Down’s syndrome: 85% of 13-18 year old children have ‘another’ condition aside from their DS.  34% had 3 or more other conditions.

Please note that for some of those on treatment their parents did not report the condition. It was likely assumed because they take medication they don’t have the condition any longer and here hence lower rates:

15% have no other conditions

41% have a repaired heart condition causing no current issues

19% have sleep apnea

8% have ongoing issues with their heart

34% have thyroid issues

8% have lung damage

8% have a bowel issue

1% are tube fed

9% have Coeliac disease

7% have asthma

23% have autism

7% have ADHD

9% have obesity

 

Supplements

53% are on no supplements

28% take a Multivitamin

19% take Vitamin D

12% take Probiotics

14% take Fish oil/Omega 3

9% take Vitamin C

1% take TNI (Targeted Nutritional Intervention)

 

From this age range 60% had not been ill in the first 1/3 of the year.  Of those that did get unwell, 57% didn’t need to seek help to care for their child’s illness episode.  Only two 13-18 year olds were admitted to hospital (1.5%), all going to a normal ward.  None were found to have Covid-19 but were treated for chest infections.

 

What can we infer from this information?

We are limited by the fact that widespread testing has yet to be rolled out across the UK.  A person only becomes confirmed with Covid-19 because they went to hospital, meaning they were unwell enough to need to go. There is a strong chance that many of us and our loved ones will have had Covid-19 and recovered from it at home. Of course, only time and hopefully antibody testing will tell.

 

But should we be more worried about my child/loved one with DS?

Lack of research in DS has lead to an assumption that people with the condition are at the same level of risk as the general population.  Is this a safe assumption to make?  A recent research paper from  of the Linda Crnic Institute for Down Syndrome, University of Colorado, voices his concerns about what we do know about the biochemistry of DS that might put them at increased risk.  We do not believe it would be prudent to ignore research that has actually been done on how those with DS handle inflammation.  The lack of evidence and research around the health of our loved ones has never been more glaringly obvious.

T21 Research Society are imminently releasing the first analysis of their worldwide survey of Covid-19 cases in people with DS.  Until firm information is available we suggest you review the Royal College of Paediatrics and Child Health’s shielding guide and speaking to their hospital specialist, if they have one.  Those potentially more ‘at risk’ of struggling with Covid-19 are those with complex medical histories so seek support in deciding what plan is best for your family for the immediate future.

We will a discuss the results for the adults who took part in the survey next as it will fit well with T21RS results.

 

Summary of ways you can support your child/young person now

  • Eat a rainbow

Providing your body with a broad range of colours corresponds to a broad range of micro and macronutrients in their most easy to absorb forms.  It is  preferable to improve your diet rather than just throwing in a multivitamin as an ‘insurance policy’ to a poor diet (2).  We recommend getting your young person interested in food preparation as soon as possible. Getting them interested and engaged in a good diet and eating a rainbow will set them up for success when they are no longer living at home!

 

  • Supplements & Vitamins

Supplementing is a BIG topic in our community and it simply isn’t an easy Yes or No answer. No amount of shouting in online forums will settle the matter. There are a few things that all children can benefit from, and kids with DS are still kids.  As mentioned above the NHS does have some very moderate recommendations for vitamin D, A and C in under 5s.

Vitamin D: the NHS suggest children from the age of 1 year and adults need 10 micrograms of vitamin D a day. This includes pregnant and breastfeeding women and people at risk of vitamin D deficiency.  Some groups will need more. For example those with darker skin, those spending majority of their time indoors, overweight individuals or on certain medications (anti-epileptic medications).  See your GP to discuss.

Oily Fish: can you eat cold water, oily fish a couple times a week to meet your omega-3 needs? If not, it would be worth adding an Omega 3 supplement to get enough.  You can learn more here.

 

  • Avoid processed sugar and carbohydrates i.e. Junk food

After eating simple sugars (like glucose, refined sugar, and fructose,) blood shows lab evidence of a lowered immune system within 30 minutes and can cause a 50% reduction in white blood cells’ abilities to kill germs.  This effect is most noticeable 2 hours after ingestion, but is still present 5 hours later (3).

  • Adequate sleep

Sleep is very important to the immune system function.  If your child is sleeping poorly or you are concerned about unidentified/untreated apnea please raise these issues with your doctor and do not be ‘fobbed off’.  Sleep issues are more common in DS.

 

  • Do not smoke at home

14% said had someone at home who smoked, exposing them to second hand smoke and therefore increasing their chances of illness. “More than 80% of secondhand smoke is invisible and odourless, so no matter how careful you think you’re being, your family still breathes in harmful poisons, putting them at risk of meningitis, cancer, bronchitis and pneumonia.” (NHS)

 

  • Do not avoid medical care

Just to re-iterate that, during this difficult time, it can be tempting to stay at home when we might otherwise follow our instincts and take our child to the doctor.  Please do not avoid seeking medical help as usual; other problems can occur that need help and hospitals are equipped to protect your child.

 

DSRF was pleased to collaborate with Positive About Down Syndrome on this project to maximise reach and raise awareness of the Foundation.