Pharma Drama Video: Probiotics for constipation and gut health in children and young people with Down’s syndrome

In this video Simon Gaisford, Pharma Drama, explains a research project that he is running in partnership with Down’s Syndrome UK, Down’s Syndrome Research Foundation UK, 21 Together and a major probiotics manufacturer. The aim is to determine whether daily probiotic supplementation can help with the management of constipation and gut symptoms in children and young people with Down’s Syndrome.

See the video or read the transcript below:

Full transcript of the video

Simon Gaisford:
Welcome to Pharma Drama, the channel where we look at the science of health care and health care products. In this video, I’m going to talk about a research projects I’m running looking at the potential role of probiotic supplementation in the management of constipation and gut symptoms in children and young people with Down´s syndrome.

I have partnered with a number of Down´s syndrome charities, including Down´s Syndrome, UK, Down´s Syndrome Research Foundation UK and 21 together, as well as a major probiotic manufacturer to run this project. And indeed, you may be watching this video because you’ve received an information leaflet from one of these charities, inviting you to allow your child or young person to participate.

I should say at the outset, say, if you have a child or young person with Down’s Syndrome and they suffer with constipation or poor gut function, then I would love for them to participate in the study. But I need you to make the decision to allow them to participate fully understanding what the study is about and why I put it together.

So assuming that you’d like to know more. Put the kettle on. Make a beverage and let’s make a start.

Over the summer, I’ve been getting to know a child with Down´s Syndrome, and this has been a wonderful experience getting to know you such a wonderful young man. I’ve learnt so much about the condition and met such wonderful people. It truly has been an enlightening journey. One thing I discovered is just how frequently children and young people with Down syndrome suffer from poor gut function and constipation.

You probably know the stats better than me, but roughly 80 percent of children and young people with Down’s Syndrome have gut issues and constipation, with boys more likely to be affected than girls. When I discovered this, I was both surprised and excited. Surprised simply because I wasn’t aware of such a big issue and excited because in my day job, I run a research group at University College London looking at how and why properly formulated probiotics can help improve gut function in patients with a range of conditions.

We have looked at patients with obsessive colitis, liver disease and Parkinson’s disease, for instance, as well as explored how probiotics can be used to eradicate persistent gut infections without the use of antibiotics.

Although it might seem surprising that probiotics might be useful in such a diverse range of conditions, there is an underlying mechanism which has become clear over the past 10 years of my research. But before I tell you what that is, I should first tell you what a probiotic is.

Handily, the World Health Organisation has published a definition, so I don’t need to make up my own. A probiotic is defined as a live micro organism that, when administered in adequate amounts, confers a health benefit on the host. Should you wish to read the full definition for yourself – I have added a link to the article below. Now, that definition might not mean much to you, and I think it needs some explaining. Let’s start at the beginning with live micro organism. The live part is easy. The probiotic must be living. But what is a micro organism? Simply- and the clue is in the name. It’s a small living creature. You will probably have heard of some of these, I’m sure, as they include bacteria, algae, protozoa and fungi.

Most of the micro-organisms that are accepted as probiotics and that you see listed on the packaging of probiotic supplements are either bacteria or yeasts, which are a type of fungi. Does it surprise you, the bacteria and yeast can be good for you if you eat them? Many people, I think, assume bacteria are bad and I’ve only found in dirty places. But in fact, bacteria and yeasts are all around us and we couldn’t live without them.

For instance, we use bacteria to make yoghurt and yeast to make bread. You might also know there are bacteria and yeast living in your gut, but have you a feeling for how many? The answer is there are trillions and trillions of bacteria and yeasts in your gut. So many, in fact, that if you counted all the cells in your body, you would find only 10 percent of them are human cells. The remaining 90 percent of micro-organisms.

We call the mixture of micro-organisms in your gut, your microbiota. Your microbiota is critical to good health, although I don’t have time to go into great detail here. In essence, all the bacteria and yeast inside you are eating food and excreting waste compounds just like you and I do. Although on a much smaller scale. When micro-organisms excrete waste compounds that are useful to us, we call them good. And when they excrete harmful or toxic compounds, we call them bad. The balance of good to bad microorganisms in the gut is critical in maintaining good gut function. You obviously want as many good micro-organisms as possible, and in many cases, disease states have been linked with imbalances in the ratio of good to bad micro-organisms.

Although the relationship between the gut microbiota and the human body is complex and multifactorial, in many cases, there is one principal effect of having an imbalance of good to bad micro-organisms. Constipation. Imagine the effect of chronic constipation on gut health. The intestine is a long tube lined with cells. These cells are tightly pressed against each other to form an impenetrable barrier. And any compounds in your gut that your body wants to absorb must pass through the cells. This is how your body regulates what you absorb and ensures only good things reach your bloodstream.

When the intestine is full of faecal matter, however, there is a constant pressure against the cell wall. Over time, this pushes the cells apart so they no longer form tight junctions. Gaps appear, causing a leaky gut. The leaky gut means all sorts of compounds can pass uncontrolled into the bloodstream, and these compounds can lead to the development of many disease states. So how does this relate to Down syndrome and this research study, I hear you ask?

Well, as I noted earlier, roughly four in five children and young people with Down´s syndrome will have constipation and associated poor gut function. And as you might have guessed by now, studies have shown an imbalance in the ratio of good to bad microorganisms in their microbiotas. It is not yet clear what causes this imbalance, but it seems highly likely that the imbalance results in constipation. Constipation can be treated with laxatives such as Movicol or Laxanose, but these are simply to make the gut empty. They do not correct the imbalance in the microbiota that causes constipation in the first place.

My work on probiotic supplements has shown that the probiotic bacteria they contain can often help restore the balance of micro-organisms in the microbiota in favour of the good. I won’t explain the science here. There was a separate video for that if you were interested. And the link is in the comments below. But the basic principle is that by restoring a natural balance to the gut microbiota, the gut is able to function normally again and periods of constipation are reduced. Because the gut is no longer full of faecal material all the time, the cells of the guts walk and reform tight junctions with their neighbours and a barrier function is restored.

The aim of this study, therefore, is to see whether taking a daily dose of a liquid probiotic supplement can improve constipation and gut health in children and young people with Down´s syndrome. We are seeking to recruit participants who have been diagnosed with constipation and who are aged 18 or under on the 1st of January 2022. There is no lower age limit. All participants will be provided with a three month supply of a liquid probiotic supplement. The product, which is classified as a food supplement, will be shipped to your door and should be taken daily on an empty stomach. We recommend taking it first thing in the morning before breakfast. The dose is not large, 70 millilitres and the product is fruit flavoured.

At the start and end of the trial, we asked that a parent or carer rates the child or young person’s level of constipation using a simple scoring system that we will provide. We will analyse the results from all the participants in the study and will determine whether or not the probiotic supplement helps improve constipation and gut health in children and young people with Down´s syndrome. We would also like to understand the changes in the ratio of good and bad micro-organisms that result from taking the probiotic.

To do this, we would ask a small subset of participants to collect stool samples as the trial progresses, which we will analyse in the lab. We are aiming to recruit participants by the end of December 2021, with product being shipped in early January 2022. Why would I like you to consider allowing your child or young person to take part?

Firstly, the long term effects of constipation, are wide ranging and dramatic. And the only options currently available are laxatives. As I mentioned earlier, these may deal with the symptoms, but they do not address the underlying cause. This study aims to assess whether probiotic supplementation can address the cause.

Secondly, I believe the long term consequences of poor gut function may play a role in the development of children and young people with Down´s syndrome in terms of reduced growth rates and the early onset of Alzheimer’s disease in later life. So optimising gut function may have multiple and Long-Term benefits.

And thirdly, by taking part in the study, you’ll be contributing to a potential new approach to the management of gut health in children and young people with Down´s syndrome, which may benefit all in the Down´s Syndrome community.

One question you might have is what if my child or young person is on medication? Fear not, this is not a barrier to the study. Your child or young person should continue to take any and all medication as advised by their doctor, and we would ask you at the start and end of the trial to disclose any medication they are taking, including antibiotics and laxatives.

If during the trial you see a change in bowel habits of your child or young person and you want to change the amount of laxative either up or down – you are free to do so, although we advise discussing any changes with their doctor. We have partnered with a number of Down´s Syndrome charities to help us reach out to parents, to help us design the study and to work with us in disseminating the results. And it would be fantastic if you would consider allowing your child or young person to take part.

If you decide you would like them to take part, please fill in the consent form that you will have received with the project information leaflet and returned to me either by email or post. If you haven’t received these documents, please email me directly and I will send you copies. My email address is in the comments section below.

As a thank you for taking part, we will also ship you a further three months supply of the product at the end of the trial. Free of charge. If you have any other queries or questions about the study, you can also email me directly. And if you know of other parents who might be interested in the study, please forward my details to them. Otherwise, thank you so much for watching, and I very much hope you’ll consider participating in this exciting project.

If you would like more information on the project, please contact Simon Gaisford at; s.gaisford “at”

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