Updated: Sep 29, 2020
Healthy Eating Week has just started and there is lots of fantastic information out there about how we should nurture our bodies by making the 'right’ choices about food. But as always I find there is little information for those of us for whom eating is not always simple.
If you have a child with digestive issues, time, expense and what your child will and will not eat can make it really tricky. For many children like my son Spike, it is not always safe to eat, it can be uncomfortable, frustrating, even painful. One of the things that I have found most useful is not to do with diet at all but simply to eat together.
As a parent or carer, I want to feed my family in the best way but that can take patience and imagination as well as healthy recipes. I can spend hours preparing meals in the knowledge that they might be rejected, or sit across the table as my son eats with his fingers, makes a terrible mess of the table and his clothes or complains about what I have put in front of him! I understand that from the outside that might seem unacceptable but, given his history and condition, it is a joy to see Spike eat at all and we have learnt to be tolerant and to make eating an enjoyable experience for him - and for all of us.
As a baby, Spike was a vigorous, frequent vomiter. As a result, he suffered chest infection after chest infection and spent more time in hospital than out. We tried all sorts of things including dairy-free, soya-free and gluten-free diets but nothing stayed down. He had various tubes inserted so we could feed him through his nose, into his tummy or into his small intestine and even through a gastrostomy (a tube inserted through a hole in his stomach) but these still didn’t prevent food and fluids passing into his lungs. At the age of 3 he had a 'fundoplication', an operation that tightened the top of his stomach to prevent him from vomiting. This stopped the vomiting but didn't resolve his problems and he went on to be diagnosed with something called 'chronic intestinal pseudo obstruction' (CIPO), a condition where the muscles and nerves that work together to propel food and poo along the intestine don’t work. The only option available for him was to have an ileostomy. This is an operation that creates an opening in the abdomen to drain poo straight from the small intestine into an external bag which is emptied by hand.
Today Spike is happy and thriving. He rarely aspirates; he has his ileostomy bag to collect poo that would normally come out of his bottom and his gastrostomy so we can give him medicine, vitamins and calories directly into his stomach. At long last, it is safe for him to eat, and he eats what works for him – still generally dry ‘beige' food. He never willingly eats a vegetable!
Part of the process has been making mealtimes fun rather than just a necessity. The easiest way to do that is to eat together. Traditionally, many families would eat together at set times. Modern life, different timetables and pressures have meant that is often no longer the case. But if at all possible, it's worth trying to reinstate it - at least some of the time. In our experience, it has several benefits:
Collaboration - Preparing meals together has enabled Spike to be more in control and more trusting of the food he might eat.
Distraction - Don't focus just on the food! Even if your child is struggling to eat, sitting together, being relaxed and making this a time to chat and laugh will take the pressure away from the act of eating.
Encouragement - Make food fun and allow your child to play with the food on their plate (if you are a tidy freak you might have to learn to let go a little) and encourage them to try something new - maybe share something off your plate.
Lead by Example - Cutting your food up into small pieces, eating slowly and not over eating will all help to prevent reflux and discomfort.
Educate - Teach your child what happens inside you when you eat. Make kitchen experiments, and discuss the science behind food and digestion. Knowledge is always engaging and empowering.
Connecting - Eating together is a very simple way for the family to connect each day and check in with each other about whatever is going on (it's a good idea to ban phones and mobile devices from the table).
Time and cost saving - Preparing food for everyone at once can save money or time and make clearing up quicker. You can even try to enlist your child / children / partner in with the work - good luck with that :)
My experience with Spike led me to write a book, Gut Feeling, in collaboration with Evelina London Children's Hospital. I wanted to help other families understand what happens in our bodies when we eat food and what can go wrong, I wanted to explain the medical language and procedures which can often be baffling to understand. I wanted to share some of the challenges we as parents/carers face and suggest ways to help deal with them.
Gut Feeling is a journey through a child's digestive system, it is full of illustrations, fun facts and templates. If you think Gut Feeling would help you or someone you know then please sign up to my mailing list and I will send a pdf copy.
Here are a few of my facts and tips to get you started:
FOOD FACTS & TIPS
First and foremost - act on the dietary advice you are given by your dietician, speech and language therapist and anyone else working in your team.
Reduce Reflux - If your child has reflux stay away from fatty and sugary food. They can stimulate reflux, cramping and diarrhoea.
Reduce Wind - Wind can simply be as a result of the air we swallow when eating or talking but it is usually caused by the gases made during the breakdown of food. If your child has painful wind, reduce it by cutting back on foods such as broccoli, lentils, raisins, onions, bagels and beans.
Beware - fibre without fluid stays hard so drink an extra glass of water!
Continual Energy - Lunch is not going to be converted into energy until mid-afternoon or early evening, so a child may need regular nutritious snacks to maintain a continual supply of energy.
Probiotics - There isn't yet enough evidence around probiotic supplements, but it has always been recommended to us that we give Spike a supplement. Probiotics are the good bacteria that help to restore the natural balance of the gut. They are available in live yoghurt and fermented vegetables such as sauerkraut and miso.
Prevent dehydration - Every bodily function, especially digestion, needs water. Water transports nutrients, it flushes away waste and it controls our body temperature. Read my blog on hydration HERE
Normalise meal times - adapt what you are making to suit your child's difficulties. i.e do baked potatoes but take the potato out of the skin - mash it and refill the potato. Pre-cut food into finger sized portions so that your child isn't left struggling or feeling ashamed.
There will always be a reason why your child is avoiding food - if your child has significant difficulties with eating it is important that you are referred to a specialist clinic before the issue impacts on their social and emotional development and on your family functioning.
We have been lucky to be supported by teams of dietitians, paediatricians, gastroenterologists, psychologist, speech and language therapists and occupational therapists. Each professional has supported us on everything from unsafe swallow, enteral feeds, optimum nutrition to specialist chairs and cutlery.
If you are struggling and would like to chat then please do contact me.