RHC Feeding Clinic

Some children have to take a mainly liquid diet, or are already on tube feeds and may suffer from vomiting, reflux or just discomfort preventing adequate weight gain. In these children we may change the type of feed given, reduce the volume and /or prescribe treatment to

• Control reflux
• Improve gastric emptying
• Stimulate appetite
•  Refer to the complex feeding team in Paediatric Gastroenterology 

High Energy Milk and Drinks

In practice these drinks and special milks are only really suitable for children who really cannot eat (or learn to eat) solid food.

There are a wide range of these products on the market, but while they sound as if they should helpful for increasing weight gain, there is little evidence that they are effective and we have seen many instances in our clinic where they have suppressed appetite for other foods and in some cases even slowed weight gain.    

If these products are started it is important to monitor their effect over time. If they do not result in increased weight gain or have only a short term effect, they should be stopped and other strategies adopted. 

If you are worried about feeding problems and issues such as food refusal or picky variable eating, the Help my child won’t eat leaflet may provide the answer to some of the issues that are worrying you.

Your health visitor (for preschool children) or your GP (for school age children) can usually offer helpful advice and support. If need be they may refer you on to:

• Dietitian – to assess whether their diet is good enough and give you advice on managing their eating behaviour
• Parenting support such as triple P, for support in managing their behaviour in general
• Paediatrician to investigate worries about their growth or possible nutrient deficiencies
• Speech therapist to investigate how they chew and swallow.

If these people are worried and you live in the Greater Glasgow health board area , they may refer on to us, but we do not accept referrals straight from primary care.

Almost all families encounter feeding issues such as food refusal, picky eating and other problems at some stage. In order to cope with these it is important to understand what influences a child’s feeding behaviour for better or worse

The key factors that put a child off eating are:

• Not Being Hungry – help by avoiding snacking before meals and high energy drinks, offer small portions, leave at least 2 hours between meals or snacks
• Unhappiness or Stress – Help by trying to make mealtimes happy, keep meals short, praise food eaten and let child self feed.
• Short Term Illness – Help by waiting for it to pass, they will eat again when better.

Useful Resources

• My child still won’t eat leaflet
• Stop any high energy drinks  (link to Weaning from high energy milk and drinks)
• The two hour rule for severe food refusal
• The role of treats and snack

The team has been in existence for 18 years, with various staff all working only part time in the clinic.  We hold weekly clinics – currently mainly via attend anywhere. Seven year ago we were shortlisted for the BMJ child health team of the year.

The current team:

• Consultant paediatrician (Charlotte Wright)
• Clinical psychologist (Emily Fraser)
• Paediatric dietitian (Jen Bain)
• Assistant psychologist (Collette Moore)
• Specialist paediatric registrars

We also work with speech therapists, other dieticians and members of other specialist teams and are helped immensely by admin support.

• Full dietary and nutritional assessments
• Tube weaning
• Consideration of need for tube feeding
• Observed or video’d meals
• Kitchen clinics
• Kitchen therapy sessions

Anonymous patient story

“When we arrived at the Feeding Clinic team run by Prof Wright, we had already tried different approaches to get our son weaned from tube feeding, including contact with the Graz feeding clinic in Austria and rapid cessation of tube feeds, but none of them had worked for us.

Our son was non-verbal with a complex medical history (born prematurely, oxygen dependant for several years, tracheostomy, gastrostomy and ASD),  so we knew it was going to be a challenge .We did not know at the time where the journey would take us, but as a Mum, I recognised the need to try, to give our son the best chance of  a more positive longer term outcome. 

Yes, it was about weaning our son from tube feeding, or at least reducing complete dependency, but it was also about the social occasions that we take for granted when families come together and enjoy a meal together.  Christmas 2019 was a milestone as it was the first time, our son then aged 14 had eaten a full Christmas dinner!
The journey to get there has been long, (5 years) with ups and downs, but consistent throughout has been the huge support from Prof Wright and her team at Glasgow University Hospital.

What I learned along the way was to manage my own behaviours, keeping the environment calm, not be anxious. Recognising at the beginning not to set unrealistic expectations, that there was no rule book, for e.g. always having meals at the table (that did come, but much later) and accepting that minute steps over time, aggregated to key milestones.”

First steps

“We started by “desensitizing”. Our son, because of his medical history had an aversion to anything around his mouth, but I did recognise that he was most relaxed when  watching television or on the computer, so I took those opportunities to just gently touch the side of his mouth with a soft flexi-spoon (nothing on it) every evening or when we could  , but at least 5 x to start with, so he knew there was an end.  Eventually we tried with yoghurt, literally with a dot of yoghurt on the spoon but then he would tolerate no more. Always the same process, the same coloured soft flexi-spoon, he would first look at it, then smell and then taste.

This coincided with the first reduction in tube feed, which was the removal of daytime feeding. This was a big step for us. When I look back now, it is amazing that I too was dependant on those tube feeds, almost as a security blanket to ensure our son was well nourished. It was the motivation to keep going, so I started to put a finger tip of egg yolk on the flexi-spoon and again encouraged our son to lick at least 5 x.

Then one evening, I sensed that he wanted to try some more, so I increased the amount of egg yolk. Over several weeks, we progressed to scrambled egg (runny to start with so it was easy to swallow. This was all done while our son was watching computer! He was relaxed.  This went on for weeks, until gradually he was having more scrambled egg. By the time we had our next clinic we were already adding some cheese to the egg and our son was tolerating that. But I also knew that living on eggs alone was probably not going to be a life long choice.”

Extending the food range

“For the next several months, I tried extending the food choices, we tried yoghurt (without success), we had some success with jelly and then over time I tried adding different things, so mashed beans to scrambled egg, crumbled cake into the jelly. I also tried mashed avocado with varying degrees of success and then there were various other foods that we tried without success.  Some days we had great successes, like a full scrambled egg eaten, other days he simply was not interested or became agitated. Those days were not easy, they were hard, but we just kept going as “tomorrow might be a better day” and usually they were.”

Reducing reliance on tube feeds

“At the same time, his tube feeds were very gradually being reduced between clinic appointments. What’s maybe interesting to note, is that as our son’s oral intake of food increased, he became less tolerant of the tube feed being connected at night time, so I usually waited until he was asleep.

To start with, the tube feed reductions were small so mentally it felt manageable. Our son was not losing weight, but he was not gaining any weight either. It was the motivation to try and increase calorie intake, to get ready for the inevitable next steps of more feed reductions. There were some clinic appointments where we felt not ready for a feed reduction so gentle persuasion from the feeding team with an outline of a plan was enough to keep going.

As our son was now quite familiar with eating scrambled egg we did at some point move away from feeding at the computer to “incentivising”. It was just a natural progression to incentivise computer time after eating, it worked for us. But any time we were attempting to introduce a new type of food, I would just offer a tiny amount while he was still on the computer and usually had to try  this 15-20x before that food type was accepted.”

Widening Food textures – learning oral skills

Early on in the process, I recognised that texture as well as the taste of food was important for our son, so it was always about taking a small step (mashed potato, and then gradually extending with blended casserole for e.g.). , I used to blend boiled carrot, chicken with lentil, into a very easy to swallow smooth paste.

We even tried haggis and neaps at one point, all blended and eventually adding potatoes. Gradually, as the tube feeds continued to decrease, our son was eating more of food that was blended, easy to swallow format. We used to take some in a food flask if we were going out for the day and this went on for months as they became his diet staples. I also noticed a change in his eating skills, from licking his lips, to using the front part of his mouth to chew and then swallow.

Those small steps of gradually accepting smooth, blended, soft wet foods, took several months and a few years! The process is long and slow, but necessary to continue to create a positive environment and to give our son the time to learn those basic skills of seeing, smelling, tasting and eventually being comfortable to swallow. These are steps that come naturally to babies as they wean, but they were skills that our son had to learn for himself and be confident with. As he was non-verbal , I did use sign language to encourage swallowing and eating, so we added communication to the mix.

Working with school

In the early stages of the programme, I did not inform our son’s school, mainly because I just felt we were building a good way of working at home, and was nervous about a “bad experience” if someone tried to be too enthusiastic at school however well intended.

So, it was several months into the programme, before I finally felt confident to notify the school and for the them to also support us.

Our son has progressed from always having potato & tuna for lunch to choosing his own lunch from the school menu and he has several school favourites (sausages & mash, baked potato with cheese!)

Real progress at last

Signs that things were progressing was when he took the initiative himself to open the fridge door or cupboard looking for food! And then there were the experiences of “forgetting “to pack a blender while on holiday! And realising that actually he was ok to take fork mashed food -another milestone achieved!

Gradually we built up a menu of different foods he would like, eventually eliminating the tube feeds. We have had to be creative finding medicines in liquid format, that are easy to add to foods almost unnoticed, as these could no longer go down his tube.

It took several months later before we finally felt confident enough for the gastrostomy tube to be removed, the final milestone of our journey.  It remains a process of trying different things, with surprises along the way like chicken curry, Chinese stir fry, fish without the chips. He has never liked chocolate or yoghurts – I can live with that!

It has been a long journey, but with a very successful outcome. We are very grateful to Prof Wright and her team, for their unwavering support and encouragement. And finally, to our son for having the courage to try.

Some children are started on high energy milk and drinks (e.g. pediasure, fortini, infatrini) in order to increase weight gain.  These may be effective in the early months, but if they are continued they all too often spoil the appetite, without increasing overall intake. 

Some children may be taking almost all their diet from these drinks, while others just take them as a supplement to their solid diet.  After careful assessment we would most commonly aim to reduce and stop these drinks, which usually results in improved  appetite, reduced food refusal and no change in weight gain or growth. 

In early research we found that tube weaning resulted in weight loss but no slowing of growth.

We have shown that tube fed children had similar appetite patterns (satiation) to healthy children. 

We found that stopping sip feeds did not result in weight loss and in some  children weight gain increased.

We have also described our underpinning philosophy, how the clinic operates and its cost effectiveness.

We also see some children or young people where there are major worries about slow weight gain or underweight and /or their ability to eat effectively and safely.

In many cases, after a detailed assessment of growth and nutritional status, we have been able to offer reassurance  that growth levels are acceptable, given the child’s underlying condition, but in other cases we may advise that tube feeding is needed.

Many children eat a quite limited diet and most of these children grow and develop normally, even with apparently inadequate diets. However, if there is concern about this, we would usually recommend a multivitamin supplement suitable for the child’s age and current diet and we may be able to offer some behavioural work to encourage relevant dietary diversity.

Many of these children have other features of Autism Spectrum Disorder and behavioural work may need to be undertaken by their local community team.

Very occasionally children eat such a limited diet that they become severely deficient in one of the key nutrients they need, most commonly Iron, but also sometimes vitamin D (Rickets) and rarely vitamin C (Scurvy).