Feeding difficulties are very common in healthy children as well as in children with a cystic fibrosis, and health visitors are often asked for help with managing feeding. Feeding difficulties tend to fall into two main categories: not eating enough and fussy eating (not eating a sufficiently wide range of foods). The approaches to these two difficulties are broadly the same in terms of how you can understand the problem and make changes. We start with two case examples and then describe the approach to take.
Case Study – Aliya (6 years old)
Aliya is six years old; she lives with both her parents. She is the oldest of four children; she has a brother aged five and two sisters aged four and two. Aliya was born with a heart condition called pulmonary hypertension and she needs regular reviews from a specialist cardiac centre and has daily medication. Although Aliya has no special dietary needs, it is important that she maintains good weight gain as she may need surgery in the future. Mum, Maia, says that Aliya has never had a good appetite and she has always had to offer food more frequently than Aliya would naturally ask for it. Aliya is always the first to finish at mealtimes, as if she would prefer to be doing something else. Maia says that her other children all enjoy eating; she can often use food as a treat or reward for them, but for Aliya that never works.
Dieticians monitoring Aliya’s growth have shown mum that although she has always been on the lower end of the expected weight for her age, over the last few months her weight has started to drop off her expected centiles. The medical team discuss with mum that it is important to get more calories into Aliya. Although the dieticians suggest ways of increasing the calories, her mum knows that it will be hard work.
Not Eating Enough
Even in healthy children we know that poor eating is common, but it can get better quite quickly. However, when you have a child like Aliya with a physical illness, and medical professionals who stress the importance of getting calories into her, most parents find their anxiety and worry is sky-high. The risk is that all mealtimes become something to be avoided, scary, horrible and no one wants to be there, let alone eat anything.
Case Study – George (4 years old)
George has a kidney condition called bilateral renal hypoplasia which means that when he was born, both his kidneys were very small. He is monitored and doing well. He is an only child living with both parents. Although George is gaining weight, his parents are worried about his eating as he is very fussy. He will eat fairly large portions but only of a small range of foods he likes, and limited in texture. He will only eat food mum or dad have cooked. He likes a very smooth texture, without lumps and absolutely refuses any change.
George needs calories so his parents are very reluctant to ‘rock the boat’ by making any changes. They are worried about him starting school as they think he will go the whole day without eating.
George’s story is also common in his age group. George’s parents might have found that they would have been more confident at making changes to the food they offer him if he didn’t have a physical health condition. Like Maia, Aliya’s mum, their anxiety is higher because of the importance of a high-calorie intake for their children’s continued good health. Both case examples show that the approach to managing feeding difficulties when a child has a physical health condition requires expertise and sensitivity. Quick-fix suggestions are not easily implemented when parents know that their child’s health could rapidly deteriorate if weight loss occurs.
Understanding the Problem
The first step for making recommendations for change involves an assessment of all the issues. We have provided an example of a Feeding Behaviour Assessment (opposite), which you might find helpful to fill in to help you identify the key issues for your child.
Though this assessment might seem very detailed, it is helpful to review all these factors to see not only where things are going wrong, but also where things are going right. You might find that this assessment gives you an idea of where the difficulties are occurring and so where to focus your efforts.
In general, when changing feeding behaviour in young children, there needs to be some consideration of what is happening at different levels. First, the content of the mealtime itself – exactly what food is offered, when and how. Then second, at the child level – exactly how you manage your child at the mealtime, what you do and how you manage the process of the meal itself. So make sure you know in advance what food you are going to give your child and how you are going to manage the whole mealtime. Mealtimes involve not just the child and food, but also the parent and other family members.
You have to take into account instructions from the medical team as well as practicalities like a place to eat and buying the necessary food (which might be expensive). Changing mealtime behaviour can be stressful and difficult. It is important that as parents you get the support you need from the medical team as well as practical and financial help if necessary. You may need to ask the medical team, your health visitor or social work department at your child’s hospital.
The following plan is an example of what you may need to do to make changes to mealtimes and manage your child:
1. Mealtime management
Dietetic and medical requirements and goals should be established first. Get some agreement from the medical team about the ideal and minimum acceptable dietary intake. Make sure you are clear about the exact meals to be offered in terms of what type of food, the texture and quantity. For example, with Aliya above, there was agreement that setting a weight target would cause mum more anxiety at mealtimes if Aliya refused or ate very little. The best tactic was to focus instead on Aliya eating and finishing. Mum gave smaller portions and took advice from the dieticians about sources of additional calories that did not cause Aliya to feel too full.
Organisation of mealtimes
There needs to be agreement in your family on who is present and who is in charge. It is very easy for people to offer well-meaning advice, but if there are too many instructions, this can cause confusion for your child and undermine you.
The person who prepares the meal must be in agreement with the recommended food offered. There should be one person in charge and everyone needs to respect that person and support the methods being used. Mealtimes should occur in a consistent place (the usual place for all the family to eat). It is easiest to manage the food given and eaten if it is on a plate at a table, or suitable eating area. However, children often want to eat while watching TV or playing with electronic devices. It is important that you as a parent decide where the meal is going to take place and stick with it. It should be where you feel you have most control over what is going on and the focus can be on eating.
2. Child management
Mealtimes can become very stressful for parents of children with medical conditions who refuse to eat sufficient quantities. When parents become very stressed or anxious, this can result in negative interactions with the child at mealtimes. Consequently, both parent and child come to find mealtimes unpleasant rather than enjoyable. To change this, mealtimes have to be repositioned as times where fun happens. For example, you might explain that you have decided the time has come for change and that mealtimes will be different from now on. You might make it fun by involving your child or others in the family, in making place names or place settings, making menus or buy new (cheap) special plates, etc.
Reward your children with your attention
You may need some support to begin to enjoy being with your child at mealtimes. This is a good way to discover that your own attention is the most powerful reward you can give your young child; there is no need for sweets or treats. Being with your child and showing pleasure at their achievements will quickly show benefits.
Begin at a point where your child can achieve
It may sound odd, but you won’t ever get a chance to show them how pleased you are if you set the first goal beyond their reach. For example, you start your new mealtime plan by praising your child for what they can already do, maybe telling them that they are good at eating, and you know it won’t be long before they can eat more things.
Increase the goal using very gradual exposure to the types of food they currently refuse by introducing tiny amounts on the side of their plate but telling them the first goal is not for them to eat it, but to get used to it being on their plate. For example, this might be one tiny vegetable such as a pea. Or even just getting your child to touch a food they don’t normally eat, which might be on your plate or a separate plate on the table.
If your child refuses to move on a step, just go back to where they are and tell them how well they are doing. For some children, just having a non-preferred food on the table is enough of a start.
To help you achieve more successful mealtime behaviour, follow this simple pathway, which uses small steps towards the eventual goal:
• Start with praise for letting the new food be nearby;
• Then on the plate;
• Then touch;
• Then lick or taste;
• Then eat;
• Then increase the quantity eaten once it is established that the new food is now on the ‘nice’ list;
• Give clear instructions to your child so they know the expectation. Rather than asking them if they want to try, tell them clearly what you want them to do. This isn’t being strict, it is being clear. Asking a question will result in them saying ‘no’;
• Give your child regular opportunities to achieve the mealtime goal. So, if the goal is to increase the amount of food your child is eating, this may mean having several small mealtimes per day, rather than two or three large ones.
Also be aware of the significance of how you and your family talk about food. It is worth bearing the following tips in mind:
• Try to make positive statements about food and eating at opportunities when your child is present. You might have stopped talking about food or lost interest yourself so try to restart nice comments about food: ‘This tastes really nice . . . this is my favourite . . .’ etc.;
• Encourage your child to make positive statements about food and appetite, so they get used to saying words like ‘yummy’ or ‘I’m hungry’;
• Discourage scornful comments about food, especially from other children or family members;
• Discourage negative statements by your child about disliking food; say something like, ‘You might not like it now, but if you keep trying, one day you will like it . . .’;
• Notice your child’s cues when they show they are interested in the food. Even if they do not eat it, notice when the child looks at the food, talk about it and touch it.
It is important to keep going as it may take a while to bring about a small change, and you may feel very frustrated by the slow progress and feel tempted to give up. It depends on your child’s personality and their age, but pre-school children can take a week or so of repeating the same step before they make some noticeable change. Older children can take longer as they have possibly built up ideas in their head that they will find difficult to change. This may mean you need support to keep going, hence it is important for everyone in the family to agree with the plan and then stick to it consistently.
Even if your child is not being fed by a tube, the next section is worth reading as it details the planned stages to help with introducing food to a child who was not happy about eating any food at all. It demonstrates how gradual the change needs to be for some children, and that because this takes a considerable amount of time, the changes need to be planned carefully, and parents need to have support in place, in order to be able to maintain a long-term plan.
For a range of reasons, some children with physical health conditions will have required a period of time having their nutrition delivered directly into their stomach, either the whole of their nutritional needs or as top-up feeds. Usually this is from a tube fed through the nose (nasogastric) tube or a tube directly into the stomach (gastrostomy). Sometimes the medical team are satisfied that there is no longer a medical reason for the tube to remain and it is time to start eating food instead. This can cause major difficulties for some children who may have never fully experienced eating orally or developed an appetite.
It is essential that weaning a child from tube feeding should only be done with medical advice and support. These case examples show the general approach taken to tackle the weaning of a child who has been dependent on tube feeding, but if you are in this situation, talk to your medical team and dietician about how to proceed with this with your child.
Case Study – Arthur (11 months old)
Arthur was referred by his gastroenterologist because he was refusing to eat. He is aged eleven months, lives with both parents and an older sister aged three years.
Arthur was born five weeks early and was noted to have a poor suckle reflex. He refused the breast and so was bottle-fed, but this was a slow process, and he had severe reflux causing coughing and vomiting throughout the feed. He was considered to be in danger of his feed going into his airway and so the decision was taken to tube feed him until he had grown strong enough with good muscle tone for the reflux to stop.
Arthur was now at the point when he could be safely fed by mouth. However, each feed was a time-consuming process, which became increasingly anxiety-provoking and aversive for his parents as they feared he would vomit the feed. Rather than being enjoyable, feeding became an unpleasant experience for Arthur as well, with the bottle being associated with pain and vomiting. Weaning to solid foods was also started but this re-stimulated the vomiting and Arthur began to cry at the sight of the spoon.
Management of change from tube to oral feeding
The process of this change is described for Arthur:
A videotape was made of a mealtime with Arthur being offered solid foods by his mum, who was the major carer. His mum had chosen appropriate food, texture, portion size and utensils for Arthur’s age. She placed the bowl of food near to Arthur and he touched the food tentatively. Arthur held an empty spoon. Arthur’s mother was wary of putting a spoon loaded with food to Arthur’s mouth in case it stimulated vomiting. She also kept control of the bowl.
Arthur gagged when his mother loaded a spoon with food even though she had not offered it to him. It was clear that although Arthur’s mother was trying hard to maintain a friendly atmosphere, the interaction was strained, and Arthur showed increasing signs of distress the longer he was sitting near the food. Children of the same age with no history of food refusal would have grabbed the bowl, touched the food, attempted to load a spoon themselves and put it to their mouths, and they may have been simultaneously chewing on some finger foods. Arthur’s mum played nicely with Arthur to make him feel comfortable in the situation; she recognised when he was getting distressed with the food and spoon and moved them away.
The aims were to gain the parents’ trust in the intervention, make some changes to the current mealtimes and make them pleasurable. The initial goal was to support the friendly atmosphere seen in the video assessment. Arthur’s mother was given positive feedback and the psychologist acknowledged the strain of mealtimes and they discussed reasons why they were not relaxed. Arthur’s mother felt that the psychologist had listened to her concerns, had an understanding of why these difficulties had developed and accepted her need for a slow pace of change. The first step in the plan was to instigate regular family mealtimes that included Arthur. Arthur was to be presented with food of a very runny texture. His parents were to show Arthur his food and to ensure they ate their food with him, showing it was enjoyable; utensils were to be present, but no spoons were loaded for Arthur.
A programme of desensitisation to solid food was initiated. This involved mum playing with the food for Arthur in the following way: puréed food was first placed on his mother’s finger and dabbed around the plate and increasingly closer to Arthur, stopping at the moment he showed signs of distress. Purée was then placed on a finger food – for example, a breadstick – and again placed nearer to Arthur until he would hold the finger food himself. His mother’s empty finger was then moved increasingly towards Arthur’s mouth in a playful manner at a mealtime. Arthur then began to accept an empty spoon to his mouth, held by himself, then an empty spoon held by his parents. These steps took several weeks and did not progress smoothly but moved backwards and forwards depending on the emotional state of all concerned. Arthur continued to be tube fed during this time, so there were no ongoing anxieties about his nutrition.
Changes to mealtimes
Some changes began to occur during these initial stages; Arthur began to suck runny purée off his own fingers and finger foods. And he was beginning to show interest in other people eating, particularly his sister. Arthur then began accepting a spoon dipped in purée from his sister. He then began to accept a trainer beaker of water and would take about two sips per day.
The range of food that his parents had thought to offer him increased. Arthur was beginning to taste a range of foods more willingly. The next breakthrough was that Arthur allowed his mum to touch his lips with gravy on her finger. Overall, Arthur’s interest in food and mealtimes and his willingness to let his mum and sister offer food without stimulating distress or vomiting increased his mum’s confidence and motivated her to offer more food. The atmosphere at mealtimes became less strained and his parents even began to look forward to breakthroughs. Arthur’s parents had begun to change their perception of him from non-eater (tube-reliant) to eater.
Arthur had begun to accept minute amounts of food orally but still received all his nutrition via a tube. Arthur had not experienced feeling hungry or interest in food, although he was beginning to experience positive mealtimes. A goal now was to stimulate hunger, and this would involve reducing his tube feeds. At this stage, it was essential to consult with his gastroenterologist and dietician and to clarify a plan of action with the agreement of all concerned.
The plan was first to establish that his weight was satisfactory and there was some weight to ‘play with’. In some cases, it may be necessary to increase tube feeds to put up the child’s weight before any reduction can begin. Tube feeds were reduced by a small amount for two consecutive days then returned to their original amount. This pace satisfied his parent’s need to maintain the weight gain that they had struggled for. Any changes in the quantity of oral food Arthur consumed were noted. Tube feeds were then reduced for longer time periods. There was an initial weight loss that his parents had been expecting, so it was easier to handle. There was a slower, but noticeable increase in Arthur’s oral intake of both solid foods and water. This pattern proceeded with gradually longer periods of time with a reduction in number of tube feeds. Arthur’s parents received regular support and his weight was monitored.
Arthur began to accept thicker textures and, although vomiting occurred on occasions during this phase, it gradually reduced. Arthur began eating more finger foods that did not need much chewing. The amount he ate increased and eventually all tube feeds stopped, without him losing any weight. It took twelve months from him first being seen to the removal of the nasogastric tube, with fortnightly appointments. Arthur was then monitored much less frequently for a further year.
Eating Disorders and Disturbed Eating Attitudes and Behaviours
Case Study – Lottie (15 years old)
Lottie lives with both parents and has cystic fibrosis. Calorie intake is very important in cystic fibrosis because the body works harder to get oxygen into the bloodstream and energy is needed to fight off any infections. Lottie complained a few years ago of hating her stomach and that she didn’t like having to eat high-fat foods. Lottie’s rate of weight increase slowed, and it transpired that she had in mind a set weight that she would not exceed, which was considered underweight for her height.
As a consequence of her cystic fibrosis, Lottie needs to take enzymes with fat-containing foods in order to digest the fat. Otherwise she will not gain weight and could develop a serious bowel blockage. She recently became vegetarian and stopped taking her enzymes and vitamins for ethical reasons and, as a result, her weight is dropping.
Young people with physical health conditions are at risk of developing eating disorders just like their peers without physical health concerns. Additionally, there are some medical conditions that place great importance on calorie intake and most children are routinely weighed and measured at every clinic visit; this means such children may have had a greater emphasis placed on weight gain and how they look than their peers. Some conditions require medical treatment in order to gain or maintain weight and, in some instances, this can lead to problems. For example, there is a recognised form of eating disorder associated with diabetes in which young people have learned how to manipulate their insulin dose in order to control weight gain. There has been research into the rates of eating disorders developed in children and young people with physical health conditions, and while the rate of eating disorders is quite low and similar to the general population, the rates of disturbed eating behaviours or attitudes to eating are high.
Some symptoms of an eating disorder can be seen in children and young people with physical health conditions. However, typically this does not involve all the symptoms, or symptoms haven’t persisted for long enough to warrant a diagnosis of an eating disorder. An eating disorder can only be diagnosed through a comprehensive assessment by an experienced mental health professional. However, it is also important to be aware of some of the ways that young people with physical health conditions might behave that could be symptoms of disturbed eating behaviours or attitudes to eating. Signs to look out for include:
• A poor appetite even when free of infection
• The avoidance of foods associated with gastro-intestinal symptoms or a reduction in the amount of food being eaten more broadly
• The manipulation of enzyme or insulin use
• Not taking required dietary supplements or following recommendations
• Feeling full easily
• The denial of hunger
If you are concerned about your child developing an eating disorder or their attitude or behaviour to food, it is important to raise this with the team. It is usual for young people to deny they have any difficulties at first, and it can be hard for them to admit to the difficulties they are experiencing.
Returning to Lottie’s case study, the team had become concerned about her weight loss and developed a plan initially with her parents, and then Lottie herself, to address this:
Plan of action for Lottie
1. A meeting with her parents and some team members, without Lottie, to acknowledge concerns over weight loss.
2. A full assessment of all the possible reasons for her poor weight gain: physical, nutritional, the amount of food eaten and psychological factors.
3. Agreement between the team and her parents to remove the focus on weight gain at clinic visits, reduce the frequency of weighing and to stop goal-setting for expected weight targets (which is common practice in medical teams).
4. The team psychologist and dietician to see Lottie alone for individual support. Areas covered included expert help on nutrition and digestion to help Lottie understand how food restriction and enzyme manipulation would impact on her body and her health, as well as a life and lifestyle assessment including teaching Lottie some cognitive behavioural techniques to help her manage worries and solve problems.
5. The gradual reintroduction of pancreatic enzymes (a gradual desensitisation approach).
6. Monitor changes in Lottie’s weight and her reaction to gaining weight.
7. Work with Lottie to alter her cap on gaining weight and reduce the amount of value she was placing on her physical appearance.
• Feeding difficulties in young children are common but can cause high levels of anxiety in parents of children with physical health conditions.
• Step-by-step approaches after a thorough assessment of where the problem lies can be effective.
• Parents need support and guidance from the healthcare team and the support of everyone at home to be able to lead on making changes.
• Children who have been tube fed can be reintroduced to oral feeding with a slow-paced, gradual approach but this MUST be done under medical guidance. • Disturbed eating attitudes and behaviours are seen in young people with physical health conditions, particularly in the older age range. They might need specialist interventions, so it is important to ask for support and advice about how to approach them.