OJ was diagnosed with an oral developmental delay at eighteen months old. We had sought help after we began weaning him and noticed his reluctance to accept solid food, and his tendency to gag while eating. At just over eighteen months old, he was referred for Speech and Language Therapy (SALT) to help his mouth muscles and chewing ability develop. In notes made from an initial observation of OJ attempting to eating a meal, the therapist wrote that ‘minimal oral involvement was noticed, and no lateral chewing movements were seen… OJ appears to have an oral phase difficulty in preparing the food in his mouth for a swallow. He does not yet have mature chewing pattern (side to side). This means he may find it difficult to manipulate the food in his mouth’.
OJ began to refuse food at around the same age, and in 2017, following another two years of difficulties in getting him to eat, he was referred via a consultant at our local hospital to the Food and Eating Disorders Team at Great Ormond Street Hospital (GOSH). OJ was prescribed vitamin supplements to ensure he was getting enough nutrients. He had blood tests to monitor his iron levels.
During his pre-school years, OJ lived mostly on ready brek and plain soft pasta. He refused to eat bread, dough, cake, pitta – basically bread in any form. At birthdays, he would lick the icing off cakes, but leave the cake itself. He did not eat eggs or cheese. For a short time he ate yoghurt, until this too was refused. The only fruit he ate was very thinly sliced apple. He did not eat popular toddler snacks such as raisins, bread sticks, cheese chunks or carrot sticks. He wouldn’t eat crisps, crackers, muesli bars or fruit snacks. The only meat he would eat was cocktail sausages, and only if these were peeled and hot. He refused all vegetables. Picnics, days out and playdates were difficult, because OJ would only accept pasta and sausages if they were hot. OJ ate his first piece of bread at the age of four and a half. It was a sweet brioche roll, and had chocolate spread on it.
His behaviour at the time included refusal to sit at the table for mealtimes, tantrums at mealtimes and refusal to eat, and what we observed as severe anxiety in food ‘situations’ such as picnics, family gatherings, visits to cafes, toddler groups and playdates. He became distressed when sitting near others who were eating strong-smelling foods (for example, cheese on toast), and this often affected his ability to eat his own meals. I would describe OJ’s attitude towards food during these years as fearful and anxiety-inducing.
Getting OJ and his brother ready for school/nursery was difficult on the mornings where his screaming tantrums and refusal to eat went beyond an hour in length, the clock ticking, his brother silently eating on his own, flicking worried eyes towards both OJ and myself, as I became increasingly anxious that we would be late, and less patient with the tantrum. A choice each morning – should I keep both boys here until OJ was calm enough to eat? And take them in late? Or should I send him in to school hungry, fractious, still screaming, and with his brother in tears yet again due to an upsetting start to the day? Each mealtime was hit-and-miss, uncertain what the reaction to the food would be, or how this would impact on the rest of the day for all of us.
OJ was treated as an outpatient by the team at GOSH for just over a year, and discharged in summer 2018. The team at GOSH indicated to us that OJ’s anxieties about trying and accepting food may have arisen as a result of the oral developmental delay during his formative stages of learning to manipulate food in his mouth. To this day, OJ occasionally finds chewing and swallowing difficult, and will gag easily. OJ also has a big aversion to strong smelling food, and certain textures.
Despite one or two successes, and a slight increase in the range of foods he would accept, we began to notice a relapse in OJ’s eating behaviour, on and off over recent years. We have always done a lot of work at home to get him to try new food, based on our own ideas, as well as the strategies we were given at GOSH. In 2019, we realised that OJ had outgrown these strategies, and in the summer of that year we decided we really needed some new support and guidance.
In August 2019 we tried to get a referral back to GOSH, but due to a change in their referral policies, we were told we had to go through other agencies first. There followed a frustrating three months of refused referrals. In late 2019 we were refused a referral by one agency, who suggested a diagnosis of ARFID (avoidant restrictive food-intake disorder) with associated ASD. OJ does not have a formal diagnosis to date, although we do think he fits the profile for sensory-related ARFID.
We stepped back from trying for a referral during the pandemic, but took up the case again in May 2021, and in July we were finally accepted for referral. OJ is due to be seen by a consultant at Lister Hospital in November 2021.
Life at present:
OJ’s behaviour at school has always been excellent. His food issues do not appear to outwardly affect his learning or behaviour at school, and we feel that the depth of his eating issues are not fully appreciated, or acknowledged as a cause for concern, due to his high academic ability and his ability to behave well. The picture for us at home is very different. OJ is very good at masking while he is at school, and will quite often come home very hungry, because he has not eaten enough.
We still have daily outbursts at dinner time, refusal to accept meals, and a constant cycle of cooking two meals every mealtime (one for OJ and one for the rest of the family). His diet is very restricted and limited to a small range of foods. Eating out at restaurants, cafes, parties, playdates, family get-togethers and holidays is very difficult. Spontaneity and last-minute invites are almost impossible. We find ourselves explaining it to friends and family whenever we go for visits or meals. Explaining why he needs his ‘safe foods’. Explaining the implications if he doesn’t eat, or doesn’t have his safe foods to fall back on. Explaining how that affects the enjoyment of outings and social situations, both for OJ and for us too.
OJ has the same home-packed lunch for school every day. He is now in Year 4, and his lunch has remained exactly the same since he started in Reception. If there is any change in this, any discussion about it, suggestions for change, or any attempt made to put different food in it, he simply will not eat. For now, we are resigned to sending him to school with a packed lunch of his ‘safe’ foods, in order to guarantee that he will have enough energy for the day at school. OJ is nine years old, and his school lunch contains items from the baby food aisle at the supermarket. The social implications as he gets older are one of the things we are most concerned with; we do not want him to be eating baby food when he starts secondary school.
In the long term:
Along with this, are the implications for his long-term health and physical development. His diet is so limited that we worry about the nutrients he is missing out on. How will this affect his body? His teeth? Does this have implications for diseases such as type-II diabetes and heart disease as he gets older? We are concerned about this becoming a more serious issue as he heads towards puberty, and how this may affect his growth and physical development over time.
OJ is starting to realise that his eating is an issue, and has recently begun to voice his thoughts and feelings about food. In a video we made for a recent BBC Look East article that featured OJ’s story, he said ‘I wish I could eat different things’. We think that OJ is becoming more aware of the fact that his relationship with food is different to that of his peers. It is an emotional process to observe, watching him beginning to realise the implications, and hearing him talk about it. We are learning that OJ genuinely wants to eat a wider range of food, but that he isn’t able to. We’re not just dealing with fussy eating here…
A big part of our story, is our struggle in trying to get OJ’s eating issues accepted as more than just ‘fussy eating’. We feel very fortunate to have at least had some treatment for him over the years. But without a formal diagnosis of anything in particular, we have no real idea of how to help him with his relationship with food, or how to equip him to be an independent eater as he matures. And this makes talking about it difficult, particularly with those who do not appreciate the impact his eating issues have on OJ and on our family. We gets lots of advice from well-meaning friends and family. I can pretty much guarantee that we have tried every suggestion and strategy there is. I have yet to come across a suggestion that we haven’t already tried at some point over the years. We feel a sense of despair every time someone says ‘maybe if you don’t give him his safe foods…’ or ‘he’ll eat if you let him get hungry enough’. For OJ, this simply is not the case. And the effects are complex, and go far beyond food and mealtimes alone.
As parents, we feel guilt and shame about the situation, and more recently frustration about how powerless we are to solve an issue that we now know is beyond our capabilities. OJ’s older brother has always loved food and eating, and has always been very adventurous with his eating and willing to try new things. We did all the same things with OJ when we weaned him, but the differences between the two boys and their eating are huge. In some ways, this brings us the relief of knowing that OJ’s eating issues perhaps aren’t down to anything we did or didn’t do. But it doesn’t help us with how to deal with it. And that is what we need most.
It is worth pointing out that without our daily interventions, OJ would eat even less than he does now. It sounds awful, but at times we have wondered whether if we stopped trying then we might get the help we need – he would lose weight, his behaviour would deteriorate, his progress at school would slip. And perhaps then we might be taken seriously? I’m not happy to accept that as a way forward. We want support, and we feel that OJ’s situation warrants it.
As OJ gets older, we will not always be with him to give him the support he needs at mealtimes. He’ll be out with his friends. Off on school trips. At sleepovers. We don’t want him to be resigned to existing on his ‘safe’ foods. Or to be embarrassed. We want him to be able to manage and enjoy mealtimes independently, and to enjoy social situations where food is involved. Because of this, we feel his situation warrants more input and guidance to support OJ and to support us as his parents. We don’t necessarily want him to have the label of a condition, but we do wonder whether having a name for what OJ has (whether that is ARFID or something else) will at least give us something to work with, and hopefully a pathway towards treating it.
We also hope that by sharing our story, others in a similar position will find support, understanding and solidarity.