A not so merry-go-round

From what I have seen and read in news articles and on social media forums, when it comes to getting help for eating issues like OJ’s, the endless round of referrals and then being declined is a big feature of everyone’s stories. It is no different for OJ. I have a thick folder of all his notes and referral letters, including the refusals.

In August 2019 my partner and I decided that we would contact the team at Great Ormond Street Hospital (GOSH) where OJ had been treated previously as an outpatient. Things had been going downhill, and we needed new strategies and further support.

We phoned them and were told that we would need to contact our GP and go through the whole referral process again. There followed a very frustrating round of referrals and refusals by four different health care teams. The GP sent each referral letter out, and each one came back to us with a ‘no’.

After three months, I said to the GP that we would take some time out to think about what we wanted to do next, even though we did not have a clue what that might be. We were frustrated and disheartened. Two of the refusal letters suggested a diagnosis of ARFID with associated ASD. I began reading and researching it all. The term ARFID had never been mentioned in OJ’s previous treatment, or in any of his paperwork. Something in the literature clicked. This sounded exactly like OJ!

Shortly after this, the pandemic hit, and we knew there would be little hope of getting a referral that year.

We took it up again in early 2021 and were finally accepted for a referral in June 2021. The appointment was set for five months later, in late November. Yesterday we had that appointment – the referral that had taken us more than two years to get!

At the appointment we were seen by a consultant paediatrician (the same one who also saw OJ and referred him to GOSH several years ago). As always, I was hopeful that this meeting would yield some answers, the possibility of support, the potential for some sort of diagnosis, or a pathway forward for us. OJ’s eating behaviour has really gone downhill recently, and we are increasingly worried about where that may lead.

I am resigned to feeling helpless about managing OJs eating issues and to feeling like I don’t know how to proceed or how to help him. I am not a clinician, and I don’t have medical know-how or much knowledge at all about disordered eating. Hence, it was a terrible shock to have an experienced consultant paediatrician look me in the eye at yesterday’s appointment and hear her say the words, “I’m sorry, I don’t know what to do”.

I didn’t realise it was possible to feel even more helpless than I already did…

The consultant explained to us that because ARFID is a fairly new term, and because those who suffer from it appear to have many different forms of it in addition to other needs, that it is difficult to diagnose, and therefore there is no clear treatment pathway. I was told that it may not be possible for OJ to have a straightforward or clear diagnosis without considering other issues. I was told that unless a child shows a willingness to change and improve their eating, agencies might not accept them for referral. Indeed, OJ’s own discharge paper work from GOSH in 2018 includes the following sentence: “If in future, OJ is motivated to change his eating but struggling to, we could consider a re-referral back to our team.”

This idea of the child being willing to change is an interesting one. How do you prove that either way? It’s a bit ambiguous. What if the child genuinely wants to eat a greater range of foods, but at the same time they are terrified to try? I fully appreciate the dilemma for clinicians and medical professionals here – if someone doesn’t want to eat, then how do you make them?! But where does that leave families like ours? At one point in yesterday’s meeting the consultant and I just stared at each other, her words hanging in the air. I looked at her and thought, ‘Is that it then? Am I to just accept that life will always be like this for us? Or worse, are we to sit around waiting until OJ eats so little that he has to be hospitalised?’

OJ spoke on camera earlier this year in a BBC Look East documentary about food phobias, saying that he would like to eat a bigger range of foods and that he wished he could. I know that for OJ there is genuine fear there, and there is something going on that needs to be addressed at a mental, emotional or psychological level in order for him to make progress. To me, this demonstrates that he is definitely in need of treatment, and that to a certain extent this proves that he does have a willingness to change. OJ genuinely wants to be able to eat a greater range of food, but he just doesn’t know how to. He doesn’t want to be like this. He needs help to get better. But where do we go from here? I don’t blame the healthcare professionals, but the system is clearly not set up to support families at all stages of their treatment journey.

The appointment yesterday lasted for an hour, and we left with no clear pathway. The consultant said she would make a referral to a dietician at our local hospital and also to GOSH. She warned us that at least one of these is likely to be refused.

We have been instructed to restart OJ’s daily multivitamins. I asked what would happen if his eating didn’t improve, and we were warned about the possibility of tube-feeding. I was not prepared for this to be said in front of OJ! The consultant said to OJ during the appointment that she would be happy to arrange a visit for him to a hospital ward of children so that he could see what it would be like. (I’m guessing she was using this as a strategy – to frighten him into eating). I told her that as a strategy that sort of thing doesn’t work. We have already tried this sort of approach at home, many times over the years. OJ is frightened by it, yes absolutely. But will it make him eat? No. It won’t. His fear was palpable, and he carried it around with him all day. He spent that evening before bed asking about how feeding tubes work, and how they are put in and taken out.

At present OJ is just on the 50th percentile for weight and on the 70th for height, and he has fairly good energy levels. His behaviour and academic progress at school are excellent. He masks a lot, and it comes out at the end of the day, and at weekends. From a health professional’s viewpoint, OJ’s situation does not jump out as a concern. I’m wondering why it needs to get to the point when it is! Surely it makes sense to address it now, before things get worse?!

A huge worry for us is that OJ has recently started to refuse some of his safe foods, and his diet is becoming increasingly restricted. He is more wilful and argumentative. He is only two and half years away from going to secondary school, and puberty and growth spurts.

I intervene daily, making sure that we have enough of his safe foods for his school lunches. I intervene by blending up the garlic, onions, carrot and courgette with the passata for the homemade pasta sauce I make. This is the pasta sauce that OJ will only dip the very tiniest amount of pasta into, and only if it is in a separate bowl. And he’ll only dip into it on a good day.

I intervene by agreeing with OJ as I give him his meal, what and how much he will eat. OJ ensures fastidiously that these agreements are kept to in minute detail, literally down to exactly how many pieces of an item will be attempted. How many circles of carrot. How many tiny nibbles of the edge of a broccoli. These discussions are necessary, otherwise with most meals he would choose to eat nothing. They frequently end with arguments, and occasionally with a complete refusal to eat. He usually eats with his hands, and although we have taught him how to use cutlery, sometimes we lose the cutlery battle in order to ensure he attempts at least some of the meal. If we’re having a bad day, there is no agreement and no reasoning to be had. It’s exhausting.

I intervene by preparing ahead of time when we are invited for dinner, and ahead of playdates and birthday invites, and ahead of school trips.

I intervene so that he goes to bed with something in his stomach, or to school with enough energy to start the day. The alternative means arguments at bedtime, a night of disrupted sleep, lateness to school, emotional upheaval for the rest of the family, tears and tantrums. When you have another child to get to school, or when you have to get to work on time yourself, and when you all need a good night’s sleep in order to be ready for the next day, the alternative is not always an option.

I intervene by preparing two meals most mealtimes, so that OJ can eat, and so that the rest of us aren’t bored by eating the same meals time and time again.

I intervene by making sure the cupboard is well stocked with lactulose, and we try again and again to encourage OJ to eat a wider range of foods, so that he doesn’t miss yet another day at school because of constipation.

I intervene when he has a meltdown about the food on offer, and have his safe food ready to go, so that the rest of us can enjoy a calm, uninterrupted meal.

I intervene so that OJ eats at least something every day. Without these interventions, I suspect that his weight would slip, his progress at school would likely suffer, his interactions with friends and his brother would change, and his behaviour would deteriorate.

I asked the consultant at yesterday’s appointment, whether these interventions are perpetuating OJ’s situation and making things worse. I asked whether I should stop doing them. Straight away she said no. That I definitely shouldn’t stop. To be honest, rather than making me feel better, this leaves me feeling frustrated and powerless. I feel that as parents we are being left alone to manage the situation at surface level only. I am frightened and upset that the root cause is not being addressed, and that no-one seems willing to help us. What frightens me more is the possibility that they don’t know how to. What does the future hold for OJ?

At this point, I would be happy for a referral for some sort of treatment to be accepted – anything – just to be given something to go on. It would also be nice to feel that wheels are being set in motion towards some sort of diagnosis. For now though, the wait continues, and daily life with OJ’s eating issues remains pretty much the same.

Published by dancinglottie

Mum, ballet teacher, sports massage therapist. I love the great outdoors and wildlife. Dabble in local politics now and then. Worry about environmental issues quite a lot. Miss NZ every day, but love living in Hertfordshire.

3 thoughts on “A not so merry-go-round

  1. Hello, I found your blog through the BBC article today and reading this brings a lump to my throat. My son is almost 4 and the roundabout is real 😦 we are a year into referrals etc and don’t feel like we are any further, just feels like we’re going in circles. Also all the interventions you do to look after your son… I feel this so deeply, I feel like I am constantly acting and worrying and planning behind the scenes to ensure that he has enough energy/nutrients to get through the day and then feel like I am constantly failing. Thank you for speaking out, sending your family strength and love for the New Year x

    Liked by 1 person

    1. Hi, thanks for your comment and for sharing your thoughts. It sounds like things are really tough, and to be a year into referrals must feel so disheartening. I’m sure that what you are doing for your son each day is amazing, and I completely understand how hard it is. There is a real community of support and empathy out there – the Arfid Awareness UK website and social media groups are brilliant. Keep going, keep in touch, and tap into the support online. Best wishes for the new year and for the referral process – here’s hoping you get somewhere with it really really soon. x

      Liked by 1 person

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