Kafoodle Marketing Manager Andy Baggott talks about his family’s struggles with their son’s food allergy and the increasing effects it is having on anxiety and eating behaviour.
I’ve read several articles of late about the effects of food allergies not just on the child with the allergy but on the whole family and thought it would be good to share our experience as a way of hopefully helping others (and also as a form of therapy for myself).
A recent study by Dr Kate Roberts from the University of East Anglia found that parents are living in fear and face significant worry, anxiety and post-traumatic stress due to a child’s food allergy and I think being in lockdown on-and-off for a year has only made things worse.
My son was 4 when he was diagnosed with a tree nut allergy (cashew and pistachio nuts) and is a big worry for us as parents and has become an increasing source of anxiety for him as he has gotten older.
His allergy has always made him aware of what he is eating and even from a young age has wanted to check ingredients on the packaging for foods that he was unfamiliar with. As parents, this is something that we’ve encouraged as we wanted him to be responsible for his own choices and to learn about what is in the foods that he eats.
As a family, we had managed his allergies over the years and not had any significant issues apart from 2 minor exposures but nothing in the past 2-3 years. This is why it was quite a shock when about 6 months ago he started to display unusual eating behaviour. At first, it was a case of a few foods that he would usually eat now all of a sudden he wouldn’t, which we just put down to his tastes changing as he grew, but within a week or two things had escalated to the point where we could count the foods he would eat on one hand.
It became a massive point of strain in the family, and he would literally sit at the dinner table crying because although he was hungry and wanted to eat he just couldn’t. He had become fixated that anything could have nuts in it (and let’s be honest the amount of foods that are labelled as ‘May Contain Nuts’ is staggering!).
At the worse point, he was only eating potatoes, carrots, eggs, apples and brown rice, and even for a couple who enjoy cooking, this was a challenge for my wife and me. After 2 or 3 weeks of these restrictions my son agreed to let us try and start to increase his options, I think he’d had enough of our various potato and egg combinations!
Even after introducing some new foods that he felt comfortable eating, there were still issues with anxiety at mealtimes. It had to be the same product and packaging that we’d had previously and he would need that packaging next to him so he could check the ingredients as he ate.
As we couldn’t see much of an improvement and he was still scarily thin, we tried to get some help, we spoke to doctors, nutritionists, psychiatrists and CBT experts and whilst they all had snippets of advice, there wasn’t much in the way of a solution being offered. Probably the person who was the most help was his school nurse, who came to the house for 2 hours and talked to us. Another good resource we found was BEAT Eating Disorders (https://www.beateatingdisorders.org.uk/) which is where I first read about ARFID (Avoidant Restrictive Food Intake Disorder) and although he still hasn’t been officially diagnosed with ARFID it does look likely.
What is ARFID?
- People with it avoid specific foods or entire food groups, restricting the overall amount eaten or limiting the nutritional range of food they consume
- It is not driven by issues around weight and body image
- Instead, there is low interest in food and eating, sensory issues or concerns about feeling or being unwell after eating
- That can include being very sensitive to the taste, texture, smell, or appearance of certain types of food, or only able to eat foods at a certain temperature
So 6 months down the line, where are we?
Our son’s eating anxiety has gotten a bit better and we are maybe up to between 15-20 different foods but we are still trying to get the help he needs but as with anything medical at the moment it takes a bit of a backseat to COVID, so we are still waiting for a referral.
Some days are better than others and foods are still being removed from his ‘safe list’ but when they do we try and add 1 or more onto it. The start back at school has also been a stressful time for us all, but we are trying to empower him to decide for himself what he wants in his lunch box, but he still finds eating near other children where he doesn’t know what’s in their lunch boxes a problem, but we’ll get there.
Some of the positives to come out of this is that he has taken more of an interest in what he eats and how things are made and wants to be involved more in the cooking and prep at mealtimes. There have even been a few times where he’s surprised us by eating Red Thai Fish Curry that we made together from scratch which he would have never eaten before.
It has been an incredibly stressful time for my wife and me and has pushed our resolve, sanity and relationship to breaking point at times, but we stand together in wanting to help our son get through this and I’m sure the whole family will all come out stronger on the other side.