Mum of Elmswell four-year-old talks about the constant worry due to her son’s avoidant/restrictive food intake disorder
The mum of a four-year-old boy who is about to start school said she lives in constant fear he will not eat.
Toby Edwards, of Elmswell, near Bury St Edmunds, is autistic and his mum Abbie Myers, 29, is pushing to get him an official diagnosis of avoidant/restrictive food intake disorder (ARFID).
The stay at home parent, who previously spoke to Suffolk News about her struggle to find a special school place for her son, said he will only eat a very limited diet of: Ella’s Kitchen melty sticks, Skips, Kinder biscuits, ice lollies and occasionally yoghurts.
Toby eats fries from McDonald’s every day and refuses to eat frozen chips, as he can tell they are not the same.
The four-year-old started dropping foods from his diet at around 15 months old, does not enjoy people eating around him and is highly sensitive to smells.
Abbie said: “ARFID is not fussy eating, it is an eating disorder.
“A child with ARFID won’t always eat when they are hungry and they struggle with recognising when they are.
“It is a constant worry everyday, wondering what the day holds and whether your child is going to eat.”
She is particularly worried about Toby starting at a special school next month as in different environments he will not eat and needs constant reminders to eat his safe foods.
“His teacher has assured me she has experience with ARFID and Toby will be able to have his safe foods whenever he wants them as he doesn’t have set times he eats, he just snacks at intervals throughout the day,” said Abbie.
“The parents of children with ARFID are trying their best and are not lazy,” said Abbie, who was previously a childcare practitioner.
“We want them to eat and try new things, but they simply won’t.”
Abbie was advised to contact the eating disorder charity BEAT for one of its online ARFID courses.
Speaking about help available for her son and others with ARFID in Suffolk, she said : “I think the support is next to nothing.
“Twice we have been under a dietician and because Toby's weight is as it should be and his bloods, they keep discharging him.
“I wish they would stop focusing on weight. You can have ARFID and only eat pizza or burgers as a safe food, which are high in calories so will keep your weight fine.
“All this time I have said that I know Toby has ARFID. I want him to have the diagnoses so that ,if God forbid, he dropped more foods we are on the right track for help and support. It's just not fair and not okay.”
A spokesman for Norfolk and Suffolk NHS Foundation Trust (NSFT) said it was developing a pathway to deliver a specific ARFID referral pathway for children and young people within Suffolk, based on its successful Norfolk model of care.
NSFT is encouraging parents, families and carers of children and young people with ARFID to share their thoughts, experiences and ideas and contribute to the development of this pathway.
This can be done by joining the trust’s ARFID co-production and peer support group.
Anyone who wants to share their experiences or join the group can email particip8@nsft.nhs.uk
A spokesman for WSFT said due to a complaint made against the trust by Abbie Myers it would not be commenting while Toby’s case is being investigated.
The spokesman said the trust was not commissioned to provide an ARFID service.
