Lisburn mum's fears for five-year-old son who only eats toast and milkshakes

A Lisburn mum has expressed her fears for her young son who has not eaten in days after developing a sensory food avoidance disorder.

Melanie Hainon says that she is desperate to get help and support for her five-year-old son Cole who has stopped eating food entirely due to a condition called avoidant restrictive food intake disorder, with the only nutrition he gets coming from special milkshakes.

The worried mum says that she suspected her son was on the autistic spectrum from an earlier age as from the age of two his diet had become quite restricted due to his unwillingness to eat most foods.

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However despite this, she had seven "safe foods" that she was able to give Cole - pizza, corn on cob, fish fingers, biscuits, McDonald's chicken nuggets, toast and sweets.

As Cole grew older he became even more restrictive in his eating, eventually reaching a point where he would only eat toast that had to be nearly burnt in order for him to eat it.

But in the past few months his condition has got worse, Melanie says, with the young boy now refusing to eat anything at all. The situation, she says, is having a huge impact on his health as his immune system has become very weak and he lacks energy to a point where some days he is unable to get himself out of bed.

Melanie says that she has been desperately trying to get help for her son, but while her local GP has been very supportive she has not been able to get any form of treatment or therapy for Cole, with him recently being rejected from the CAMHS service run by the Belfast Trust.

Speaking to Belfast Live, Melanie said that she was very disappointed with the rejection letter that she received from CAMHS and believes that her son's condition was not taken into consideration before he was turned away.

The letter asked for evidence of Cole having negative internal thoughts about himself and his weight and if he was frequently throwing up after food, something that Melanie believes no five-year-old would understand.

She said: "This is not just picky eating. This is an eating disorder, a medical condition that is serious. When my son was a baby he would eat anything, he had his favourite Sunday dinners, fruit, vegetables, crisps, juice you name it he would eat it.

"He started showing signs of what we now know as ARFID at two years old, but being referred for an ASD diagnosis we thought it was all linked and with very little awareness of ARFID out there it never even crossed my mind.

"Things got worse and a year and half ago he was referred to a dietitian and diagnosed as extreme selective eating with anemia, he was put on daily medication to help give him the vitamins and minerals he needed alongside his seven safe foods, pizza, corn on cob, fish fingers, biscuits, McDonald's chicken nuggets, toast and sweets. We thought at this time things were bad but never did I expect to be where we are now.

"Since September my son's eating has been extremely limited, safe foods dropping by the day to the point where my boy has only ate toast for 11 weeks now, 3 weeks ago he stopped eating and starving for days at a time before eating a slice of toast and was put onto build-up milkshakes everyday to help his body through this. He's recently been with the GP once a week with ongoing low immune system issues like tonsillitis, chest infections and in A&E with breathing difficulties, and missing school some days because he is low in energy.

"We are now on day 10 of no food and barely any fluids and his build-up shakes have tripled per day. We have until the weekend to get these three milkshakes per day for him, I don't know where we will go next and have been told of a possible admission to hospital for a feeding tube which would be completely distressing for him.

"Not many know about ARFID as it is a relatively new diagnosis and I want to raise awareness of something that has been life changing for us as parents, as a family and most importantly my baby boy.

"I feel so helpless seeing him this way and I'm exhausted trying to get him the help he needs which seems impossible at times but I will never give up! After 4 years on the ASD waiting list we have had no other option but to go private for a diagnosis, now CAMHS are proving to be absolutely useless for my son regarding ARFID as he doesn't meet their criteria for an assessment and it's probably just his Autism to put it in their words. Fighting for a child's medical needs should never be this hard and something needs to be done."

The Belfast Health and Social Care Trust has been contacted for comment.

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