AN outraged mum claims doctors told her to starve her son to cure his 'fussy eating' – so he would be so hungry he'd be forced to eat.
Katy Spence, 33, took her eight-year-old son Xander to the GP after fearing his poor diet would leave him blind.
However, Katy claims she was left horrified when the GP suggested she deprive Xander of any food in the hope he would either get so hungry he'd eat anything or lose enough weight to qualify for a referral to the eating disorder team.
Now NHS admin worker Katy is refusing to 'keep quiet and ignore' what she feels is a shocking lack of knowledge about eating disorders among GPs.
Katy first booked the appointment for her son in a desperate bid to get help with his avoidant-restrictive food intake disorder (ARFID).
The disorder means he can be very sensitive to the taste, texture, smell, appearance and even temperature of certain foods which can lead to avoidance or intake restriction.
The schoolboy has a list of just 11 'safe foods' he will eat – each of which has to be a specific brand and prepared in a specific way.
In the hopes she'd get a confirmed diagnosis she took him to Brannel Surgery in Saint Austell, Cornwall, but says she was 'fobbed off' as Xander is a healthy weight.
Katy claims the GP advised her to starve Xander in the hope of treating his condition.
The mum was not only left distraught by the doctor's suggestion but also wondering how long it would take social services to intervene if she did heed the advice.
Katy, of Saint Austell, Cornwall, said: "I went to the doctor for a referral to the eating disorders team for Xander and he told me, in a roundabout way, that I'm not strong enough as a mother to deal with these issues.
"He was basically telling me I needed to man up and just give Xander whatever the family is eating.
"I explained that if I give Xander my food, he will not eat and the doctor said if Xander lost weight then they would be able to do further investigations.
"The doctor was basically saying that if I starve Xander and he falls underweight then he would be accepted on the eating disorders team.
"I'm not prepared to do that. I'm not prepared to sit and watch my child starve himself because that's the only way the doctors will help him.
"I wonder how long it would take for me to get reported to child services if I followed that advice and Xander went into school and told people 'mummy won't give me any food I can eat'.
"It made me so angry and then I got really upset which made Xander upset.
"The doctor told me he's seen children like Xander time and time again and starving them works.
"How many parents are following that advice and going through the horror of watching their child starve when actually therapy could have helped instead?"
Earlier this month, it was revealed that a 17-year-old lad, known only as Jake from Bristol, was left deaf and blind after eating only chips, crisps, ham and sausages for a decade.
Katy said she's terrified that her son will end up with similar health problems if doctors don't learn more about ARFID.
She added: "It really baffles me that the GPs don't know more about these various conditions.
"It's taken me googling the condition and joining Facebook groups to realise Xander has all the symptoms.
"I even took print outs about it to the doctor but he refused to take it from me. The GPs just think they know best.
"Surely there must be some sort of mental health provision to help Xander before he becomes like that boy in the news who went blind because he only ate chips?
"It's so scary seeing things like that and knowing the physical impact ARFID can have.
"I'm not usually the person to be shouting out loud about this sort of thing but enough is enough.
"I can't even imagine Xander growing up with health problems because I didn't shout enough.
"I wouldn't be able to live with myself if I didn't push the doctors more."
Xander first started struggling with his eating after catching food poisoning from a 'dodgy' chip shop sausage on his first birthday that left him poorly for five days.
And from the age of three he started to develop what seemed like phobias of certain foods.
When Katy mentioned Xander's problems with food to the doctors at Brannel Surgery, she claims she was told her son would eat whatever he was given if he was really hungry.
What is avoidant-restrictive food intake disorder?
Avoidant-restrictive food intake disorder (ARFID) is a condition characterised by the person avoiding certain foods or types of food, having restricted intake in terms of overall amount eaten, or both.
They may have had a distressing experience with food, such as choking or vomiting, or experiencing significant abdominal pain.
This can cause the person to develop feelings of fear and anxiety around food or eating, and lead to them to avoiding certain foods or textures.
Some people may experience more general worries about the consequences of eating that they find hard to put into words, and restrict their intake to what they regard as ‘safe’ foods.
Significant levels of fear or worry can lead to avoidance based on concern about the consequences of eating.
Source: Beat eating disorder charity
At first, the mum and dad trusted doctors' advice and tried not to give into Xander's refusal to eat, simply giving him the meals Katy had made for the rest of the family.
The toddler starved himself for almost three days before his 'heartbroken' mum gave in and decided she would let him eat what he wanted.
Katy says she mentioned her son's increasingly restricted eating to various GPs at Brannel Surgery four times over the next five years but claims her concerns were repeatedly dismissed.
Xander's restricted eating has become a daily battle for Katy and Malcolm who have watched their son become incredibly anxious around certain foods as if he's 'phobic'.
The foods Xander will eat include Aldi penne pasta with mature cheddar cheese but only if the cheese isn't melted, McDonald's chicken nuggets, cream crackers and Aldi sausage rolls.
The lad's mum, who makes him take a multivitamin everyday, constantly worries that Xander isn't getting enough nutrients as his meals are all "very beige and highly processed".
When Katy and Malcolm try to get Xander to eat different foods he will sometimes vomit or reduce his list of 'safe foods' even more.
Katy said: "Xander is very very limited with what he eats and he's very brand specific.
"Everything he eats is very beige and highly processed.
"The only fresh thing he eats is strawberries and they have to be the tip top most perfect strawberries otherwise he can't eat them.
"He even struggles with his safe foods if they're the wrong shape, if they have a slight mark on them or if they're not cooked the right way.
"If his food isn't exactly how he needs it he struggles to eat it like he's scared of it.
"It's like he has a phobia. If it's not perfect, he doesn't know it's safe and he gets scared.
"We've never stopped trying with Xander. We always ask him if he'll try things but if you push him too far he'll eat it and then vomit and that just increases his anxiety.
I'm not prepared to sit and watch my child starve himself because that's the only way the doctors will help him
"Then when we've pushed him too much he drops another food from his list of safe foods because he doesn't trust us.
"It is a really difficult situation to be in.
"We can't go out for meals, I would never even dream of going abroad on holiday and Xander struggles to even go to his friends' houses."
Katy is now planning to speak to Xander's school to see if she can get her son the help he needs through a different route.
Katy is also determined to raise awareness of ARFID so other families don't have to face the same struggles she has.
Katy said: "I know the NHS is stretched and they do a fantastic job on the funds available but I can't understand why there isn't more information about ARFID in GPs' surgeries.
"It is a recognised condition so why aren't they seeking out more information on it?
"Especially with the focus on mental health, particularly child mental health, as it has been.
"Instead Xander is being left to go through these issues seemingly alone. It really breaks my heart.
"I can't sit back and watch him go through this and just hope he gets better any longer.
"When you look at your child and realise they tick every box of this condition but their doctor won't recognise it you feel so defeated like 'what else can I do?'.
"But I'm going to work hard to find Xander help a different way.
"Even the smallest amount of help to understand why he's eating the way he is and to help him expand his horizons will mean the world."
Brannel Surgery refused to comment.
NHS England and NHS Kernow CCG were also contacted for comment.
Source: Read Full Article