Our kids were left unable to eat or walk by Long Covid and treatment was ‘torture’ – but docs don’t know how to help

Co-founder Frances Simpson – a university psychology lecturer whose two children have been ill since March – reached out to parents on social media to poll their kids’ symptoms.

Almost 90 per cent of the 162 parents who replied said their children were still sick three months or more after they first fell ill.

Half were primary school pupils aged between 6-11, and 40 per cent were in secondary school.

Unable to eat because of 'rotting flesh' stench

Gracie Hayes, 10, is one of them.

She has been poorly since last summer with dizzy spells, exhaustion, rashes and a racing heartbeat.

Initially, she had none of the typical symptoms of Covid-19 like a cough or a temperature.

Instead she was struck with distorted taste and smell which made all foods stink of rotting flesh – a condition known as ‘cacosmia’.

Previously fit and healthy, Gracie used to think nothing of joining mum Claire for 5km park runs near their home in Newbiggin, Northumberland.

But during the two months she spent bed-bound with Long Covid she could barely manage the short walk to the bathroom.

Claire, 47, explained: “We went on a family trip to Blackpool last summer and a couple of days later Gracie was eating chicken when she started complaining that it was rotten.

“We all tried it and it was fine, but Gracie couldn’t finish her meal. She pushed it away.

“After that, she said everything I put in front of her smelt of rotting meat. 

“It got to the point where I couldn’t even cook meat in the house because Gracie would run upstairs, physically retching.”

Gracie had a Coronavirus swab test which came back negative.

But she later tested positive for Covid antibodies after being referred to hospital to see an ear, nose and throat specialist.

Says Claire: “Around late August, other symptoms appeared. 

“Gracie was constantly exhausted and sleeping for sixteen hours at a time. 

We were warned that if we couldn’t get any food in her she would have to be tube fed

Claire HayesGracie's mum

“She would complain she felt hot despite having her window open through the winter – her room felt like a fridge. 

“She was so weak, I had to borrow a wheelchair from the Red Cross to get her to hospital appointments.

“She was eating so little that her weight plummeted and we were warned that if we couldn’t get any food in her she would have to be tube fed.

“For months, the only things she could eat were fig rolls and custard, maybe the odd chip here and there. It was November before she could face a slice of bread.”

'Heartbreaking' agony

Gracie was diagnosed with Long Covid by a paediatric team at Wansbeck General Hospital in October.

“We’ve been told they don’t know enough about it to be able to treat it,” says Claire, also mum to Ryan, 24, and Dylan, seven.

“There are times when Gracie has been in absolute despair, sobbing and saying she doesn’t want to be here anymore.

“Before this, she had no underlying health problems and had barely been to a doctor in her life. 

“It’s heartbreaking. All we can do is wait and hope she gets better. 

“She is finally starting to eat again and even gained a little weight in the last couple of weeks, but meat is still off the menu.”

Over 3,600 children and young people under the age of 17 have been hospitalised overnight with Covid since March.

Government figures show an upward trend in admissions.

Fewer than 10 children a day needed overnight hospital care in August and September last year.

By December an average of 18 a day were being admitted to hospital. 

And by the first week of 2021 that number had increased to an average of 50 a day, with 79 on January 5th alone.

Many parents with Long Covid children complain they have faced disbelief from medical professionals.

Like Sammie, some adult Long Covid sufferers have been told their children must be mimicking their illness. 

Others say medics blame their kids’ symptoms on anxiety or depression.

'He was screaming in pain'

Nichola Careless’ 12-year-old son, Mani, has been using a wheelchair for the last four months while daughter Eleni, 13, has been suffering with brain fog, dizziness and headaches.

Mani was struck down with debilitating joint pain after recovering from a hacking, dry cough that lasted two weeks.

Now the previously sporty teenager – who played football and rugby for local teams – can’t take more than a few steps without being overwhelmed with exhaustion. 

His pain grew so severe he was hospitalised for three nights, but self-employed Nichola, 44, said: “We were told he was exaggerating his symptoms, that it was probably related to anxiety and he was making it all up.

“He was in agony, essentially paralysed from the neck down, yet I was treated like some neurotic mother. 

“I remember Mani looking at me, distraught, and saying ‘they don’t believe us, mum’.

“He was made to do physiotherapy which was like watching him being tortured – he was screaming in pain. 

“I even had the school attendance officer on the doorstep telling me Mani needed to get back to lessons – yet he was so poorly he couldn’t even lift his head.

“For a while we trusted the professionals and bought into what they were saying, we even arranged for some cognitive behavioural therapy (CBT) to treat Mani’s supposed ‘anxiety’.

“It was only when I began doing some online research and found the Long Covid Kids support group that I realised there were other parents going through the same experience. 

“It was such a relief to finally be believed.”

Doctor's plea for compassion

Paediatrician Dr Nigel Speight is an expert in child Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS).

He sees parallels between Long Covid and ME/CFS – also a post-viral condition which is possibly triggered by the body’s immune response.

Dr Speight said: “For many years, children and adults with ME have been subjected to disbelief by the medical profession. The same thing might be beginning to happen with Long Covid children.

“The medical profession would be sensible to accept Long Covid as a post-viral, ME-like illness, and treat it open mindedly, believe in it, and be supportive.

“Doctors don’t have too much to offer these children in terms of a cure, so the least they can do is support and protect them.”

Figures show that between just one and two per cent of Covid-19 cases worldwide occur in children. 

A study of 651 kids admitted to UK hospitals with Covid-19, published in the British Medical Journal in August, concluded that, in children, “severe disease was rare”.

But despite the government’s insistence that schools are safe, Sammie McFarland says official statistics neither reflect the true scale of Coronavirus in children, nor take into account its long term effects.

Government guidance tells people to get a Covid test if they have a new, continuous cough, high temperature or loss of taste and smell.

But Sammie says: “Often, children don’t have those symptoms at all, so parents don’t get them tested. 

“Weeks can pass before children develop complications. By that time, the acute stage of the virus has passed, so a test is meaningless.