Kids with Long Covid: 'I long for the day I have my pre-Covid children back'
One saving grace of the Covid-19 pandemic was that the virus didn’t seem too dangerous for the majority of healthy children.
Those who did contract it tended to have milder symptoms, or didn’t show symptoms at all.
However, despite avoiding hospitalisation or severe illness initially, many thousands of children now have Long Covid and have been suffering debilitating symptoms for weeks, months, even years.
Many of these children now can’t go to school or take their exams, they have been forced to stop playing with their friends or taking part in sport and hobbies. Once bubbly, vibrant personalities have been ravaged by exhaustion and anxiety.
Their parents are at breaking point, struggling to be heard, desperate to be believed, and having to fight for the bare minimum of support.
Here are some of their stories:
Binita is a consultant respiratory physician and has been working on the frontline of the pandemic since the start. Unfortunately, she is pretty certain she brought Covid home to her 10-year-old daughter Jasmin.
More than a year on, Jasmin still hasn’t recovered, and now she has had to stop going to school and needs a wheelchair to manage her extreme fatigue.
‘Life is unrecognisable to how it was before for Jasmin,’ Binita tells Metro.co.uk. ‘She was a very happy, healthy, normal child who enjoyed doing normal things, and now her life is severely restricted.
‘She can’t go to parties, she can’t go to school properly, she can’t join in with her friends. It has had a big impact on her on her mood. She as amazing and she has coped with it brilliantly well, but it would impact on anybody’s mood, and she has had really rough times and she has struggled.’
One big change is that Binita’s husband actually had to give up his job because Jasmin now needs a lot of care.
‘Having a sick child becomes a full-time job,’ she says. ‘So we are now one-income family. Thankfully, we are lucky enough to be able to cope with that. But there are many people who can’t. And this is something we’re not talking about.
‘Jasmin has a little sister and her world has been turned upside down as well. I’m sure it’s having an untold impact on her too.’
Jasmin, who is now 11, first became unwell in January 2021. She wasn’t particularly ill with the initial virus, but she just never seemed to recover. When she went back to school full-time she simply couldn’t keep up with the demand and would experience huge crashes of energy and seemed to be getting worse.
‘We didn’t really understand what it was,’ says Binita. ‘People weren’t talking about Long Covid in kids at that time. So even as a chest physician, I wasn’t thinking that was necessarily what it was.’
Then Jasmin took a turn for the worse over Easter and her parents managed to get her the medical assessment and made the difficult decision to take her out of school.
‘Since last April she has been dipping in and out of school for a maximum of one to two hours a day,’ says Binita. ‘She is severely fatigued to the point where she now has a wheelchair to manage any distance outdoors.
‘I have become a bit of a campaigner and a champion for kids because they don’t have a voice. And, even as a healthcare professional, I have found the entire system difficult to navigate.’
Now, after six months of tests, referrals and appointments, Binita says they still haven’t had anything meaningful in terms of treatment.
‘I’m really angry that some in the UK paediatric community have played down the risks of Long Covid in children. There are 15 Long Covid children’s clinics in England, but accessing them is not easy and there is huge demand. They are useful for ruling out other conditions, but without treatments families are just left to cope with advice about managing fatigue – what’s the point of that? We need proper biomedical research. Two years in and with so many kids sick, I can’t believe this isn’t happening.
‘We are still not protecting our children. They are still unvaccinated if they’re under 12, uptake has been very poor in older children. We have not put mitigations into schools.’
In terms of the picture going forward, Binita feels like children in the UK have been ‘hung out to dry’.
‘What really worries me is that we know this is a multi system, blood vessel disease that is causing significant damage to organs,’ she says. ‘And we’re allowing them to get repeatedly infected. We know that repeat infections are common in kids.
‘What is the long-term impact going to be? In 20 years will we look back at this period of time we will think – what on earth did we do this generation? That’s my fear. That we will have a wave of chronic disability, and we’ve allowed it to happen.’
Victoria and Steve Parish, have two sons Alexander,15 and Jacob, 11. They were an outoorsy family who loved nothing more than biking, climbing in the Lake District and Yorkshire – until Covid turned their world upside down.
‘Steve came home from work in March 2021 unwell – he tested positive for Covid. I tested positive around two weeks later. Jacob said he didn’t feel too good in between our positive tests, but we weren’t too concerned as Covid wasn’t affecting children, and Alex was okay.’
By the end of the month, Steve and Victoria were improving but they noticed their youngest Jacob wasn’t.
‘He was pale, not walking too well,’ recalls Victoria. ‘We would walk the dog and Jake couldn’t keep up with us. He was tired and dizzy and his legs hurt. The GP advised to let it run its course, as these things can take time.’
Jacob continued to deteriorate, he was coming downstairs on his bottom because he couldn’t manage walking, and he was too unwell for school.
‘He would wake up feeling unwell and would sit in bed or on the settee,’ says Victoria. ‘He was limp, pale faced, dark under his eyes, at around the six week mark he was crawling to get to the toilet rather than walking, I was having to help him or carry him at times.
‘He was suffering with chest pains, dizziness, woozy head, tingles in his hands and legs, leg pains, tiredness and headaches. Our GP advised to go to hospital to rule out Guillain Barre syndrome, Jacob still had reflexes this was ruled out.’
Now, one year on from initial infection, Jacob still has a lot of symptoms including some that developed as time went on.
‘He wakes up everyday feeling tired,’ says Victoria. ‘He can’t really do anything before 11am or he feels sick, has shortness of breath, headaches, and nausea. He has leg pain, weak knees, tight calves, dead legs that come and go.
‘Jacob hasn’t been able to weight bear since he started crawling last April.
‘He has also developed an upset tummy and bowls and he suffers with his bladder. These symptoms are random and come and go daily.’
Victoria and Steve bought a wheelchair so they could take Jacob out on walks with the dog. They also bought a disability walking aid, a toilet aid to help Jacob use the loo, and a bath seat. In terms of support, Victoria says they have had to fight for everything, from medical tests to occupational therapy to physio sessions.
‘We asked for occupational therapy in the summer last year, but we were declined as they saw no reason for it,’ she says. ‘Hence why we bought the mobility aids ourselves.
‘From a support from of view, we have had very little. We’ve felt completely alone in sourcing our son help to get better. The financial implications have been huge. In November, I secured Jacob Disability Living Allowance and in March this year I have secured carers allowance with my first payment.’
These issues are compounded by the fact that Victoria had to leave her job as an estate agent to care for her son full time.
‘It has changed our lives completely,’ says Victoria. ‘Our lives became a mix of constant worry, hospital appointments, dealing with results coming back normal, being told we have a fit and healthy boy – who was far from it.
‘We feel very let down by our local hospital, Jacob’s care, rehabilitation and health investigations. We have had to fight for absolutely everything. It’s emotionally and physically draining looking after, caring for and providing his rehabilitation.’
A year on, and Victoria says the family are working on acceptance of the situation, and taking comfort in the fact that Jacob’s recovery will take time and he is slowly getting stronger.
‘Jacob is now under a paediatrician neurologist in the private sector,’ she says. We had the first zoom appointment in March and she has confirmed he meets the symptom criteria for Long Covid including POTS like symptoms and FND.
‘The future is a concern, as is Jacob’s education – he’s currently only attending seven lessons a week if he’s well enough to attend.
‘I have my concerns about Jacob’s long-term health. Will all his symptoms ease? Is there something underlying that’s been triggered by Covid?’
Victoria has also worked all her life and is struggling with this big shift into the role of full-time carer.
‘I’ve always worked since college, I’m independent and like having my own income and financial security. I now rely on carer’s allowance, DLA and my husband to cover all the outgoings and our additional costs of Jacob’s rehabilitation.
‘We will pay whatever it takes, we’ve discussed long-term financial implications, remortgaging or downsizing. We can only take it one day at a time.’
Louise and Martin Whapshott are parents to two children – Corbin, 16 and Eva, 14 – both of whom have Long Covid, and now their futures are uncertain.
The family’s ordeal began in April 2020 when Martin and Louise caught Covid and were hit incredibly hard. Martin, who had previously had pneumonia, was hospitalised and Louise was off work for eight weeks with lingering symptoms and fatigue.
‘When I dropped my husband off at the hospital he told me he loved me, and how hoped to see me on the other side,’ Louise tells Metro.co.uk. ‘He added, “if not, I’ll see you in a body bag,” and the reality hit hard.’
Thankfully, Martin recovered and came home and the family, who live in Chawton, Hampshire, were thankful that the kids had seemingly remained healthy. However they would later discover that both children had caught the illness but had been asymptomatic.
‘In September 2020 Eva returned to school and after four days of being back she started to become very tired,’ recalls Louise.
‘Tests were carried out for various different health complaints which all came back clear, they ran tests to check Eva’s antibodies which showed positive – she was then diagnosed with Long Covid.
‘Eva was now sleeping from 9pm to sometimes 7pm the following day, I felt the need to regularly check she was still alive as she was in such a deep sleep. She lost over a stone during this time.’
The family visited the paediatrician who was honest and told them they just don’t know enough about Long Covid, and at the time there were no local support clinics for children.
‘We were referred to the fatigue clinic in Bath, this is where Eva was taught to pace herself and we were introduced to the spoons theory and the concept of “red and green” activities – planning your day so as not to use up too much of your energy allowance.
‘At Eva’s worst, she was only able to manage 900 steps, any more she would be so wiped out the following days, she managed to increase this to 1200 although this proved too much so reduced back down.’
Now, they live in a limbo of baby steps, with Eva making tiny amounts of progress while they all live in fear of a relapse. A family holiday to Cornwall showed promise as she was able to come out and walk the dog, and was able to wake up earlier – but then she was wiped out for three months when they got home.
At the same time, their eldest Corbin was also living with debilitating Long Covid symptoms, stomach aches, palpitations, headaches, loss of appetite, nausea, dizziness, brain fog, and many more. He has his GCSE’s this year and Louise is terrified he won’t be well on the day of his exam, which the school have told her will mean he simply won’t get a grade.
‘I long for the day I have my pre-Covid children back,’ says Louise.
‘I’m angry at the years it has robbed from my children, at a time when they should be care-free. I’m fearful for what the future holds, or that I’ve failed them somehow.
‘I’m worried what if I miss another health complaint and put it down to Long Covid? I’m exhausted from fighting to get people to believe the kids, to get the support they need, all while trying to work full-time and attend appointments.’
However, Louise is grateful that her family survived and says they have become closer since all this happened.
‘I’m immensely proud of my children and how positive they are today, even though they are still battling the effects of this awful disease,’ she says. ‘They have used their experience to help others – making a documentary and taking part in the vaccine trials.’
For parents who are struggling to know how to help their children, registered charity Long Covid Kids has lots of resources and advice available.
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