Updated: Nov 19, 2020
For most of us who have been living with ongoing symptoms after contracting Covid in March, there have been moments of real despair at the uncertainty about what the future holds and the lack of medical support and treatments. For me, this despair was fourfold as my whole family – partner, self and two children – has not made a full recovery.
Each of us had our own idiosyncratic version of this virus, my son and partner had a dry cough, whilst my daughter and I had initial upper respiratory symptoms which soon developed into nausea and dizziness. My taste and smell went, and we both lost our appetites. A few weeks in, I briefly had bowel issues followed by an abdominal rash; my son developed a chicken pox lie rash and my daughter’s rashes looked like severe eczema. Although my son’s initial illness seemed to improve, he then went on to have various symptoms come and go and this is ongoing.
My daughter’s acute phase continued fairly consistently for six weeks, but she also complains daily of fatigue and nausea, and her appetite has not returned fully. My attempt to get her out of bed on week four for a walk resulted in a return to bed for another two weeks and a diet of complan milkshakes. Any mention of food even now can lead her to feel nauseous, so eating has become consistently problematic.
I have called the Doctors on a cyclical basis, according to which of us is most in need. Doctors and nurses were largely kind but not very helpful, unsurprisingly (with the exception of one, very unhelpful doctor). Their knowledge of this was behind my own as we collected the full complement of symptoms long before they were officially recognised. They offered antibiotics for the ‘possible UTI’ that my son experienced and the ear and throat pains of my daughter. The second round I refused, knowing that this was a virus and would not be helped with antibiotics.
Eventually, my daughter had bloods taken when she started saying that she couldn’t get enough air in and her legs were giving way; these came back with raised B12 and eosinophils. I pushed for a paediatrician to investigate and when we finally saw her, she attributed the ongoing symptoms to eczema, the antibiotics (from three months previously) and the B12 as one of life’s mysteries. I am currently waiting for a paediatrician appointment for my son in order to have his bloods taken.
From the early days of panic, when my children were acutely ill and I felt like I had no medical support
with GP surgeries closed and A&E largely inaccessible, I have had to learn to cope with the rollercoaster of symptoms. Some days we are all largely OK, but any exertion can lead to an upsurge in fatigue and malaise. I have since spoken to a large number of parents with long covid children, and we have shared our experiences of the daily difficulties of having children who are not their old selves, but also our fear and trepidation at what the future holds.
My concerns are twofold. Firstly, that our children are the invisible victims of this virus, being seen as asymptomatic and therefore not counted in the figures. This means that doctors and paediatricians do not recognise the long tail symptoms in our children and they are not getting tested or treated. My other concern is the return to schools; not only are children effective transmitters of the virus, but they are also affected by this.
As the long term impact of this virus becomes better understood, we are starting to realise that this is no flu-like respiratory virus but rather a multi-systemic attack on the whole body.
Hopefully, my family will not experience lifelong health repercussions from this, but we cannot say for sure. Until there is greater certainty on these issues, it is imperative that we do everything we can to prevent children from catching this virus.
Photo from summer 2020. , my son and partner had a dry cough, whilst my daughter and I had initial upper respiratory symptoms which soon developed into nausea and dizziness. My taste and smell went, and we both lost our appetites. A few weeks in, I briefly had bowel issues followed by an abdominal rash; my son developed a chickenpox lie rash and my daughter’s rashes looked like severe eczema. Although my son’s initial illness seemed to improve, he then went on to have various symptoms come and go and this is ongoing.
Frances Simpson is a lecturer in psychology and counselling at Coventry University (SC.) She is also a sufferer of long covid and a founder member of the campaign and support group LongCovidKids & campaign group LongCovidSOS
LongCovidKids.org is a parent and patient-led campaign & support group for parents of children with Long Covid. Our story started with a short film on long-lasting symptoms of Covid in children & are working on The Long Covid Kids Study with PeopleWith