There is a lot of focus on avoiding COVID19, but what happens if your child test's positive?
What really happens if your child get's COVID-19?
The latest Government advice is that children are likely to become infected with coronavirus at roughly the same rate as adults, but the infection is 'usually mild'.
What does mild mean?
Long Covid Kids made this video when we formed in the Autumn, we wouldn't describe our experience as mild.
As our support group has grown, we have heard over 380 accounts from parents looking after children with Long Covid.
The World Health Organization says
"recent data suggests children under the age of 18 years represent about 8.5% of reported cases, with relatively few deaths compared to other age groups and usually mild disease"
"While we are still learning about how COVID-19 affects people, so far, data suggests that children under the age of 18 years have few deaths compared to other age groups and usually mild disease. However, cases of critical illness have been reported."
What happens after initial infection?
Is anyone asking that question?
The focus is always on the statistics BUT there aren't any statistics on children after initial infection.
That data isn't recorded.
Long Covid isn't recorded.
This remains an ongoing concern especially as this data directly effects how decisions in healthcare and education are made.
How are children cared for after initial COVID19 infection?
This varies around the Uk and from Doctor to Doctor. The majority of families in our group report a negative experience and face medical gaslighting.
Parents report;
Difficulties in accessing medical support
Medical gaslighting
Rude and dismissive Doctors
Fear
Some families that have felt supported, they are in the minority.
One parent from Nottinghamshire contacted us for support.
She started "I’m broken my heart and head are all over the place.
Although Jo is home from hospital our next move is unclear as they are still awaiting results from her last tests over Christmas.
They have asked us to do is to leave her be without any medication including over-the-counter as well as antibiotics which she has been taking since before Christmas..to see what her temperatures do next and let her deteriorate once again so they can conduct more tests.
They have missed opportunities to do the test that they now feel they need.
But what does upset me the most is this
I told her specialist that I was getting support form other parents with children of the same age as my daughter Jo whom also suffer the same symptoms.
The Doctor angrily replied “Beware of charlatans...these people will be proved wrong I can assure you” I could put on paper Jo is suffering from Long Covid symptoms and then wash my hands of her. But I haven’t"
It is clear the Doctor doesn't believe in Long Covid in children.
After the call ended I just sat for a moment and cried...cried for all the people that are trying to help their children and get their point across for recognition and treatment for him to just turn around and say that about them and their children including my daughter.
I am still so angry about what he said and the way he said it also very unsure on what to do next for the welfare her my daughter as we await to see what happens next you can share details and photographs if they help other families find the support they need"
Sadly, stories like these are becoming more common.
Medical gaslighting is distressing and unhelpful and must stop.
Long Covid is accepted in adults and in most cases adults are slowly being are able to access services.
Why should our children be treated differently?
Our children experience disbelief, negativity and are being denied the support they need. The NHS is opening Long Covid clinics across the country but will not be providing paediatric services.
Long Covid Kids are asking the government to create a clear awareness campaign to help us overcome the ongoing challenges our parents face , document the existence of children with long lasting COVID19 symptoms, and to help control the spread of COVID19 in children.
If your child experiences any symptom of unwell, it COULD be Covid-19, and your child should be tested. Please see our frequently asked questions page for more info.
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 & we are working on The Long Covid Kids Study with PeopleWith