Updated: Nov 22, 2020
Having a sick child with ongoing symptoms from a virus that nobody knows anything about, puts a fire in your belly.
Parent's want to seek medical support, and help their child, but what if their are barriers?
Parents from the Long Covid Kids parent support group regularly experience gas lighting from their primary care providers, this needs talking about.
"I feel disbelieved and am worried what the Doctor thinks about me"
" the nurse said our daughter is copying my symptoms"
"he has ongoing symptoms but I don't feel I can tak him back in case they think I have Munchausen's Syndrome"
"I was told I was over reacting and anxious"
"I can't talk about her symptoms with my partner because he doesn't believe her symptoms are from her orignal infection"
"my GP is getting cross with me and says that his symptoms are unrelated"
"friends think I am fussing, and think I am making it up"
The danger of gas lighting is that it can become a barrier to accessing medical support with underlying conditions left undected.
Information shared within the App is anonymously collated as intelligence that is studied by data analysts and Doctors. This intelligence is then used to make helpful recommendations for children with the exact same health profile as your child. Health profiles are based on age, ethnic background, weight, height, etc
The recent NICE guidelines are using post-Covid-19 -Syndrome to describe Long Covid. This is a term that many people with Long Covid, Longhaulers (and peope with Long Covid call themselves), are frustrated with. They feel it doesn't describe the condition.
Parents talk, they share their experiences and seek support on social media within groups like Long Covid Kids - Parents Support Group , Long Covid Support , Covid Uk & Ireland Sufferer & Survivor Support
Peer to peer support has real value and should be encouraged. Bad news spreads fast and gas lighting is a hot topic of concern with more and more parents becoming aware of this disgraceful and concernng practice making them nervous to seeking medical support.
Of course, not all symptoms that a child presents with will be from Long Covid, but how will we know if children are not taken to see their Doctor?
We need to build bridges and support parents. Parent's need to feel comfortable about taking their child to their Doctor. Long Covid is a mutisytemic condition with many sypmtoms. that may or maynot also be symptoms of another condition. No Symptom can be ignored.
Our Study helps parents & supports the medical community.
The Long Covid Kids Study with PeopleWith launched on Friday the 13th of November and hopes to help build a bridge between parents and the medical community while gaining intellegence that will be useful now and in the future. It offers much more than traditional research methods.
Parents tell us it can be exhausting to have to keep repeating the same information in different appointments, and as symptoms of Long Covid can come and go, it can be hard to keep track. The PeopleWith App makes life easier and enables a faster transfer of information.
The App is a user-friendly and enables parents to log their child's symptoms, medications, and lifestyle using a simple slider where symptoms can be graded in severity. Parents using the app are able to email reports of symptoms directly to their Doctor to alert them to any change and seek appropriate medical advie.
Information shared within the App is anonymously collated as intelligence that is studied by data anlyasts and Doctors. This intelligence is then used to make helpful recommendations for children with the exact same health profile as your child. Health profiles are based on age, ethnic background, weight, height, etc
To enable any advance in understanding Long Covid, Doctors need to see children with ongoing symptoms after an initial Coronavirus infection, no matter how mild, regardless of the child received a positive test or not.
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