The last day of our campervan holiday started much like all the others, with a lazy lay in watching the clouds and listening to the birds at the side of a body of water, this time, Wasst Water, Cumbria. Over the last 3 weeks we had been touring the Hebridean Islands, wild swimming and enjoying living of grid as much as possible. It was bliss.
We were all up and dressed in swimwear ready to go for a morning dip. I remember we were laughing at Kitty's request for KFC to MacDonalds once we hit civilisation and she mentioned her side was sore. We teased her that her tummy was grumbling at the thought of fast food. She laughed, but it didn't last long, and she was soon doubled over in pain, the colour draining from her cheeks. She said, "it really hurts now" and then started wincing and breathing quickly. It eased off a little, and she went into the toilet. It wasn't long before she opened the door and complained there "wasn't any air" and that it was "stuffy". This also passed and she closed the door again.
Just moments after her body fell sideways through the door, and she came crashing out, and slumped to the floor sitting her head on the cooker on the way down. It took me less than a split second to realise she was unconscious. Kitty lost consciousness 3 times in 10 minutes, each time blacking out for around a minute. We managed to get her out of the campervan and lay her on a blanket outside, her Dad put pillows under her feet and she lay there exhausted complaining of feeling hot. She felt clammy. Sudden pain and blacking out were new symptoms so we rang 999. It was so stressful as we couldn't get signal, but a man with a Kyack kindly lent us his phone and mentioned he had got signal on the ridge.
While we waited for the ambulance we gave her a Lateral Flow Test, checked her temperature, O2 and Bp all of which seemed normal. Having a child with Long Covid means we travel prepared! An hour later the Ambulance arrived
Kitty was discharged yesterday late afternoon and feels as fine as she has previously with LC, apart from a sore nose which she must have bashed on the way down.
The staff were kind but they don’t have any answers. All her tests were clear/normal.
This is common in Long Covid as they don’t know what to test for & are ruling other things out. We need the researchers to come up with that vital piece of the jigsaw.
It’s utterly exhausting trying to convince a DR that there is something wrong with your child when tests show nothing. They are so used to finding clues to help their diagnosis.
So despite the fact we were relaxed on holiday looking at a lake, only just got up and sitting laughing about Kitty’s craving KFC ....the DR thinks the sudden severe abdominal pain was anxiety.
He thought I seemed anxious because I challenged the diagnosis of anxiety and had asked if he had a theory for her blacking out 3 times. I’m concerned obviously, but what he read as anxiety was frustration.
I keep up with the research, and I read everything I can about LC & it was still hard to be heard and the efforts have left me exhausted.
Long haulers report that anxiety is the blanket diagnosis given when DRs don’t know what else it can be.
Why can’t they just say, we don’t know ?
We parted with the agreement that he felt he had been as thorough as he thought he could be and that I was ‘disappointed’.
Our discharge letter interestingly didn’t mention anxiety, and he had made further recommendations for testing once we are home.
Why am I sharing this ?
Because our experience is representative of so many of the families from our group.
Getting fobbed off is so often the experience, appointments are disappointing and admissions are a battle and we still don’t know which kids that get COVID will get LC. It’s Russian roulette. Severity of infection does not determine length of recovery.
Support is minimal. Understanding is rare. There is no cure. Prevention is all we have as defence. Natural immunity is evidenced to sadly wane. Vaccination doesn’t prevent infection or LC but does reduce severity of infection.
Our beautiful daughter is 16 mths post infection. She was only just back to doing 4 hrs daily at school without relapse. Before this episode we all thought she had been making good progress and was coming out the other side but now we have been reminded that there is still so much to learn about Long Covid.
Keep your babies safe & campaign for prevention in your schools.