A support group for parents of children with long Covid has been set up online.

The group is the extension of an existing UK charity called Long Covid Kids which connects and supports parents and caregivers of children and young people living with the post-viral illness.

Cat Haxby is the lead representative for the Isle of Man and mum to a child with Long Covid.

She said: ’Long Covid is something that’s happening and we can’t ignore it. It’s frightening how it’s affecting children in so many different ways.’

The 41-year-old contacted the chief executive officer and founder of the charity earlier this month and asked to set up a group in the island after her own daughter, eight-year-old Gabi Haxby, developed long Covid after suffering with the virus in March.

She said: ’I became a member of their Facebook group a few months back after Gabi had been admitted to Noble’s and I was just searching endlessly for information on long Covid.

’I started following their support group on Facebook and found it really helpful. I think it’s reassuring to know you’re not alone and you’re not imagining it because it’s obviously very new to doctors and families with all the symptoms.’

Mrs Haxby added: ’Back in June we put her up to bed one night and she had really bad pains in her tummy, we had taken her to the doctor. We thought "there’s something not right here".

’That night her legs just gave way, she lost all use of her legs, so she couldn’t stand up. We rushed her to A&E where she was admitted and there was mention from the pediatrician of long Covid but all her stats and X-rays were normal.

pain

’Her chest pains are waking her up in the night and she can’t quite catch her breath the same.’

The mother-of-four from Onchan explained why she felt it was important to have a support group in the Isle of Man, saying: ’You just feel like you’re hitting a brick wall sometimes. It’s so frustrating because as a parent your job is to protect your children and make sure they’re safe and when there’s no answers and you’re being sent home you feel like a hypochondriac.

’My aim on the island was to show support for other families that share in our story.

’It’s just to reach out for the parents and so everyone can share their stories. Some people might have ways of helping other children which no one else has heard of.’

A recent study in the UK has shown one in seven young people who catch the virus may still have symptoms 15 weeks later - there are currently no figures for the Isle of Man.

Mrs Haxby continued: ’My main thing is to support families but also try and get a support system - obviously it’s hard for GPs because they’re still learning but just to provide awareness to GPs and schools that there is support out there if they need it.

’We’ve had Manx Care confirm that our symptom poster, which launched last week, will be put in the children’s ward and they will ask GPs to post it up in their surgeries as well.

’It shows the common long Covid symptoms.’

The reaction to the new group from the public has been ’very positive’.

Mrs Haxby added: ’We officially launched on November 15 and I’ve had to recruit my friend, Bethan Sherwin, to help me out with it all.

’We have had quite a few responses from parents thanking us and saying there is a need for it in the island.’

You can find the group on Facebook under ’Long Covid Kids Isle of Man’ which is a part of longcovidkids.org.