Sasha
Sasha’s daughter has been extremely unwell with a range of symptoms, including chest pain, left arm weakness, extreme sensory sensitivity, a rash, brain fog, loss of taste and smell, and inability to eat. Sasha has been providing her daughter with 24-hour care for several months but is starting to see some signs of improvement in her health. Sasha was interviewed in April and May 2022.
Sasha’s daughter is 10. She caught Covid in October 2021. Sasha has two other younger children and lives with her husband. She describes her ethnicity as White.
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Sasha’s daughter caught Covid in October 2021, and then seemed to catch it again 10 days later. She initially had flu-like symptoms and severe stomach cramps. This was diagnosed as functional abdominal pain and Sasha’s daughter was referred to a pain clinic. Her symptoms developed to include chest pain, left arm weakness, extreme sensory sensitivity, a rash, brain fog, loss of taste and smell, and inability to eat. A test showed that she also had glandular fever. Sasha’s daughter has not been back to school and her quality of life has been really poor. She was spending time in a dark room, often crying and Sasha had to feed her high calorie drinks with a syringe. She needed help to walk and to go to the toilet and hadn’t been able to keep in touch with friends.
Sasha’s husband has been able to take time away from his business to take on more responsibilities at home and with caring for their younger boys. It has been distressing for the boys to see their sister unwell, and difficult for them to answer questions they have been asked at school about their sister’s health. They haven’t been able to have friends or over or go to clubs because of their sister’s illness. Sasha and her partner have had practical support from local parents, but friends and family find it difficult to understand their experiences. They have been more isolated socially as a result of their daughter’s illness. Sasha’s daughter only wanted Sasha when she was unwell, which was hard for her husband. He has been a huge support for Sasha, who recognises the experience would have been more depressing and lonely without his presence at home. There have been some improvements in her daughter’s health as she has started talking, drinking, eating, using her left arm, getting dressed, seeing a couple of friends, playing with her dad, wanting to go out, and looking at schoolwork. Sasha is hopeful this could be the start of her daughter’s recovery.
Sasha feels she has needed to fight every step of the way to get support and help for her daughter from healthcare professionals. It has been very stressful. Sasha felt she was not believed or was thought to be overreacting. Sasha’s daughter has had four hospital admissions. The second was better, with lots of tests conducted, but Sasha still feels care providers aren’t engaging fully with how serious her daughter’s condition is. A psychiatrist suggested a psychological element, which Sasha strongly disagrees with, and their advice was to ‘just get her going’ which Sasha feels didn’t help. Their GP has been a compassionate advocate and is open-minded to emerging research that Sasha has identified. They prescribed melatonin for sleep which didn’t help, and a short course of steroids that did. They have been supportive by making and chasing referrals to specialist Long Covid support. Sasha and her husband paid for medical second opinions and have used contacts outside the health service, including reaching international experts via social media. Social media has been vital for information and emotional support. Sasha feels the UK is behind other countries in their response to Long Covid. She is concerned about the divide she has seen in medicine between those who think conditions without obvious physical causes are psychological, and those who are open to considering the limitations of their tests.
Sasha thinks there needs to be treatment pathways for children with Long Covid. She would encourage others to keep seeking help from people with expertise in post-viral conditions, keep a symptoms diary to help remember, as the experience can be overwhelming, and to use social media to find reliable sources of information and support. She would encourage people to raise awareness via their Member of Parliament, and for schools to be more aware of what they can do to help pupils with Long Covid.
Sasha felt belittled and fobbed off by the medical profession over her daughter’s Long Covid.
Sasha felt belittled and fobbed off by the medical profession over her daughter’s Long Covid.
So, I think we’ve just felt rather belittled and fobbed off for the whole journey with a very, very sick child, and we’ve been given some diagnoses which have been sort of full stops, like functional pain, full stop. You know I’ve been... I managed to secure some contacts through people I know, doctors who have children with Long Covid, and those have been extremely supportive and they’re echoing things that we have said as well, and the Long Covid Kids has... this has given me more support than any conventional NHS pathways. So, it’s been really down to us to navigate her care in that way—
And that’s been the major stress: are we doing enough to nurse a sick child day and night? You know a sense of not being believed that she was ill, that I was being an over-reactive mother, that she wasn’t that sick, when she was, and she’s described as one of the most severe Long Covid cases by the doctors I’m speaking to who have Long Covid children, have acknowledged [incredulous laugh].
Sasha was pleased when her daughter’s Long Covid symptoms started to get better after a difficult few months.
Sasha was pleased when her daughter’s Long Covid symptoms started to get better after a difficult few months.
She has... you know, I think the first three months of this year her quality of life has been horrendous she’s not had any joy in her day. But the last couple of weeks I think... which is why I’m probably slightly chirpier today, we’ve seen a bit of an improvement. So, we’re absolutely thrilled. We’ve got an MDT (Multi-Disciplinary Team) meeting next week to try and plan a way forward with her recovery, which I feel now is possible. I feel she’s just slightly out of this kind of acute stage, I don’t know why, and I don’t think... but... so she’s started talking again, her brain fog has lifted, and she’s started just playing with her right hand in the bed and interacting for longer periods of time.
You know, before she had complete brain fog complete sound intolerance, you know, she was just so ill. You know, when people are that ill you do wonder about, like, just sedating them to try and bring them back, you... you know, the level of suffering she went through I think was extraordinary. She can’t wash, allodynia is awful, you know, it was just horrendous. Yeah, just a really sick child. And they just put her down to being awkward in the hospitals which was really hard to take because she’s not, she’s not an awkward child, she’s really lovely and she’s up laughing now a bit and talking again and you just think, ‘actually she was just really ill’ and they were keen to just say she was awkward, or I was awkward.
Sasha’s daughter has had a slow recovery, which has involved almost full-time care from Sasha.
Sasha’s daughter has had a slow recovery, which has involved almost full-time care from Sasha.
Yeah so I suppose that with [my daughter] there’s almost like two stages, when she was at her worst which was January, February, March, she was in bed all day, I had to syringe in Fortisip, I had to help her to the toilet, the room was dark she was crying all day, you know, I couldn’t leave her side because I was, she couldn’t move by herself so I just sat in a dark room with her. And my husband did everything else you know, so that, that was at it’s worst. And she would wake every two hours in the night so I would just read and research and sit with her and just kind of ride it out a bit. But now we’re in the recovery phase, we are suggesting things to help her get back into normal life so we’re not, we don’t really make her do anything because you can’t make anyone do anything but you kind of, we’re encouraging her to eat more and encouraging her to go outside and it’s a, it’s a really nice phase where we’re just building her back up.
So, we, her mobility has improved this week last week she was able to sit without help and this week she’s we’re still helping her walk, so again it’s, it’s quite the care burden is fairly high so one of us is always with her. And preparing all the food and getting her going supporting her with her school work and socially, hopefully, you know keeping her up beat with the challenges and trying to talk about things as they’re coming up in her mind, because she’s talking more about the future and things as well, so one of us is always there to sort of support her [laughs] in her recovery so we’re just lucky we can be flexible with what we’re doing and juggle it between us, but I think it would be really difficult if you were a single parent.
Sasha’s husband owned a business and was able to step back from work, allowing Sasha to care for their daughter while he cared for their sons.
Sasha’s husband owned a business and was able to step back from work, allowing Sasha to care for their daughter while he cared for their sons.
Yeah, so my husband has been amazing, he’s just been able to... he’s a [job title], so he has been able to delegate a bit, and he was half-managerial, so he’s been able to just look after my sons completely, because I can’t get [daughter] in the car and do the school run or go shopping, or do anything, you know? So, he’s just taken over their care 100%. Which I think he’s enjoyed bonding with them, but we’re very fortunate he was able to do that, and I really, you know, appreciate we’re in a privileged position and the majority of people I... I can’t... I dread to think how it would affect you know somebody who worked in a factory, and they were on a minimum wage, you know it’s just, yeah, really hard.
Our parents don’t help, they’re a bit old, but so they... you know, it’s just a different time in their lives, so it’s pretty much me and [husband]. We have had some friends helping after school and doing shared lifts and things as well, but he’s really just so lucky he’s been able to step away from work. He... he has to do some on-call and night work at the weekend, which was a bit tricky, but on the whole, he’s been around and really supportive. He’s done everything. He’s cooked, he’s cleaned, he’s... you know, he’s... he’s done everything I would do.
Sasha says that she felt no one wanted to acknowledge, engage with or take ownership of her child’s Long Covid. She says she felt “rather belittled and fobbed off for the whole journey.”
Sasha says that she felt no one wanted to acknowledge, engage with or take ownership of her child’s Long Covid. She says she felt “rather belittled and fobbed off for the whole journey.”
Okay, thank you [laughs]. Yeah, so I think the main stressor with the journey, was nobody wanted to acknowledge really, when we’d been into hospital, that Long Covid was a condition that they could engage with. So, my husband and I’m a radiographer and my husband’s a vet, we felt like we had to almost fight for every hospital appointment and every GP appointment, and just say, “My daughter’s still not well.” You know, I think nobody took ownership of her care until very late on in March when we saw a paediatrician in [town].
So, I think we’ve just felt rather belittled and fobbed off for the whole journey with a very, very sick child, and we’ve been given some diagnoses which have been sort of full stops, like functional pain, full stop. You know I’ve been...I managed to secure some contacts through people I know, doctors who have children with Long Covid, and those have been extremely supportive and they’re echoing things that we have said as well, and the Long Covid Kids support group has...this has given me more support than any conventional NHS pathways. So, it’s been really down to us to navigate her care in that way and that’s been the major stress: are we doing enough to nurse a sick child day and night? You know, a sense of not being believed that she was ill, that I was being an overreactive mother, that she wasn’t that sick, when she was [incredulous laugh]. And she’s described as one of the most severe Long Covid cases by the doctors I’m speaking to who have Long Covid children, have acknowledged, and she’s the first one in the [area] to be referred, from the paediatrician we’re seeing, to the Long Covid Hub in [city] and that pathway’s taken a long time...
Sasha’s daughter was not offered any follow up support after the Long Covid clinic appointment.
Sasha’s daughter was not offered any follow up support after the Long Covid clinic appointment.
Yes, yeah we did, it wasn’t overly useful, I think because she’d turned a corner it’s very much they wanted just to watch and wait rather than intervene with things that may do more damage than not. So, it they didn’t really offer up any follow-up support in terms of physio or occupational therapy, the cardiologist wasn’t at the meeting, the Long Covid hub meeting which they were meant to be, so we still haven’t really had an input on that. So, they said they’d get back to us, but they haven’t. So, we did see [name], our local MP, my husband had a meeting with him to discuss the lack of paediatric Long Covid pathways and the funding. And we did get a letter back from the [county] NHS Commissioning Authority saying that they haven’t got things right with [my daughter] and they were going to talk with NHS England on refining the pathways.
Sasha is worried about sending her daughter back to school after many months off with Long Covid symptoms and thinks there should be more attention paid to prevention, including better ventilation.
Sasha is worried about sending her daughter back to school after many months off with Long Covid symptoms and thinks there should be more attention paid to prevention, including better ventilation.
The other interesting thing that is coming out is, you know, the HEPA air filters for classrooms. Because I definitely feel that in the lack, you know, considering the lack of treatment once they have got Covid or Long Covid, there’s not much there, we have to focus on prevention in these two years before we get protocols and, you know, evidence-based medicine out there. So [cardiologist name]’s school has two HEPA filters per classroom, and they’ve had no major outbreaks of Covid since January, other people on Twitter have had 50% of the class off since January, you know, because they’re getting reinfected. So, I just think in my mind in an ideal world I would send [daughter] back to school with two air filters in her classroom. Especially going into the winter.
Sasha is unsure about allowing her daughter to be vaccinated. She’s concerned about the effect Covid has had on her immune system.
Sasha is unsure about allowing her daughter to be vaccinated. She’s concerned about the effect Covid has had on her immune system.
It is a worry. Because I think there are so many theories about what’s causing Long Covid but they don’t really know. But one of the most worrying one is kind of like T Cell Apoptosis, so the in fact that your immune system is almost depleted from having Covid which then means whatever else you get can take hold which I think is what happened with [my daughter], I think, so the EBV [Epstein Barr Virus] then really took hold, the glandular fever. So, anything I can do to prevent that again, you know, before she goes into this soup of microbes at school.
Sasha advised people to ‘contact your MP’ as a way to raise awareness of the number of young people with Long Covid and initiate change.
Sasha advised people to ‘contact your MP’ as a way to raise awareness of the number of young people with Long Covid and initiate change.
And apply pressure to the Government, definitely contact your MP, try and initiate change, I think if we don’t tell them how many children are being affected they’ll, they won’t know, if you just stay on Facebook I think you would never know I think probably it is useful to go to the newspapers.
Sasha’s daughter was gaining strength and seeing friends again.
Sasha’s daughter was gaining strength and seeing friends again.
I wondered if you would just be able to tell me how things have been, you mentioned in your e-mails that there’s sort of, [your daughter] was starting to show some signs of improvement when I spoke to you the last time but that that’s continued recently?
Yes we’ve been thrilled, yeah definitely she’s going from strength to strength so she’s stopped the Fortisip drinks that she was having and started eating again, yeah. Her mobility’s improved and she’s started to use her left arm which we were quite worried about, so…and she’s wanting to go out, she’s started to come in the bus, in the car to the bus stop. And she’s seen a couple of friends, she’s got dressed again so her skin problems are improving. Not, not entirely gone but all going in the right direction, so. She’s even started wanting to do a bit of schoolwork [laughs]. So we’re really, really pleased yeah, she’s at home, just building up her eating and her strength and then we’ve had a meeting with the school about a very gradual return which really just helps her socially reintegrate before we try and address what she may have missed.