Gracie
In July 2020, Gracie developed smell and taste changes. She went on to develop many more debilitating symptoms over the next few months and has been diagnosed with PoTS (Postural Tachycardia Syndrome -an abnormal increase in heart rate that occurs after sitting up or standing). Gracie was unable to return to school for most of Year 6 and is now only attending school for a few hours a day when well enough. Gracie was interviewed in March 2021 with her mother, Claire.
Gracie is 11 and lives with her mum and dad, older brother (aged 25) and younger brother (aged 9). Ethnicity: White British.
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Before having Covid, Gracie was never sick and was a happy, healthy 10-year-old. She wasn’t ill with Covid, but in July 2020 a change in smell and taste alerted her to having Covid. This change in her senses lead to weight loss as she had trouble eating anything as it all smelt or tasted unpleasant.
Other symptoms followed in the next months including unexplained bruising, bad eczema, fatigue, sleep problems, bone pain, brain fog, and headaches. Returning to school in September was very challenging and soon Gracie was too fatigued to go to school. She was referred in October by her GP to a community paediatrician – “She was really good because when I went to see her, as soon as we saw her, she was like, ‘That’s long Covid,’ and, you know, so that can, takes quite a while, but it was really quick and I’m very thankful.” But Gracie’s mum didn’t feel they were doing enough so pushed for more specialist appointments to deal with Gracie’s symptoms. She saw ENT (Ears, Nose and Throat) specialists to check on her continuing change of taste and smell; a dietician to help with her eating problems; and a dermatologist for her skin problems.
In October 2020, Gracie started to develop symptoms of PoTS (Postural Tachycardia Syndrome) which caused dizziness when standing and a sudden high heartrate, as well as made Gracie faint, but although Gracie had an MRI, it took 7 to 8 months of her mum pushing for a referral before they saw a cardiologist who diagnosed PoTS.
In November, Gracie developed more symptoms: rashes, hair loss, and problems controlling her temperature. Further symptoms developed in December and January including tinnitus, Covid toe, bone popping (her rib popped out on Christmas Eve), iron deficiency, OCD behaviours, motor ticks (previously very minor but became severe and she has now been diagnosed with Tourette’s) and ADHD symptoms, where she is restless all the time and can’t follow a conversation.
Although there is no Long Covid clinic for children in their area, they feel they have had good support from medical professionals, especially their GP and clinical psychologist, but find the lack of treatments available frustrating. Gracie’s mum, Claire, feels that medical care has been down to her persistence, never giving up, and doing her own research. She says, “Every time you went you would get told, ‘We don’t know enough about it,’ and I mean that’s still ongoing now, nearly two years, two years in, but as time’s gone on and I’ve done my own research and I’ve been able to go back to her and say, ‘Right, this is what I think,’ then she has listened.” She likes their GP and feels they have a really good relationship with her, saying, “She’s the only one that’s ever taken time to ask how I am.”
Claire kept a timeline of Gracie’s symptoms, and although some symptoms have been remitting and relapsing, her mum says, “When you look back, it’s horrific.” Gracie didn’t go to school for most of Year 6, and even now has only returned to school for a couple of hours a day, which she still finds exhausting. Gracie was scared she’d lose her friends, as some have had difficulty understanding her Long Covid symptoms, “But I do have good friends and some of them understand.” Gracie sees her clinical psychologist every two weeks and says, “She’s helped so much” and keeps her chilled, especially in helping accept the current level of her recovery, which she described: “I think we’ve kind of plateaued, I think this is what I think is as good it’s going to get.” There have been no massive improvements to Gracie’s symptoms, and they are just trying to find ways to accept it. Claire says, “You feel hopeless that you've had a child that was the life and soul of the party. She was in a running club…Yeah [laughs]. To now, she still a lot of the time now, finds it a struggle to get out of bed.” The “worst” and most limiting symptoms Gracie has are still her PoTS symptoms: dizziness, fainting, and fatigue.
Gracie’s illness has affected the whole family, especially her younger brother. Claire says, “He likes Gracie to be there if we’re doing something, but Gracie a lot of the time can’t be there and it’s, he’s had to not do things because Gracie’s having a really bad time.” He tries to understand but finds it difficult. Claire was a newly qualified social worker and just about to start work when Gracie became ill and now has become Gracie’s full-time carer, saying “I mean even on the days that she can get in, into school, them few hours, it inevitably she’s there an hour and the phone goes, she’s fainted. Can I come and pick her up? So, you can’t go anywhere, you can’t commit to anything.” They live day to day as “planning things is just, it’s pointless, absolutely pointless,” but she does worry about when she will be able to go back to full-time work and help financially.
Gracie describes her Long Covid as, “So you know when you're in maze and like you turn around the corner and like, ‘Oh, this is going to be the end,’ but it’s just a dead-end: that’s what it feels like.”
Gracie described PoTS, where you experience an increase in heartrate when you stand up. This caused headaches and fainting.
Gracie described PoTS, where you experience an increase in heartrate when you stand up. This caused headaches and fainting.
Oh, yeah, OK, so I dev-, I’ve developed this thing called PoTS: postural tachycardia syndrome, so when everyone else stands up, doesn't their blood go to their head? But when I stand up it goes to my feet and it causes blood cooling in my feet, my stomach, my hands; I get bad headaches; it causes to faint; like and then my heartrate goes up really high: once, I’ve had it up to 200, that was bad, I know.
Yeah, that is bad.
And then my average heartrate it’s like in the 70s, isn’t it? 70s, 80s, but then when I stand up it’s like shoots like up, it’s really scary, and sometimes when I get up in the morning I stand up and I have to catch myself because I’m about to faint.
Gracie had times when she was so hot, she felt like she was ‘out in the desert’.
Gracie had times when she was so hot, she felt like she was ‘out in the desert’.
That was, that’s a big thing, that I couldn't control my temperature. Like, I just felt like I was heated inside. Like, you know, when you're out in the desert, but it was everywhere and I was, I was literally like throw myself around because I was so warm: I had the windows open, I had this big fan because I wasn’t like I wonder what was wrong.
A clinical psychologist contacted Gracie’s school to arrange for her to reduce to half-days at school. Her attendance at school was down to 23%. She felt stressed and sometimes felt she was behind everyone else.
A clinical psychologist contacted Gracie’s school to arrange for her to reduce to half-days at school. Her attendance at school was down to 23%. She felt stressed and sometimes felt she was behind everyone else.
Gracie: Yeah, school...
Interviewer: Were they supportive of that?
Mum: Yeah, do you want to say.
Gracie: OK, what’s [psychologist] called again? All right, so since I go and see [psychologist], my clinical psychologist, quite a lot, she’s the person that gets in touch with everybody in because like, ‘Right, we need this plan,’ like she’s good at doing stuff to do with school, and so I kind of said to her, ‘look, like, I’m really struggling in school like, it’s hard because like, you know.’
Mum: We did Zoom meetings, didn’t we?
Gracie: Yeah, we did Zoom meetings and she was like, ‘Right, I’m gonna sort this out for you,’ but like you can do it but for…so...
Mum: Yeah.
Gracie: Yeah.
Mum: Yeah, we’ll have regular meetings online meetings with [psychologist] and Gracie’s special educational needs teacher now—
Gracie: Yeah, that’s what I’m trying to say.
Mum: And just to be fair, they’ve been really good, she just kind of comes and goes to school as she pleases, but bear in mind, what’s your attendance?
Gracie: 23%—
Mum: 23%, and a lot of that’s-, actually it’s probably wrong because there’s a lot of doctor’s appoint-. hospital appointments, she cannot go to school saying that, do a hospital appointment in the morning and then go to school in the afternoon because it’s too much, it’s either one or the, one or the other, and you have a good run of a couple of days at school, a couple of afternoons at school, and then it’s a couple of afternoons and she can’t that that she can’t go in. I mean the only fault that I would say for school is, and it’s really awkward for them, is she’s had no nothing in terms of support at home with regards to work. And understand that that’s hard because how can you send her in when she’s so fatigued? But a lot of the fatigue is just to do, it’s, your brain can be quite slow, but if you could do work at, at home, I mean Gracie can’t do online—
Gracie: And my eyes aren’t sore, they’re literally —
Mum: Yeah, you can’t do online learning, it doesn't, it just doesn't work for her—
Gracie: It makes, it makes us stressed and I have a timeout pass and sometimes I have to go to the toilet and just cool-down because I get stressed because everyone else is working and you're like looking round and you're like, ‘what, I don’t understand what is happening,’ and I feel like I get on people’s nerves a bit because when I sit next to them I’m like, “What,” and like, ‘Well, you probably missed that,’ but I like I can’t, and I don’t understand what they’re talking about. I’d understand better if they’d send us work home.
Gracie’s mother Claire said that they have a ‘fantastic’ GP, who was the only professional who checked in on how she was managing, as the mother of a teenager with Long Covid.
Gracie’s mother Claire said that they have a ‘fantastic’ GP, who was the only professional who checked in on how she was managing, as the mother of a teenager with Long Covid.
Gracie: [GP] is massive. Basically she does my blood, doesn't she? That’s how I found out I had my iron thing, the iron thing.
Mum: Yeah.
Gracie: The iron, and what else does she—?
Mum: Well, she just...
Gracie: She measures me.
Mum: She’s the one who originally referred, we’re into community paediatricians, but yes, so I was seen there and everywhere else but for everything to do with it that’s not anything that comes under them umbrellas, if you like, she’s just—
Gracie: [mm]
Mum: —she’s just really, really good. We’ve got a really good relationship with her. We can ring her up for anything and she always is at the end of the phone, isn’t she?
Gracie: Yeah.
Mum: Yeah. Yeah, she’s, I mean, you know, she’s seen me at my worst. She’s, you know, she’s seen me in floods of tears when you just get so frustrated...
Gracie: So has [psychologist], she’s seen me cry.
Mum: Yeah.
Gracie: And I hold it together really well and then I just roar, because I hate to talk about me all the time—well, I don’t really hate to, but it just makes you, makes you upset because you won’t settle.
Mum: But no she’ll, so she’s been absolutely fantastic, we couldn't have asked for better really.
Gracie: Yeah.
Mum: We’ve been very, very lucky having her.
…yeah, always been believed right from the outset which was the best thing. And yeah, she just listens. I think it’s having somebody to listen to how you know Gracie is, how I’m feeling, and to be fair, out all of these professionals that we’ve seen, she’s the only one that’s ever taken time to ask how I am, which I think’s—
Gracie: Yeah.
Mum: —an absolute, I just, I think people are missing, they’re missing so much when they’re just concentrating on the child, I think they need to look at that, about the family as a whole, and see how everybody else is doing, and I think that’s one area that the NHS really, really, really, really lacks in. Yeah, and I think I find it strange coming from a social work aspect and that’s all you do, that that that crossover would be really, really helpful, you know?
Gracie and her mum found it hard to think how she had been before she was ill. Gracie’s mum said, “every day’s like Groundhog Day.”
Gracie and her mum found it hard to think how she had been before she was ill. Gracie’s mum said, “every day’s like Groundhog Day.”
Mum: “I think we’ve kind of plateaued, I think this is what I think is as good it’s going to get,” and she kind of agreed with us in a way because we haven't seen any kind of like massive improvement, and so is it easier to kind of just accept this is as good as it’s going to be and you've lost, well, we’ve never lost you but that vibrant girl. And this is what and you, but then you think, ‘No, you can’t give up, you can’t give up, there’s got to be something, is it going to be too late to get her back to baseline?’ It’s heartbreaking, isn’t it really? It’s quite upsetting talking about it and looking back through all the notes that we’ve got—
Gracie: It makes us upset seeing that old self, and when I see photos of me in the summer around that time, it’s sad because it’s just when it’s about to happen, literally like—
Mum: Yeah.
…Seeing her go through so, so much in—from that very beginning to thinking...or struggling to get her things to eat was an absolute…it was awful, seeing her crying because she couldn't eat the things she used to eat and then you would get a couple of foods that she could eat, but then the weight’s fallen off her, and then it goes from that to this the fatigue, and this little girl who—
Gracie: I used to do cartwheels.
Mum: Yeah, like the life’s been sucked out of her, and then everything else happening after that, and then it’s like every day’s like Groundhog Day, there’s no like—
Gracie: What’s that?
Mum: Every day’s the same.
Gracie: Okay.
Mum: There’s no, you know, improvement when you’re seeing a glimmer of her being able to be that child she once was, and it just, it just, it breaks your heart.
Gracie: Literally, when I do be the child I once was, the next day, I’m flat out, you know?
Mum: Yeah.
Gracie: I like swings though because, and you can sit like and have fun.
Mum: Yeah.
Gracie: [uh-huh]
Mum: It’s hard, yeah, and it’s that not knowing, not knowing, is she ever going to be back to the way that that she was? Yeah.
Gracie’s mother appreciated it when a healthcare professional believed her daughter’s experience of symptoms and also recognised that it was hard having a family member with Long Covid.
Gracie’s mother appreciated it when a healthcare professional believed her daughter’s experience of symptoms and also recognised that it was hard having a family member with Long Covid.
Mum: Yeah, always been believed right from the outset which was the best thing and yeah, she just, she just listens. I think it’s having somebody to listen to how you know Gracie is, how I’m feeling, and to be fair, out all of these professionals that we’ve seen, she’s the only one that’s ever taken time to ask how I am, which I think’s—
Gracie: Yeah.
Mum: An absolute, I just, I think people are missing, they’re missing so much when they’re just concentrating on the child, I think they need to look at that, about the, the family as a whole and see how everybody else is doing, and I think that’s one area that the NHS really, really, really, really lacks in. Yeah, and I think I find it strange coming from a social work aspect and that’s all you do, that that that crossover would be really, really helpful, you know?