Jana and her husband have two sons and a daughter; their elder son is doing GCSEs and their daughter her AS Levels. All three children caught Covid in September 2021, but her husband did not get sick. After recovery, all three children went back to school, but their youngest son Samir started getting fevers, aches, and really bad nasal congestion which left him struggling to breathe at night. He would go back to school for a week or so and then come down with the same symptoms again. Their son’s condition has worsened since; he no longer attends school, is now using a wheelchair, and is sleeping downstairs. Jana was interviewed in May 2022.

Jana and her husband initially assumed their son was just catching another virus each time he went back to school, but by November, when their son was still suffering extremely high fevers, they asked the GP to do a blood test. Because their son was under 12 at the time, it took around six weeks to get a blood test, and the GP insisted they would not see their son until the blood test had been done.

A blood test was finally done, as well as chest X-Rays, which came back normal. Later on in January when their son was still suffering high fever, a pediatrician from the HOT clinic was consulted, but Jana explains that he only offered them vitamin D and told them that “there is nothing else and he should be fine to go back to school.”

By that time, their son’s attendance at school was low and the school had become worried. Jana says that all she could tell the school prior to this was that her son was suffering “really bad cold symptoms.”

Jana says that they then managed to get their son back in to school for two full days before half term, but a few days afterwards he “completely crashed out” and was so tired “he couldn’t get up at all from bed.” She and her husband then went back to the paediatrician and requested something in writing because, “he can’t be full time at school because this is just not good for him.” The paediatrician gave them a note and also referred their son to the Long Covid clinic. They were informed by the paediatrician that there was no separate Long Covid clinic for children; this was their first case of Long Covid and Jana says she could tell that they had, “no experience with that at all.”

While waiting for the appointment with Long Covid clinic, his condition worsened, leading to him having a reduced timetable at school and needing to be driven to school by car. By early March he developed suspected costochondritis, which was extremely painful, and he “was in bed for five weeks nonstop.” The GP told them that they cannot do home visits. The paediatrician told Jana, “If you are concerned about it, then go to A&E.” Jana says that it “was just hell.”

One day an ambulance had to be called. Jana and her husband also took their son to A&E after his oxygen levels dropped after standing up. They were told that their son’s vitals were fine and that “he needs to run around more and get more strength and energy.” They then took him back to A&E for a second time because he was in so much pain. He was suspected to have costochondritis, and was also prescribed omeprazole for constant burping, which only seemed to make it even worse. They then had a video call with a GP, where their son found it too painful to stand up and was screaming, resulting in the consultant concluding that “there’s nothing wrong physical…it’s all psychological.” Jana says that she felt gaslighted. When—after two weeks of taking the omeprazole—the symptoms did not improve, the GP advised them over the phone just to continue with more omeprazole.

It took two months for their son to be seen by the Long Covid clinic, and by that time his costochondritis symptoms had improved. Jana recalls that the first thing the doctors did there was stop the omeprazole and start him on melatonin for sleep, which helped get their son back to a normal sleep routine. Jana says that he now is taking paracetamol for pain relief, melatonin, antihistamines and vitamin D, and “that’s all is happening.” She feels the doctors are treating the symptoms but “not the root cause.” Contact with medical professionals and the GP has been a real struggle.

At the time of interview, Samir is still using the wheelchair. He cannot walk by himself at all, and his bed has been moved downstairs. He is intolerant to noises as they cause him discomfort. Hygiene is a big problem, says Jana; they tried giving their son a bath, but he found it too painful and was also unable to get up. They are currently waiting for occupational health to come out and assess the situation.

Jana doesn’t feel they have been treated differently “just because we are non-British.” She also feels lucky to be in a supportive Facebook group, Long Covid Kids, and says that now it is “all down to us researching and asking other parents, you know?” Her husband is currently not working because their son needs constant care at home. Neither Jana nor her husband have any other family members living in the UK; they are all back in Slovakia and Algeria, and there is limited contact, so they are very much on their own regarding family support. There is a family wedding in Slovakia this year; the older children are going, but Jana and her husband will stay at home because their youngest son is too ill to travel. Family activities such as swimming and cycling have also stopped, as well as religious celebrations like Eid, because their son is unable to go out or participate in them.

Jana explains that their son has not had a Covid vaccine, because he was too young for one initially, and now they feel uncertain as to whether it would make his condition worse – “We are not vaccinating him until we feel confident…it won’t affect him basically.” She also mentions they are following the current research about micro clots and treatments of Long Covid abroad, saying “you know you would do anything to make things better.”

Jana said she understood why her son’s school needed a written explanation for his absences from a healthcare professional.

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Jana had to coordinate her 12-year-old son Samir’s appointments and referrals herself, with little progress from the hospitals.

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Jana is considering going to Germany with her son for treatment. She doesn’t understand why she can’t get it in the UK and is worried about the logistics of travelling.

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Jana didn’t want to take one of her children out for Eid celebrations when Samir couldn’t attend.

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Jana’s husband lost his catering job during the pandemic. He needed to stay at home caring for their son who had Long Covid and Jana needed to work. Being migrants to the UK, they had no support from extended family.

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Jana recognised her son’s symptoms after reading about it on a Long Covid Facebook group.

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Jana’s son Samir is using a wheelchair and has moved to sleep in the living room downstairs where he can get to a bathroom on his own. She hopes an occupational therapist might suggest ways of adapting their home.

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