Long covid changed my son from a high-energy 8-year-old to being too exhausted to play

Paul O'Connell and his son Jake, 8, who has Long COVID, suffers with pain, exhaustion and brainfog. Jake has been diagnosed with Paediatric Acute-onset Neuropsychiatric Syndrome, PANS, which was triggered by the COVID virus and further complicates his recovery. Photograph: Moya Nolan

Before covid, life was ‘normal’ for us all, for Paul O’Connell and his family, it changed dramatically during covid, particularly for his eight-year-old son. Jake suffers with long covid symptoms including PANS (Paediatric Acute-onset Neuropsychiatric Syndrome). Jake has contracted covid three times.

Within two years, Jake went from being a typical high-energy boy who loved the parks, swings, and playing frisbee with his friends to being completely exhausted and unable for playgrounds and going out with his friends. 

Paul says, “He still wants to do all of these things but he will crash spectacularly after them. If he wants to go to the park with his pals after school, we have to limit the time he spends with them. It all has to be managed now; how much he engages in physical play, the length of a walk in the park, screen time, social time, etc.” 

With PANS for Jake, it brings out behavioural symptoms including separation anxiety, some obsessive-compulsive tendencies (OCD), mood swings, and extreme difficulty regulating emotions which cause meltdowns where he cannot calm down.

Jake’s mother Sarah explains “With long covid, people often experience brain fog, muscle weakness, and profound exhaustion. Many children with PANS and LC also experience problems with their diet, where the foods they now eat have changed from an alteration in their palette. Another effect for Jake from long covid was a diagnosis of the onset of coeliac disease in 2022.” 

They spent several months going back and forth to various doctors. 

Sarah says, “Many people we saw seemed to believe Jake’s symptoms were most likely psychological and that he would benefit from socialising, fresh air, and exercise. There was also a view that the pandemic had unsettled many children.” 

The diagnosis of PANS came from a private trip to London after vast research from Sarah. The London specialist, an immunologist with an expert interest in PANS, did numerous blood tests and they got a confirmed diagnosis of PANS, coeliac disease with suspected general long covid. 

Paul said, “The London consultant visit took its toll on Jake. He couldn’t keep up with the pace, he found the underground, the plane, and the traveling, in general, was all too much.” 

It was also suggested to Paul and Sarah that there could be a sign of autism and they should organise an autism assessment for Jake. All this was ruled out after the consultant appointment in London who explained many children with PANS receive an incorrect diagnosis of autism.

Paul O'Connell and his son Jake, 8.

Sarah also works for the UK charity long covid Kids and is the lead representative for the Republic of Ireland. Sarah shares “I support other parents who have children with LC and also advocate for awareness and services for children with long covid in Ireland. I also came together with a group of adults with long covid and we set up long covid Advocacy Ireland (LCAI) in September 2022.

“In terms of long covid support, we are disappointed as parents, we feel the government seems to be minimising long covid in children. They have stated that it is rare in children and when it does occur it is of short duration. It is by no means rare and we have children in the charity who have had LC since the first wave in 2020.” 

“Other parents, including us feel that many GPs and pediatricians do not have the knowledge of how to support us. We would love to see an awareness campaign. Another positive outcome, would be services dedicated to the diagnosis and treatment of long covid in children. These do not necessarily have to be long covid clinics but they do need to be staffed by clinicians who understand post-viral illness and stay up to date with international developments in the management of long covid.” 

Managing Jake’s daily necessities like getting dressed, bath time and mealtimes can be challenging. Jake also has frequent sensory difficulties and the outdoor light can be hard for him so the curtains have to be pulled in the brighter rooms at home. Loud noises can also be extremely overwhelming, so a classroom packed with 28 children can be very draining for him.

Paul has an empathetic understanding of chronic illness, as Sarah has ME (Myalgic encephalomyelitis/chronic fatigue syndrome), a disabling and complex illness. It is an overwhelming fatigue that doesn’t improve from enough bed rest. They both feel that this similar tendency to develop post-viral illness could be genetic and covid may have triggered it in Jake. Jake’s grandmother also has ME. Many families in the charity have reported more than one case within their family.

Sarah noticed the signs in Jake from the beginning whereas Paul didn’t want to believe it could be a medical issue and thought he was just a normal child struggling with what was going on during the pandemic. The loss of social interaction with his friends, the transference of online schooling, and the significant changes in his daily routine kept Paul and Sarah hopeful in those first few months that this might be the reason for the changes in Jake, sadly it turned out this was not the case.

He was in pain and we didn’t realise how bad it was for him. He can’t cope with a full week of school; he finds it overwhelming as he can’t focus and he’s exhausted so he attends two-three days a week, often less. 

"Sometimes we collect him early as he can’t cope and he will come home, get into his pyjamas and rest on the couch. We are conscious of the effect this will have on his education but we don’t know what else to do.” 

Paul recalls his own childhood as an eight-year-old where the school bag was flung on the floor when home from school and he was out with his friends, on his bicycle with no homework done. He says of his son’s future, “He may not have the life we hoped for him and he may not recover, we don’t know. There’s just no way of knowing.”

Jake is on supplements; medication and he has been to numerous consultants. He takes ibuprofen three times a day to help reduce the swelling in his brain which has improved the PANS symptoms. He also takes medication to protect his stomach from long-term use of anti-inflammatory medication.

Because of Sarah’s ME condition, she needs a lot of bed rest. Her ME was triggered by the winter vomiting bug which she never recovered from 10 years ago. She feels her illness on top of Jake's and the lack of supports for families like theirs, has caused so much parental anxiety.

Paul is lucky to work from home three days per week so he takes care of school collections and drop-offs. The routine of medications and managing Jake’s ongoing symptoms continue on the weekend also. Unfortunately, there is no day off for Jake from his symptoms.

Paul has learned the best way to let people know how life is at home for him and Sarah is being honest when people ask. Awareness is key for them in educating people about their situation and hope by sharing their story, it highlights the struggles of long covid for many other families.

•  For more information on long covid and support resources in Ireland and in the UK, see the websites here - www.longcovidkids.org www.longcovidadvocacyireland.com

What is PANS?

PANS is a post-viral illness caused by inflammation in the brain which leads to a range of behavioural and psychological symptoms. 

Long covid is an umbrella term and refers to any lingering effects/symptoms following a covid infection, a large proportion of LC sufferers have profound exhaustion, cognitive impairment, and post-exertional malaise (PEM) as their main symptoms, this form of long covid has many similarities to ME (Myalgic Encephalomyelitis).