Updated 21st Nov 2021.
We caught COVID-19 early on in the pandemic, at the end of March, beginning of April 2020. My daughter was seven years old at the time; a happy, healthy, energetic little girl who loved to ride ponies, swim, play tennis and be with her friends.
It was the weekend before lockdown began when my partner (her stepdad) felt unwell and took to bed for a few days, which was swiftly followed by myself. A week later, Anna developed symptoms.
To be honest, if it hadn't been for my own "classic" COVID-19 symptoms, we wouldn't have suspected COVID-19 at all. I struggled for about ten days with a bad cough, chest pain, shortness of breath and extreme fatigue. My O2 sats were down at 92-93% for days but the Aberdeen Royal Infirmary COVID Hub said to stay at home.
I was clinically diagnosed by Aberdeen Royal Infirmary COVID-19 Hub over the phone and later on, independently by my GP. Community testing had ceased and PCR testing was scarce even in the hospital. It was rough and it took me about nine months to recover.
Four weeks after the acute infection, Anna became very ill, very suddenly. She was white as a sheet with bright red cheeks, a spotty rash on her arms and legs, painfully sensitive to light and noise, and a temperature of 38.5 degrees that spiked out of nowhere. She took herself to bed.
We spent the next eight days at her bedside with intermittent calls to 111. She was limp, unresponsive at times, she couldn't eat or drink and the rash spread down her arms and legs. NHS111 had her try to walk to the toilet but she collapsed against the radiator and I had to carry her back to bed. It was terrifying, and yet, they told me under no circumstances was I to turn up with her at the hospital unannounced. Her temperature was 39-40 and Calpol wouldn't make a dent in the fever. At the time, the news was warning against ibuprofen. The data was sparse and I felt I had to give her some out of desperation, simply because she was so unwell and the hospital wouldn't take her in. It turned out that ibuprofen was the only thing that would lower her temperature. Only slightly, and for a short period, but it allowed her to sip juice and nibble toast once a day.
At one point I stayed awake for three days straight. I took a nap on her floor two or three times for an hour but she was so unwell, I dared not sleep in case I woke up to find her condition had deteriorated further. For eight days we took her 'observations' every 15-60 minutes depending on her condition. Temperature, pulse, respiratory rate, O2 sats and fluid in/out. I still have those charts but can't yet bring myself to look at them again.
On day nine, she managed to eat a little more and we focused on getting as much fluid into her as possible. She was dehydrated and weak but she was able to sit up in bed and watch her tablet for short periods. Her temperature remained between 37-38 for a further three days.
In May 2020, PIMS-TS/MISC and the Kawasaki-like response to COVID-19 infection in children was only just being seen and recognised. With hindsight, this looked and felt very much like it. Doctors disagree, preferring to refer to my daughter's illness as an "inflammatory response." Funnily enough, I disagree with them too.
She recovered slowly during May and June but she was different. She was anxious, verbally and physically aggressive, refusing certain foods, having nightmares but also severe insomnia. She was angry and obnoxious one minute and then sleepy and miserable before seemingly reverting to her normal self for a while. It was Jekyll and Hyde. We assumed she was just recovering and would get back to normal in time.
Over the summer holidays her behaviour got worse. She started to stammer words, forget words and not be able to finish a sentence. She would sing and hum and be unable to stop. Sometimes she would cry and sing because she couldn't stop and her mouth was tired. She started hearing voices in her head - one voice at first. He would sing to her, say nasty things and make her cry, and often tell her she was a bad person. The other two voices would arrive a few months later.
We were so baffled by what was happening. The voices in her head concerned me but after numerous obligatory Google searches, the consensus was that it's quite normal for a child. So we accepted it and hoped they would go away on their own.
August came, the start of a new school term. She suddenly became very ill again. Conveniently, the week before term started. I felt cynical. Was she just wanting to avoid school? Looking back now, I am ashamed that I didn't take her symptoms more seriously. On the weekend before school started, she got worse. By day two of term, she was having bloods taken in the hospital followed by an ultrasound of her thyroid due to abnormal thyroid results and a swollen neck.
In the hospital she was beside herself. She was having one of her new behavioural episodes - what I termed as a "meltdown." It was shocking to see. Even now, when she has a "meltdown," it is still shocking to see. The nurses were clearly not impressed. It even says in her medical records that "mum refused to restrain Anna to have bloods taken." This wasn't strictly true. She was so out of control and aggressive that I didn't dare restrain her lest I hurt her or myself.
We were discharged with antibiotics and pain relief and a "wait and see" approach regarding her thyroid.
She did recover after a week or so and she was ready to return to the classroom, or so I thought.
On her first day back, I took the traditional 'first day of term' photo. Looking back at it now, I am ashamed that I sent her in. She looked awful. Big dark circles under her eyes, pale skin and flushed cheeks. She looked exhausted, she felt awful, but I still encouraged her into school thinking it was best for her.
Weeks later I bumped into her class teacher in our village and she confessed that she was shocked when she saw the state of my child. She said that my daughter looked gaunt, ill and "like a zombie." She told me that my daughter would struggle to stay awake in class, appeared upset most of the time and couldn't concentrate or focus on tasks. This was combined with the fact that my daughter started refusing to go to school each day because it was too noisy in the classroom and too bright for her. This wasn't like Anna; something clearly wasn't right.
I spoke to our GP who insisted that we didn't need a hearing test and that my daughter should wear ear defenders in class and sunglasses in the playground. He said she was clearly extremely anxious. He refused to prescribe anything for her severe insomnia. The peeling skin on her hands and feet, and persistent rash that had been there since May 2020, changing in appearance and itchiness over time was apparently nothing to be concerned about.
Her school were wonderful. We devised a plan; a gentle, nurturing and phased return to school. It didn't work. My kind, shy, polite little girl would scream, kick and bite at the school's doors. On one occasion I thought she was going to run away. This was not my daughter. The school were shocked. My partner and I, and Anna's Dad were deeply concerned and upset. Our daughter was lost within her head and looked as though she was being held captive by a monster. We didn't know what to do or how to help her.
The school referred her to CAMHS and to the school's paediatrician in September 2020. Our CHOICE appointment with CAMHS was at the end of November. The first appointment with the school paediatrician was the middle of December. Between September and December, the headteacher, deputy headteacher and I agreed that she should not be in school and we would work out some out of school education for her in the meantime.
In November she was back in hospital again with stomach pain so severe that they considered that it might be an issue with her appendix. She was diagnosed with inflamed tummy glands (mesenteric adenitis) and sent home to rest and take painkillers. She started online school shortly after this flare up.
She thrived during online school in November and December. She even got a certificate stating that she was "Student of the Term"! After the previous six months, I actually cried with joy. Was my girl finally okay? Whatever was wrong with her seemed to be subsiding a little. Was this her coming back to us?
She even managed to see her friends for two hours on her birthday in early December. It was so wonderful to see her smile and play. Although she was struggling to keep up with them and a little breathless. We assumed she was just deconditioned and this would simply be a matter of time and rest. She asked to go home despite her friends still playing, and promptly collapsed on the sofa, fell asleep and woke up with a migraine soon after. The price of a couple of hours with her friends was five days on the sofa unable to do very much at all.
She saw the paediatrician mid-December 2020. More bloods, and more tests. Only an iron deficiency was discovered. She was prescribed supplements and finally we secured melatonin on prescription for her insomnia. She had been getting an average of six hours sleep a night since the summer. We were desperate.
Christmas came and went. The melatonin seemed to work wonders. The iron supplements hadn't made a difference yet but as an adult with chronic iron deficiency myself, I knew it could take months. We persevered.
January saw the start of the new term with online school. She was still too poorly for her normal school. She would get daily headaches, nausea, muscle pain, stomach-aches, feeling roasting hot then freezing cold, her brain just wouldn't function and she had poor concentration on school work. There were occasional days where she might get a short burst of energy and manage a little project for online school. They were fantastic. She's an intelligent kid. An excellent writer, brilliant reader and really creative. Yet, she was a shadow of her former self. We only got glimpses of her light throughout the darkness of her ill-health.
By the end of January and all the way through to the end of March, she was very poorly. There were days on end where she could only stare vacantly at the television. She stopped eating. Her meltdowns were getting more violent and more frequent. At times they would get so bad that I was worried the neighbours would call the police. At times she physically hurt me and I wondered if she would ever actually break one of my bones. At times she would hurt herself on purpose. Household objects were thrown, broken, scattered as she travelled through the house screaming and making the strangest noises. Occasionally she would scream so loud and for so long that she would vomit. It was absolutely terrifying. There was no calming her. We tried discipline, we tried nurturing, we negotiated and bargained. These episodes could last for hours. All we could do was ride it out and she'd eventually stop when she got too exhausted to carry on.
Every single time she would end up sobbing in a heap, apologising over and over again and asking me, "what's wrong with me mummy?" and, "why am I like this now?" and, "When will it stop?" What do you answer to that?
Often I'd escape to the bathroom, sit on the floor and just cry deep, heavy and heaving sobs. What was happening to my baby?
By early February I was desperate. She had seen the paediatrician once. CAMHS had accepted her as a patient but the first appointment wasn't until late March. The GP had told me that my child was clearly suffering anxiety and mental health issues and to wait for CAMHS as there was nothing more they could do. I knew the GP was wrong. Anna was absolutely fine before COVID-19 infection and now she was a wreck. I didn't have direct contact details for the paediatrician so I took some desperate measures, scoured the Internet, found the paediatrician's email address on a paper she had co-authored and emailed her begging for help.
She rang me the very next day and said she was so sorry and that she had no idea we were struggling so much. She booked us in to see her in a few days time. I spent those days online trying to research my daughter's symptoms and behaviour. I knew deep down this was not a mental health issue. She was absolutely fine and healthy before COVID-19. April/May 2020 had been a turning point. I just knew COVID-19 had done this to her. What else could it be?
In advance of our appointment I wrote out a timeline of the past ten months. I wrote down everything. Documented dates, meltdowns and rash flare-ups, I listed every symptom my child was experiencing in the hope that something might jump out at me from the page. There were 42 symptoms! 42! I was still none the wiser.
In my searching, I stumbled upon many adults complaining of ongoing symptoms following COVID-19 infection. So many adults. I, myself had also experienced a prolonged recovery. I hadn't felt better until about January. I'd even briefly been in hospital in June because I'd also had swollen glands in my abdomen. Could my daughter also have this "Long Covid" thing they were talking about?
A few rabbit holes later and I discovered a page on Facebook called Long Covid Kids. I requested to join the private support group. It didn't have a huge membership at the time but I was on a mission. I needed to find out what was happening to my girl.
My membership was accepted and after scrolling through a few posts I could have cried. All these kids. All of them. So similar to my daughter.
All these weird symptoms. Everything from the evolving rash to the behavioural issues, the tummy pain to the insomnia. It was a magnificent light bulb moment. This was it. This is what we were dealing with. It HAD to be.
Armed with my freshly printed symptom timeline and new found knowledge of Long Covid Kids, Anna and I attended the appointment that week. The paediatrician listened. Genuinely listened. She read the timeline. She kept it to read over again. She didn't dismiss my suspicion of Long Covid. She wasn't convinced, but she didn't rule it out. Unfortunately the common issue of "we don't know it was COVID19 as she didn't have a PCR test" repeatedly came up which was deflating, BUT referrals were made to Neurology, Immunology, Respiratory and Physiotherapy.
April and May 2021 was filled with test after test. Anna had a chest X-ray, brain MRI, ECG, and so many blood tests that I wondered if it would put a dent in her iron deficiency! It wasn't just an MOT, it was a premium service with luxury extras. I was, and still am, so incredibly grateful. It was a year on. A full 12 months since she first became sick. A hellish, traumatic, painful 12 months, but it felt like we were nearing the end game. Results? All tests clear with the exception of a mild vitamin D deficiency. Nothing to see, and yet, everything to see.
Nevertheless, she was diagnosed with Chronic Fatigue Syndrome and Paediatric Acute-Onset Neuropsychiatric Syndrome (PANS) triggered by Covid-19 infection, on the basis of existing symptoms and exclusion of other (more nefarious) conditions.
What a relief to be able to put a name to it! I pushed for a Long Covid diagnosis rather than CFS, but to no avail. Long Covid didn't (and still doesn't, in children) have a clinical definition. The paediatrician said her hands were tied. She agreed that Long Covid was applicable but that the NHS wouldn't allow her to apply it officially.
It didn't matter. After 12 long months, we made it. So, what next? What can we do in the way of treatment for CFS and PANS? Short answer? Not much.
A prescription for propranolol was issued on the basis of the dizziness, migraines, dubious blood pressure numbers and anxiety symptoms. Melatonin was less effective after four months of use, but was still relevant. Vitamin D was added.
By the end of May 2021 we had seen the Physio who was wonderful and did not recommend Graded Exercise Therapy at all, preferring to recommend a pacing, resting and rehabilitation approach to recovery. However, Neurology and Immunology had both denied Anna's referral despite her symptoms being immune and neurological in nature. Our paediatrician attempted a second referral to Neurology and Immunology and added in a Speech and Language therapist referral for the vocal tics. The speech therapist was incredibly helpful with advice to help Anna's new sensory issues but also concluded that Anna's speech problems were neurological rather than mechanical and so speech therapy wouldn't really be particularly useful. The Neurology and Immunology referrals were denied a second time
Summer holidays 2021. Here we were again. More than a year had passed but the end game gradually felt further away with every passing day. The propranolol stopped the migraines and she was left with minor headaches. A definite improvement but the other symptoms remained. The meltdowns hadn't improved. The behaviour was difficult to manage. The fatigue was relentless. The rash had finally gone. None of the creams that Paediatric Dermatology prescribed helped. We eventually stopped trying and it went on it's own. That was something. Her symptoms would flare and wane, fluctuate, remission and relapse. There was no pattern, no consistency and varying frequency.
I began to research PANS deeper than before. I was aware than children had been treated with IVIG, Steroids, antibiotics and anti inflammatory medication with success. On bringing this up with the paediatrician earlier in the year, she made it clear that the NHS would not approve these treatments no matter how hard I insisted. I discovered that there are no NICE guidelines for PANS. I discovered that many other countries treated PANS. Why wouldn't the NHS?
Back to the Internet. I found the PANSPANDAS charity and their support group on Facebook. Turned out, many other Long Covid Kids members had beaten me to the post. The place was full of new members with children post-COVID-19 infection, all desperate for medical treatment that was apparently unavailable on the NHS. It became clear that the only way forward was to dig into my savings and pay for private healthcare. Much research and review reading later, I chose a private Consultant Immunologist and set up a consultation.
Then, a few days later, we all tested PCR positive for COVID-19.
Round 2, here we go.
We could not believe our luck. We knew the cases had been rising at the end of school term but we hadn't been anywhere. Not even to the supermarket. I'd even had our prescriptions delivered because I wanted to shield my daughter from reinfection whilst local cases were high. To say that I freaked out is an understatement. I think its fair to say that I was likely tachycardic for a few days! Would she be horrifically ill like last year? Would I also be ill and unable to care for her? My partner and I had only had one vaccine dose so far. Was that enough to help our immune systems jump into action early enough? My anxiety was through the roof. I tried desperately to hide my fear from my little girl, instead focusing on rest, movies, snacks and duvets.
My partner and my daughter were both much more poorly with the initial infection than the previous year. Surprisingly, I fared well. Completely the opposite to April 2020. Seven days later and we had all recovered. Such relief, but I feared for three-four weeks time. Would she have another "inflammatory response"? Would she be hospitalised this time? Would she be okay? What if, God forbid, she died. The worst case scenarios are a mother's worst enemy.
Four weeks later - No "inflammatory response." I can't described the relief.
At the end of July we had our first private consultation with a Professor of Paediatric Immunology based in London. I updated her symptom timeline, procured her long list of test results from the hospital and sent everything over to him in advance. Within one hour he had recognised, diagnosed and prescribed treatment for PANS. A letter was on it's way to our GP.
THE JOY WAS INDESCRIBABLE.
She started treatment almost immediately. Azithromycin, Naproxen, high-dose antihistamine, alongside the propranolol and melatonin as normal. A lot of medication for a wee girl. I feel awful filling her up with tablets daily. The difference in her, though. Her PANS symptoms were almost under control - I almost had my girl back! She didn't have one meltdown in four weeks. Her behaviour was mostly back to normal. Her tics became a rare occurrence and the voices in her head were very nearly silenced. She started to widen her food options. She was able to regulate her emotions and she smiles again. It was really quite incredible.
If we had had earlier treatment, had the NHS allowed my daughter to be treated with simple antibiotics and anti-inflammatories and if any of us had recognised PANS sooner... the last year could have been very different for us.
She is still too unwell for school. Although the PANS symptoms are now mostly under control, the CFS/Long Covid symptoms remain. The second COVID-19 infection has knocked her back. The fatigue is once again devastating. She manages 45 minutes of focused concentration in online class before getting a headache and collapsing on the sofa exhausted for the rest of the day. She now gets pain in her legs after walking for longer than 10 minutes and needs a wheelchair to sit and rest.
Before the second infection in July, Anna wanted to go back and see the ponies she used to ride. She also wanted to start attempting 15-20 minute gentle tennis lessons once a week but I had to cancel everything. She was way too tired. She barely makes it off the sofa most days. She hasn't seen her friends since March, and that was only for one hour. She's missing out on so many things that an 8 year old would do. She can't play. She can't enjoy her hobbies. She can't do much at all. It's heart-breaking to see her go through this.
Recently she had an "observation stay" in the hospital. We are 19 months on now, and still trying to work out what is wrong. Lab results are all normal. We're still waiting for an echocardiogram but the diagnostic journey feels like it's reached it's end. There is nothing to see and yet, here she is requiring a wheelchair with fatigue and pain such a big part of her day. Anna has still not been afforded a Long Covid diagnosis despite the WHO clinical definition being available for adults who didn't have a positive PCR in the first wave. The NHS appear to be extremely reluctant to assign that diagnosis to her, for reasons only they know.
I know that I have a Long Covid Kid at home who needs support, treatment, love, patience and time to recover. What recovery looks like, I don't know. We just have to keep going to hope that the future looks brighter than the present.
Volunteering for Long Covid Kids keeps me going. It gives me purpose and a sense of belonging. I used to have a fulfilling life. I'd go to the gym three times a week, see my family almost every day, enjoy weekends as a family and go on mini holidays around Scotland. Now, I spend every single day caring for my daughter, attempting to educate her with daily life chores and interesting conversations. Friends have disappeared over the months; maybe bored of us, or maybe fearful for their own children. I don't know. What I do know is I have now is a sick child who needs me. I am her mother, her nurse, her teacher and her friend, all in one. I love her with every inch of my being but I am also exhausted. Isolated. It's a lonely place to be.
Covid-19 has destroyed my eight year old's life, and Anna's Dad, her Step-Dad and I are collateral damage. We struggle through every day but we struggle together, as a family.
To those who minimise Long Covid in children; shame on you. Our Long Covid story is only one of thousands in the UK alone. Maybe tens of thousands. Thousands more stories will be told after this wave of Delta Variant has swept through the country.
So, please, just stop it. Stop dismissing. Stop gaslighting. Stop minimising Long Covid in children. Take a look at these kids suffering in silence with Long Covid, have some humility and do your job better.
LongCovidKids.org is a patient-led advocacy and support organisation led by Sammie Mcfarland for families of children with Long Covid. Our story started with a short film on the long-lasting symptoms of Covid in children.
We are supporting research with The Long Covid Kids Study with PeopleWith
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If your child experiences any symptoms that indicate they are unwell, it COULD be COVID-19, and you should get them a test to help identify if it is a current Covid infection. Please see our Frequently Asked Questions page for more information.