The Search For Medical Support By A Family Changed By Long Covid

Written By Victoria Parish

Mother to Jacob (aged 11), Alex (aged 15)

And wife to husband Stephen

When you tell a doctor that your child isn't well, but you receive no answers, what would you do? One mother describes her long journey to receiving acknowledgement, answers and support during a pandemic in which no one wants to talk about the children. Learn the subtleties of Long Covid presentation and the complexities and barriers to receiving help for your child while navigating a novel condition without a map.

Spring 2021

It’s March, we’ve just celebrated our eldest son's 14th Birthday and we’re currently in lockdown. It’s been a bit stressful, just like it has for so many families coping with partial school closures, working parents and homeschooling. Despite all this we are good, looking forward to Spring, the better weather and hopefully going on holiday again. The following week my husband, Steve, came home and collapsed in bed, exhausted. Not like him. A few days later he tests positive for Covid-19. He is unwell but manages to work from home whilst in bed on his laptop.

Jacob our youngest says he’s not feeling too good, he’s restless, doesn’t know what to do

with himself. He watches TV in bed - he is testing negative on LFT. Two weeks after Steve tests positive, I lose my sense of smell and taste and test positive, 22nd March PCR result comes through. Our eldest boy doesn’t get ill at this time. End of March Steve and I are feeling better, but we notice Jacob is not improving, shuffling rather than walking, coming downstairs on his bottom. We are concerned and call to discuss his symptoms with our GP. We are advised to allow it to play out - these things can take time. See how he is around the 6 weeks mark.

Jacob isn’t going to school. He sits on the settee or in his room. School bring a PCR postal test - negative result. I post on Facebook my concerns and another mum rings me and advises me of a friend's daughter with post-Covid fatigue. I join the Long Covid Kids Facebook Support Group.

We decide to go to A&E to get bloods taken - there was a two-week wait going through local blood services and our concerns are increasing. Jacob was tired, limp, complaining about chest pains, tingles in his hands and legs. His face was pale and grey with dark bags under his eyes. Bloods came back clear. Two weeks on, our GP messages me to ask how he is? I reply with he is now crawling as his legs hurt to walk. GP rings to say to go straight to the hospital to rule out Guillain Barre syndrome.

Steve takes him as it’s only one parent allowed. Jacob is seen in A&E then onto the children’s ward. Blood tests done, reflexes tested, height, weight, overnight stay for observations advised so I go at 7 pm to take over from Steve. Jacob is okay, he’s pale, his legs hurt, the nurses are making him walk and advise that I don’t let him lean on me. They take us around to another room we can stay in overnight. The nurses are walking ahead I’m stating he can’t walk that fast. They carry on walking ahead.

Consultant paediatrician comes on to the ward around 9pm. It feels so late! We’re so tired. He has Jacob walking up and down the room, his gait is awkward and his hips are stiff. I say he doesn’t walk like this! Why is he walking like this? He had him hopping on one leg. Jacob grabs his calf in pain as if he’s pulled it. I run through all his symptoms; as before. The consultant is checking his computer saying his bloods are all normal. He starts to ask me a lot of questions; temperature? No. Vomiting? No. Diarrhoea? No. Homelife, school, etc. I explain we’ve been a bit stressed with homeschooling and juggling work, the husband has been poorly with COVID and now Jacob is like this. I’m okay and our eldest son is okay. The consultant did look confused. I can tell he can’t make any sense of it. I explain to him; Jacob has only become poorly since we (Steve and I) tested positive.

The consultant replied with "No Test - No COVID".

He was very stern with his statement. I even thought - hang on we’re living in a pandemic with a virus no one knows anything about and this is his response. Anyway - he’s the expert. I don’t question him further - he seems agitated.

I say to Jacob you’re a round peg in a square hole, I didn’t mean to retaliate, but I could tell this consultant was baffled and he was making me feel uneasy. At which point the consultant says that Jacob’s symptoms are psychosomatic. He needs to tell his brain to make his legs walk. The stress and anxiety of homeschooling and seeing his dad poorly has caused this and he leaves.

I turn to Jacob. He is crying. He is saying, "I knew they wouldn’t believe me!" He is sobbing and starts to grab at his t-shirt neckline. He’s having a panic attack - I recognise it straight away. I console him, talk to him calmly, reassure him he’s not making it up. I feel sick and I’m really trying to hold it together for his sake. I say, "start counting with me", which he does and he calms down and collects himself very quickly.

The nurse comes in and asks why is he upset. I explain that Jacob thinks no one believes him about his symptoms. The nurse explains about how powerful our brains are and he needs to tell his brain to get his legs walking. She left.

I was heartbroken for him.

I wanted to leave.

This didn’t feel right.

On the next appointment with a different paediatrician she sees Jacob in the wheelchair. She says that she’s pleased to say all his results have come back okay, bloods, chest X-ray is there anything else to discuss? Our response was YES! What about his long list of symptoms, chest pains, can’t weight bear, dizziness, we ask about POTS (at this point we’ve googled everything.) She said he was slightly tachycardic and talked herself into arranging an ECG 24-hour holster and physiotherapy to pacify us as we weren’t leaving until something was being done. May 2021. The results of the ECG all-clear - within acceptable ranges.

Physio starts at the hospital. 1 session a week. Starts well, she seemed to want to help and gave him a walker to use at home. Jacob was still deteriorating at this stage. He was tired, out of breath, dizzy, struggling with walking unaided. We decide to seek help privately with a POTS specialist in Bedford. We saw a consultant at the end of May. He was satisfied with Jacob’s presentation: tachycardia even in the supine position, his dizziness and other collective symptoms. He gave Jacob a prescription for fludrocortisone, bisoporol & salt tablets. He requested an echocardiogram and a tilt table test to be done to confirm a diagnosis of POTS.

The medication helped! We saw an improvement within 2 weeks. Not as limp or weary, but it didn’t help his walking. The echocardiogram was done by the very original consultant from that weekend overnight hospital stay. He was surprised to see Jacob in the wheelchair. He was softer on this appointment. The echocardiogram was clear and a good strong heart was found. He was concerned about Jacob not walking so many months down the line so he referred him to a neurologist at Sheffield to repeat the MRI. The spine one from April was unclear.

Summer 2021

The Summer sees our eldest son test positive, but none of us gets it again or become unwell. Trying to get Jacob walking using his walker was so unnatural, it exhausted him.

We went to Bedford for the Tilt Table Test. Jacob only managed 20 minutes as he couldn’t hold himself longer than that in the upright position. The doctor says it’s inconclusive, I can’t diagnose POTS. He said Jacob was hyperventilating and the test had to be stopped. Jacob said he was in so much pain with his legs he couldn’t hold himself anymore.

We later discover this test is better carried out in the morning when symptoms are worse. This was carried out at tea time. Also patients should have been taken off medication for a more accurate result. We didn’t know this so Jacob was on his full medication for the test. We head to Sheffield next for an examination by neurologist. We are asked lots of questions and advised that he will organise an MRI of Jacob's head and spine. I mentioned FND to this paediatrician and he shows me the neuro symptoms website (I’ve already got the app). We discuss POTS and COVID. We didn’t learn a great deal as we knew everything we discussed from hours of googling everything. He "wasn’t a POTS expert", offered the website for FND and said COVID and its effects are unknown. Follow up zoom appointment. Sheffield paediatrician advises MRI shows nothing. We start to ask questions about Jacob’s symptoms, not walking etc. He advises us that we are under our local hospital. Jacob is attending school and it’s too far to get to Sheffield for therapies, and the services in our area are not great. End of zoom. September sees us very concerned. Six months on we are under pressure to get him to secondary school. We are weaning him off the medication as he’s on POTS medication. But he hasn’t got POTS.

Autumn 2021

The physiotherapy at the hospital is going badly; it got to the point where I sent Steve to a session as I felt this physiotherapy was all wrong. We were in and out in 10/15 mins, no plan in place. She asked Jacob what he wanted to do, the choices being; parallel bars, upright exercise bike, a small staircase. Jacob opted for the bike every time. It made Jacob dizzy and the physio asked him every time "why does it make you dizzy"? She even laughed at him when he was out of breath for doing so little.

She tried him on the bars but he could barely stand and by the time he’d put one foot in front of the other he needed to sit down. It was horrible to watch. I was told not to give up on any services from the NHS, it looks bad turning away services when you’re crying out for help. I rang the department to ask for a change of therapist and a fresh pair of eyes on him but was advised there isn’t anyone else. When I asked about wheelchair services and getting help with a wheelchair as he needs a self-propelled one for secondary school her response was "I’ll add it to my things-to-do list, it might be easier and quicker to get your own". We tried - it was a nightmare. Advised by a mobility company that paediatric wheelchairs are made to measure for leg comfort and arm length for propelling. After sending one back to Amazon we quickly realised this. A month later I asked her again to submit the form as we were struggling to buy one ourselves. At Christmas Jacob had his own self propelled wheelchair from wheelchair services.

We decide to go with a private physiotherapist. We said we think he may have POTS post-Covid but it is undiagnosed. Louis is great. Gentle, softly spoken. He listens to Jacob’s journey. He explains about building blocks and that he is taking Jacob back to the start. He advises it will take time, progress will be slow but there will be progress.

He advised me that he suspected Guillain Barre Syndrome when he first met Jacob. He kept an open mind and was treating Jacob as he presented: nerve damage and he recognised it.

We also start Conductive Education with Sarah, again a lovely, soft, gentle and encouraging person. Sarah compares Jacob to that of MS symptoms. We discuss everything with her From a gluten-free diet to supplements.

November 21 and Jacob is offered a fully-funded placement at our local well-being centre with rehabilitation chairs for adults. They adapt them for Jacob. He has a 1-1 Personal

Trainer with a PT qualification with a disability. A friend who has been following his journey reached out and approached her colleagues, setting the ball in motion. We are so grateful. We decided to put the NHS physio on hold whilst Jacob was attending the gym as to not miss too much school.

Because Jacob is now attending three physio sessions a week and he is only attending seven lessons of school a week, the SENDCO at school and his Occupational Therapist are concerned about his attendance. I receive a phone call from OT and she advises me, with my permission, that they are contacting social services, which I agree to verbally. I later realise that I was reported to MASH - our local authority safeguarding hub. Thankfully the lady on there was very good, very understanding and very supportive. We are on the waiting list for a care worker.

Steve and I make a face-to-face appointment with SENDCO to discuss exactly what is going on with Jacob. SENDCO advises us that the medical letters from doctors don’t say a great deal and without a diagnosis, there’s nothing to explain his lack of attendance. We stick with the Cautious Tortoise Guide from Long Covid Kids. We spend the Autumn through to New Year working on recovery. Chasing doctors and answers is exhausting. We had a break and focused on Jacob's physiotherapy and gym. We had a great routine and it was working. I managed to claim Disability Living Allowance for him. The paperwork for that is gruelling - it took a week to complete and a lot of tears.

Spring 2022

We receive a letter from a Consultant at our local hospital. We’d asked for nerve conduction tests and further investigations. The letter advises that no further investigations are to be carried out, “I think” it’s FND. See you in 6 months. Not happy with this letter, the lack of explanation, the root cause? What are they putting in place for Jacob now he has this “I think” diagnosis? We search for a private paediatric neurologist, through HCA healthcare, London. We get a zoom appointment on 1st March. We send over a whole year's worth of medical history, a diary of events, symptoms and brief family history.

The zoom went very well. Lots of family history; my pregnancy; birth; older sibling. She talked to Jacob and watched him walk. He can walk about 5/10 steps in an awkward way unaided.

She confirms, with his symptoms he meets the criteria for Long Covid - fatigue, lack of stamina, unrefreshed sleep, POTS like symptoms. She explains the central nervous system and FND. She explained they (her and her colleagues) are seeing many poorly children that were fit and healthy prior to COVID. She advised we don’t know the why! We now have written confirmation of this. We are heading to London for further investigations for nerve damage and to trial Jacob on Naltrexone to help with his pain.

Current symptoms

Mornings...

Wakes up weary, nauseous and weak. Needs time to come round. I can’t rush Jacob about in the mornings. Wears compression stockings daily. He has a glass of milk and magnesium supplement in bed. Has first dinner; pasta and peas type meal at 10-10:30. He cannot do anything if he isn’t 'fueled up'. Starts physio or school 11am onwards.

Afternoons...

Home for second dinner. Physio can make him nauseous, he eats and rests. Will often look pale after physio. His energy is drained. Vitamins - high doses daily. Back to school for last period. He can suffer from headaches, woozy head, dizziness randomly, weak bladder and will wear a dry night pull-up at random times of the day and night. Loose bowel to constipation, trapped and painful wind. Needs a hot water bottle, paracetamol and lays out flat to ease. He has constant leg pain, weak knees, tight calves. On top of this, he has dead legs, which feels different and come and go. Legs up the wall, a big drink and paracetamol to ease it. Dehydration. He drinks loads of water daily yet suffers very quickly with dehydration, dry cracked lips and dry throat. He knows the difference between anxiety and his symptoms- he recognises these and worked them out months ago. Random heart rate spikes show on his watch, often when simply sitting. Has spiked to 180bpm when crawling up the stairs. Low blood pressure; diastolic is often under 60.

He is very happy most of the time. He copes exceptionally well with everything. He knows if he fancies a Dominoes or a can of cola as a treat it will have him crawling to the toilet. He has accepted that.

Jacob is bright - the brain fog has lifted. You’d ask him a question early on and he’d stare into space for ages. Now he answers or takes less time thinking about his answers.

When I pick him up from school he’s shut down after a 40-minute lesson, I try not to talk to him straight away he needs time to come round.

Evenings...

Evenings he’s great. He can play Lego, do the video editing he’s got into. He can be great in the day if family or friends come he can muster the energy together to play and chat. We are used to him crawling around and his heavy breathing. We do work on his breathing exercises.

This is life post-Covid... Nathalie Pearson

Founding Member and COO

24th March 2022