Do contact us if you want to share your positive stories about what has helped your child on their road to recovery.
LCK: Note
Please seek medical advice before taking supplements, particularly if your child is on pre-existing medication.
You should also be aware of the risk of Post Exertional Malaise/Symptom Exacerbation (PEM/PESE) before undertaking exercise. As health and energy levels improve it is important to only reintroduce exercise gradually and monitor for any return of symptoms. Seek medical advice or guidance from a physiotherapist specialising in energy limiting conditions.
This article originally appeared as an open letter on Medium posted by user Just Me.
A Teenage Story of Recovery. How We Cracked Long Covid
(This is for anyone with Long Covid (LC), caring for someone with LC, worried about LC or simply any parent of a sick child struggling to know what to do to help them.)
I have started this letter to you over and over and I still don’t know where to begin. I want to share hope. I want to share good news and I want to offer some light. However, I am nervous — nervous that it could all still go wrong, nervous that people will argue with me, nervous that I can’t really make your life better.
But I guess that is the point. I have been fighting for my son over and over this last year — and reading and researching and challenging, and now I am tired. Really tired. But I still want to help. I want to help you. If I can.
So if you don’t believe in Covid, Long Covid and don’t have a spare twelve minutes to read all that I have to say, please just stop now and click on something else.
Since an illness of a high fever and inflamed hands and feet (red swelling that meant he couldn’t stand, walk or hold a pen) in January 2021, my 15yr old son has been suffering from Long Covid. I have this in writing, diagnosed by four consultants and accepted by the fifth and current paediatrician. And I know this makes us luckier than most of the children out there.
Our path has been a long one — 8 months and counting — he has been seen by 3 dermatologists, one cardiologist and a paediatrician. Luckily we have medical insurance and an attitude! He did not attend a full day at school between February and July 2021. His attendance was 60.8%.
PLEASE BE CLEAR — HE IS NOW WELL. Stick with me, this is what I want to share — but it is a long road and I don’t want to short change you. I don’t know how long this will last, but he has done two full days at school, he is happy and soon we will reintroduce exercise. It feels like a good time to share our story with you.
There are different types of Long Covid and different experiences — we were never referred to a long Covid clinic as he hasn’t had lung issues and we were told ‘there is nothing that can be done for his fatigue, so here is a leaflet on ME, see if those regimes might help.’ So, yes I call this ‘our’ story rather than ‘his’ story as I have had to research and read and argue hi and email and beg and bully to get to this point.
For him, Long Covid settled into three main issues and I will deal with each of them, in case one or more is relevant to you. Please note everything here took place over MONTHS. Not days. We would get desperate and try something or someone else.
A. Inflammation of hands and feet. This was the first and most striking symptom. A strong horse riding teenager who suddenly can’t stand as his feet hurt too much. A child who loves to study unable to hold a pen as the pain and swelling and heat in his hands made it impossible. Unable to wear shoes and unable to walk barefoot, watching him try to shuffle around the house was enough to break hearts. And all we knew was — ‘there is a thing called covid toes but this looks different.’ Luckily one doctor suggested we take a gamble and put him on 75mg of aspirin a day as that was what they were using in hospitals and it seemed to help. This brought the inflammation down and reduced it to daily flare ups — maybe 2 or 3 a day lasting 30mins each time. (Then the GP told us to stop it after three weeks as he shouldn’t be on aspirin. The flare ups duly increased … I ignored the gp and after 3 weeks of debating, I simply started giving it again.) We used anti inflammatory cream directly on the skin — a pharmacist’s suggestion when she saw the excruciating pain he was in. This took the edge off the pain but did nothing to help with the frequency of the attacks. A homeopath helped too — I was very sceptical but had reached desperation stages and so we tried. Rhux taken three times a day felt like a miracle cure — he was now down to two flare ups a week!!!This carried on until July. JULY. I had found something online that I thought matched his symptoms but the paediatrician shrugged it off saying it was all part of ‘post viral fatigue’. In the end I persisted and saw a dermatologist who totally agreed with me, she looked at the videos and pictures. She prescribed a steroid cream to be used daily for a month and then said if it didn’t work, and if once the post viral symptoms had gone this persisted, she would refer him to a person she knows researching this excruciating illness at Oxford. (SPOILER: the cream worked!!! Plus the regime he is in now. So here was first the ray of hope.)
On one hand it was a relief to have someone put a name to it. On the other hand, it was terrifying to think this could be permanent. The diagnosis? Erythromelalgia. Dysautonomia is a term that refers to a group of autonomic nervous system disorders that include … erythromelalgia. I will come back to Dysautonomia.
B. Brain Fog — sounds rather trivial doesn’t it? Something we can giggle about. ‘Oh yes I get that? Hahah, wait until you hit my age…’ Well, when you are 15 and can’t find the words to speak, when you enter a classroom and can’t find the pens in your bag, or remember what you need, when you walk into a room and don’t know why you are there — that isn’t funny. That is a life falling apart. And when this carries on for months and months it is nearly impossible to find the will to keep going. (My son has an incredible resilience and there will be another post about helping with mental health — but for now know that brain fog isn’t a joke. It is an invisible symptom that has people laughing at your struggles and doctors doubting it is that bad.) How do you measure that sort of struggle? How do you help? You can’t. I repeat, you can’t. There were no creams or pills for this.
It was a throw away comment at the first paediatrican’s appointment that started me researching this. He said ‘you are a bit tachycardic when you move — but that’s easy to cure. We increase your fluids and salt.’ The solution was to drink 2.5 litres a day (cue Amazon purchase of an enormous bottle!) And eat an extra packet of crisps a day. When this helped a little, we all breathed a sigh of relief.
Until one day when the school called and asked me to collect him asap as he was really unwell. Again, a teacher made a critical comment that was vital in me being able to understand what was going on with my son. She said, ‘but you were sitting chatting to your friends when I saw you at lunch, how come you now have to miss History and go home?’ When he got in the car, he couldn’t speak, he couldn’t find the words to tell me what had happened. I made him breathe and relax and try again in five mins.
He said, ‘I was fine, chatting and really looking forward to History but then I stood up and it felt like someone had poured concrete over my head. I couldn’t move or speak. I felt sick and went to the nurse.’ He didn’t tell the nurse that detail — because he couldn’t. His brain was buzzing and he couldn’t find the words to ask for help.
Pause — and read that again — my 15yr old son, 6 months post covid — couldn’t access his verbal skills to ask for help.
Luckily, I had been reading and reading and reading everything I could find all the time and I’d read about POTS, as a long term result of Covid. Positional Orthostatic Tachycardia Syndrome.
So when we got home, I made my son stay in the car, I got the pulse ox monitor we’d bought as ‘a precaution’ and made him sit and stand and sit and stand a few times. Every time he stood, his pulse jumped sky high. From 70 to 125, in seconds. Just from standing up. Over the next two days I made him do this at random times and recorded the results. I then emailed the pediatrician and said, ‘he has POTS and we need your help’. At our next appointment, instead of doing his height and weight only, suddenly the nurse took his pulse and blood pressure and lo and behold, in the appointment it was confirmed. They had matched my results and he was diagnosed with POTS. Now this isn’t a cure, but it is an answer — it explains why my son spent the first five minutes of every lesson feeling behind and slow and stuck struggling. Moving between classrooms set it off. Every single time. He wasn’t dozy or bored or not trying hard enough — his body could not regulate his pulse.
Cue a quick referral to a cardiologist who confirmed that this is NOT a heart issue but a regulation issue. Dysautonomia. (yes. Again. I promise I will come back to this …)
C. Fatigue: Tiredness, CFS, ME, post viral… whatever you call it, this is the most dismissed of all the symptoms. Sleep does NOT fix this.
He was always sleeping. He went to bed at 9, woke at 6.45, by 11.30 he was too tired to be at school — by 1.30 he was asleep and had to be woken around 3.30 every day. My 15 year old son was napping like a toddler. And if he didn’t, he would fall asleep everywhere. He fell asleep in the nurse’s chair whilst waiting to have blood drawn. He fell asleep so deeply at school that he fell off Matron’s bed. The one time we tried to eat out, 6pm, we had to leave in a rush as by 7.10 his head was drooping at the table. That is fatigue. Fatigue is when you can’t walk around a garden, let alone walk the dogs. Fatigue is when you can’t go see (not even ride, simply visit) your horse because the effort to walk from the car to the stable is simply too much.
There is no cure for this. So we followed the guide given to me by the GP. We set a routine. Up by 8am, bed by 12.30, up every afternoon before 5pm, bed by 9pm, three meals a day and one period outside in a chair at some point. For months and months, this is how he lived. The morning section was spent at school and the afternoon was spent working on his A-level (he achieved this — this is not a lazy kid, this is an intelligent, passionate, dedicated teenager who was suffering and refused to quit).
NOW YOU HAVE TO REMEMBER ALL THREE OF THIS WERE HAPPENING AT THE SAME TIME. THEY DIDN’T TAKE IT IN TURNS. HE COULD FALL ASLEEP IN A CHAIR, HAVE HIS FEET SWELL SO HE COULDN’T STAND, AND NOT REMEMBER WORDS FOR THINGS ALL IN THE SAME DAY, ALL AT THE SAME TIME.
So I read and I googled and I joined a Facebook group called Long Covid Kids. Some days I would hide the group as the pain and suffering I was reading about made me sob. But I kept going back, because this was the only place I could see people looking for answers. People shared experiences and remedies — few and far between and research. Lots and lots of research. In amongst that now and again phrases like ‘low histamine’ and ‘mast cell activation syndrome’ would pop up and it always felt too complicated too much to delve into. I didn’t want to think about diets, I wanted someone to jump up and fix my child. To give my baby back his life. No-one did.
So I kept looking, and in my email about POTS to the paediatrician I asked him to measure my son’s histamine levels. We begged him to redo the blood tests and add one for that. We said that if it all came back as normal, we’d accept another three months waiting to see if he just got better — the only thing being told to us at this point.
The tests were all normal.
Except… a week after the tests were done, I got a call from the doctor. ‘Put him on a low histamine diet now. Be strict.’ His DAO enzyme — the enzyme we all automatically produce to deal with histamine was through the floor. (Anything 10 or over was ok, his was a 3.)
This is my hope for YOU. Ask your doctor to do this blood test asap. If it is normal, then fine, but if it isn’t then this is treatable!! No one is routinely looking at this. No one. Yet?
I went back to the internet, back to researching but quickly realised there is very little online about low histamine diets — there is little research and lots of warnings about how limiting it is and needs to be supervised.
At this point I nearly gave up. I am an English teacher, I am not a scientist — I couldn’t keep doing this. But something kept jumping out at me. Dysautonomia. (Relevant to YOU as this can affect ANY bodily system that works automatically — brain, bladder, lungs, gut …)
His hands and feet were inflamed because the body wasn’t regulating inflammation properly, his brain fog was because his pulse was not regulating properly. His fatigue and occasional bowel symptoms were because his gut is not regulating properly. What if resetting his histamine levels could actually cure him? This was a real possibility and more than a cream or a vitamin or an aspirin for the rest of his life. So I gave myself a shake and carried on.
I did more research, I asked more questions and I found someone who has had experience helping people with this, but in his words ‘this is a new discipline and Long Covid is a new condition and whilst I can help, I won’t promise to have all the answers. And beware anyone who says they do.’ My son and I adored his honest attitude and kindness and signed up with him asap. Nigel Denby helped me get my son back. Don’t get me wrong, Nigel is amazing and I would love you all to talk to him but this regime takes effort and planning — I know more about histamine and food production than I ever thought possible but it has given us our son back.
This is not something I am qualified to write about — I am happy to chat to anyone who wants to reach out and I will point you in Nigel’s direction or give recipes and share shops that have worked for us but don’t go online and simply follow something for a week and think that is good enough. It isn’t. My son has lost weight, we need to work on reintroducing foods — the data online isn’t accurate. Certain sites all clash with each other — you will find saying something is ok and others saying it isn’t. Get expert help and then stick to it.
So what is the hope that I wish to offer? If you don’t have POTS, Erthomelagia and fatigue, you may say this isn’t relevant to you — but I want to offer you hope in yourself. Stick to your guns. You can research and ask for help, join Long Covid Kids, read and email your doctors — don’t just sit there and suffer. Different people have helped in different ways and this whole thing has been, and is, a journey but my son is back.
My son hasn’t napped in nearly a month, he hasn’t had a flare up in three weeks, his brain fog has gone, his heart rate is approaching normal. And best of all?
He has done nine full days at school with huge grins and not a sign of fatigue.
(Note: we all got covid again three weeks ago, and he suffered the least, recovered the fastest and didn’t have a single relapse of any of the symptoms!!)
I wish you well, I send you light and love but mostly remember:
There is hope.
Notes/Links/Info: Daily Regime: Low histamine diet — very strict, 75mg aspirin, 12000IU Vitamin D3, Vitamin C & Zinc, Echinacea hi x2, Berroca Energy (Vit B1/B2/B5/B12), Symprove — probiotic
Nigel Denby: Nigel Denby BSc RD is an award winning Registered Dietitian (ignore the menopause stuff — as he told my son, he is doing more and more work with people who suffer from histamine intolerance and that is something a 15yr old boy and a 55 year old woman can have in common!) www.harleystreetemporium.com Long Covid Kids: Incredible parent support group, campaigning group and font of all knowledge! https://www.longcovidkids.org/
Dysautonomia: this can affect any bodily system that works automatically — brain, bladder, lungs, gut…
https://my.clevelandclinic.org/health/diseases/6004-dysautonomia
POTS:
https://www.potsuk.org/
Erythromelalgia: https://erythromelalgia.org/
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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