I think my son has long Covid - what can I do to help him?

[Twoweekcruise]

Ds is 16 and caught Covid end of October.
He actually wasn’t that unwell with it. Shivers the first day and a raspy throat then lost taste and smell but was fine within a day or two.
However, he just has not been right in himself since.
He is very low and lethargic (teachers have said he is very tired in class), I often find him fast asleep on his bed early evening and he’ll sleep for hours.
He seems to have picked up a cold almost every week since. He feels nauseous and has regular stomach aches and often doesn’t want to eat which is so very unusual as he normally eats me out of house and home.
He has also had an almost constant cough since which eases off then comes back again.
He has been in all weekend which is so unlike him as he’s usually always out with his mates, says he just can not be bothered as he feels so tired and nauseous.
I have booked in in with the GP next week.
Does anyone else have any experience of long Covid? Is there anything he can take/do to help?
I am so worried about him.

Does he take multivitamins and minerals? My friend who has long covid has found boosting his vitamins helped to some extent. Unfortunately as it’s a new illness there is little research, but do you have a local long covid clinic?

Sorry to hear about your son. I have postural tachycardia syndrome and autonomic dysfunction (due to hypermobile EDS) which is a feature of long covid. What’s helped me is vitamins especially high strength vitamin D. Quercetin to reduce inflammation in body. Also tumeric good for this too. I take lots of salt for my pots.
Otherwise I take anti histamines for mast cell activation syndrome. Maybe worth a look too.
Good luck xx

@Twoweekcruise

Ds is 16 and caught Covid end of October. He actually wasn’t that unwell with it. Shivers the first day and a raspy throat then lost taste and smell but was fine within a day or two. However, he just has not been right in himself since. He is very low and lethargic (teachers have said he is very tired in class), I often find him fast asleep on his bed early evening and he’ll sleep for hours. He seems to have picked up a cold almost every week since. He feels nauseous and has regular stomach aches and often doesn’t want to eat which is so very unusual as he normally eats me out of house and home. He has also had an almost constant cough since which eases off then comes back again. He has been in all weekend which is so unlike him as he’s usually always out with his mates, says he just can not be bothered as he feels so tired and nauseous. I have booked in in with the GP next week. Does anyone else have any experience of long Covid? Is there anything he can take/do to help? I am so worried about him.

Where are you based? A friend of mine runs a hyperbaric divng chamber which has had amazing results at alleviating long COVID symptoms. Something to do with the 100% oxygen at pressure repairing the damaged cells.

user1471462428 He does take a multivitamin but maybe he needs a better quality one. I didn’t know long Covid clinics existed! I will ask his GP next week.
Namechange600 He does already have joint hyper mobility and I’ve been pushing for both myself and ds to get looked at for possible EDS as I am certain it runs in my family, that is interesting. I will definitely check out your recommendations, thank you x
LolaLolaLolas Thats very interesting, we are in Essex.

Long covid isn't normally diagnosed until symptoms are 3 months +

Its only been 6 weeks and that is normal to still feel tired and very rundown. Lots of rest, sleep, high quality vitamins, good food and hydration etc... can all help. Look at immune boosting foods as covid really whacks the immune system.

@Twoweekcruise They're in Rugby. It's a 2 week treatment, 2 hours a day in the chamber.

One of my kids was diagnosed with post viral fatigue (different virus, not covid) after still feeling very ill and run down months after the virus had gone.

Advice we were given, let him rest as much as he needed, sometimes this meant missing school and sleeping 18 hours a day.

Encourage light exercise, just a short walk in the fresh air. Don’t be tempted to do too much on a ‘good day’. My son did this and ended up feeling very poorly for a week after.

Eat as well as possible, difficult when they’re often too tired to eat at all. Take a multivitamin.

Have things to look forward to as they can get quite down with feeling tired, but don’t show disappointment if they can’t manage it.

Other than that it was just a case of waiting. Just over two years later, my son is much better although still can’t do long days, run as far as he used to and still needs more sleep.

@ChatDeChien

One of my kids was diagnosed with post viral fatigue (different virus, not covid) after still feeling very ill and run down months after the virus had gone.

Advice we were given, let him rest as much as he needed, sometimes this meant missing school and sleeping 18 hours a day.

Encourage light exercise, just a short walk in the fresh air. Don’t be tempted to do too much on a ‘good day’. My son did this and ended up feeling very poorly for a week after.

Eat as well as possible, difficult when they’re often too tired to eat at all. Take a multivitamin.

Have things to look forward to as they can get quite down with feeling tired, but don’t show disappointment if they can’t manage it.

Other than that it was just a case of waiting. Just over two years later, my son is much better although still can’t do long days, run as far as he used to and still needs more sleep.

This post made me feel almost tearful. I had post viral fatigue than turned into chronic fatigue syndrome and all these things are such a relief and help to rebuild for a long term recovery. Thank you for sharing your compassion and wisdom.

A trip to the gp is fine but its early days yet. My ds (then 14) caught COVID March 2020 and wasnt 100% right til the September but his symptoms did eventually go away, whilst I do have long COVID and am still going 18 months later. Try not to worry too much just now.

Thank you all for the advice. I’ll try not to stress so much over it as it’s early days yet. A good multivitamin, lots of fruit and veg and rest it is then.

This post made me feel almost tearful. I had post viral fatigue than turned into chronic fatigue syndrome and all these things are such a relief and help to rebuild for a long term recovery. Thank you for sharing your compassion and wisdom.

Sorry if I’ve made you tearful. 💐 How is your health now?

My son went from a really fit 15 year old to being so poorly and tired that some days the thought of walking downstairs was too much. We had so many tests done as I was convinced there was something more, I didn’t realise quite how debilitating post viral/chronic fatigue was. I’m certainly more educated on it now and realise that as awful as it’s been, we are lucky that on the whole he is recovered.

He takes life a bit slower now, which is hard at his age. He’s really good at managing it though, he knows if he has a couple of longer days, to then plan a quiet couple of days to just rest.

Managing the mental health side of it is really important. When you go from having a busy, full life to sleeping so much and feeling drained so easily, missing out on fun things and seeing friends etc, it takes its toll. So much focus is put on the physical side effects but the emotional/mental ones need talking about. We had a lovely doctor who was the one who suggested planning things to look forward to but not showing disappointment if they weren’t manageable at times.

I didn’t know long Covid clinics existed! I will ask his GP next week.

So sorry to hear about your son but I would warn you not to pin your hopes on getting into a Long Covid clinic. We're coming up to 1 YEAR since DS first saw the doctor and he still hasn't been seen. I was told he's 75th on the list.

DS is also hypermobile and has been seeing physio/OT for joint pain which is helping. Physio has advised not to push himself too much. He has a very good diet plus takes a multivitamin & vit D but the chronic fatigue persists.

Normally we let him sleep as much as he needs at weekends and he has a 1-1.5hr nap most days after school. He's off school at the moment so sleeping constantly.

I would recommend asking your GP to do a full blood test, and get the lab to check for iron (both haemoglobin and feritin) red and white blood cell counts, vitamin D, B12 and folate.

My husband and daughters had covid in oct half term, and although I did have the heavy cold the week before that I repeatedly tested negative on lfts and pcr tests.

I phoned the GP at the start of Nov as I was really struggling with getting enough oxygen, feeling light headed, tight chest, dizzy, shaky and extremely fatigued. I got sent to the emergency care centre and then spent the whole day in A&E, had chest x ray and ECG, all fine. Only thing they did find though was extremely low iron levels - my ferritin was at 3, and it should be more like 80!

Over a month later, I'm only just starting back to work on a phased return starting this afternoon. Have had 3 ferrous sulphate (iron) tablets every dqy and am also supplementing with double dose of high strength Vit D, B12 spray and multivitamin drink with b complex.

The more Ive read about anaemia the more I've found that so many symptoms, not least fatigue etc, can bw down to that, but also that iron levels can drop significantly in response to fighting off an infection, so really need building up after. Also that the optimum levels are way higher than those deemed acceptable by nhs standards.

I have a referal this afternoo for an appointment to see respiratory consultant at the hospital to see what else we can nkw do ro further boost my energy levels and reduce the breathlessnes and lightheadedness, as I really want to back to my usual hours at worm in Jan.

Hope the GP is helpful, Ive really had to convince my to test for all the right things, not just be fobbed off with 'its post viral, just rest'. Ask for a print out of the blood test results too.

Hyperbaric oxygen treatment could help with all these symptoms.

Ben Whittaker won a boxing silver medal at get Olympic this year. He was unable to train due to long COVID. He had 8 sessions in the chamber (he had to leave early due to isolating in Japan for 2 weeks).

Fatigue and joint pain are the most successful I think.

@Twoweekcruise that is interesting that you have EDs in the family
I would say for me my suspicion is that my POTS AND MCAS got worse post covid infection (but I do have a complex medical history including numerous major surgeries).
Read this aboutEDS and comorbidities.

www.rcgp.org.uk/clinical-and-research/resources/toolkits/ehlers-danlos-syndromes-toolkit.aspx