DS11 so exhausted can hardly get out of bed

[Pipeskeepleaking]

DS is a livewire: super fit, walks half an hour each way to school, regional level sport etc etc. Also ADHD: he doesn’t really sit still.

He’s had two ‘nothing’ viruses back to back - neither made him super ill - cold not flu type things. But he hasn’t recovered from the second. I mean REALLY hasn’t recovered. He’s completely exhausted. All day in bed today. No screens, only bits of reading (younger child books). Tears, lethargy. Still eating well.

i think I need to take him back to the GP, but what do I ask for? What might this be? I am frightened…

Can you check if any of paediatric POTS symptoms match your son's: https://www.hopkinsmedicine.org/health/conditions-and-diseases/pots-a-little-known-cause-of-extreme-fatigue#:~:text=Many%20describe%20it%20as%20feeling,trouble%20concentrating%20and%20thinking%20straight. I understand that Autonomic Nervous system is involved in POTS and also post viral fatigue, long covid fatigue. When it is damaged , it's called dysautonomia. Very few experts are trained in this, but the duty of clinicians is to find out, ask them, learn from them. Any symptoms do you think match dysautonomia? ''Fatigue is an independent (long covid) symptom whose cause is still unclear. The involvement of the autonomic nervous system (ANS) in the physiological activation and sensation of fatigue has been previously highlighted, and dysautonomia could be one of the causes '' https://my.clevelandclinic.org/health/diseases/6004-dysautonomia

America explaining long covid in children, making sure they encourage children to get vaccinated. Not one UK website about long covid in children does this! Not one doctor bothers to mention the most essential prevention, the cheapest, most basic knowledge- covid vaccines. But they are ready to normalize any consequences, any sickness hurting UK children exposed repeatedly, without any protection, to a harmful virus that they pretend is mild. Make them read this and ask them how is it possible they didn't know about this? https://www.healthychildren.org/English/health-issues/conditions/COVID-19/Pages/Long-Haul-COVID-19-in-Children-and-Teens.aspx

Sorry to hear he's not improving yet. Have you had any feedback from paediatric review?

Does your son have any of these symptoms: https://www.childheartspecialist.com/london/postural-tachycardia-syndrome-pots/ What other symptoms does your son have? Example: numbness, tingling, dizziness, feeling sick, appetite changes, sleep changes, fever or feeling cold,headaches, lightheadedness, nausea any symptoms in addition to feeling tired

Is he any better @Pipeskeepleaking ?

Hope he doesn't have ME. I do . If he does ME that would be incredibly bad advice . The opposite of the NICE guidelines.

Been to hosp and had a whole round of tests which show nothing at all. B12 is high not low in fact.

I said he was getting breathless doing almost nothing, so they did a walking sats thing, which seemed ok (fall of about 3-4%) but when we got home - involves a short walk from the bus he was so tired and breathless I did his sats (have a borrowed oximeter) and it was 79%! Was already climbing but that can’t be ok, can it??? Do I have to turn tail and take him back in again??

Sorry if I missed the other posts but has he been tested for glandular Fever? Did the hospital tests test for this?

How long was it that low for? The machines can take a few seconds to get a reliable reading

Just to see how much uk cares about children: 1 consultant for 69,000 cases (1 year ago, they didn't bother to count them since then) https://www.uclh.nhs.uk/our-services/find-service/children-and-young-peoples-services/post-covid-service-children-and-young-people ''12 weeks after a likely or proven COVID-19 infection'' - even for those not tested for covid. How many referrals did GPs make if the main long covid symptoms are considered normal by them, meaning they don't need any investigation or treatment? Tests which should have been done by the GP: ''Investigations:

• Pulse, oxygen saturations, blood pressure, urinalysis (protein, blood glucose)
• Blood tests (dependent on symptoms): FBC, blood film, U&E, creatinine, LFT, TFT, ESR, CRP blood glucose, coeliac screen, CK, ferritin
• Additional tests (depending on symptoms/clinical judgement): e.g. brain MRI, faecal calprotectin''

''Among the often-mystifying, extended effects of COVID-19 is post-viral fatigue syndrome, or (PVFS). A small new study finds that dietary creatine may help alleviate its symptoms.'' https://www.medicalnewstoday.com/articles/can-creatine-supplements-help-people-with-long-covid

That's not good. Take him back, but may have to Uber to bus stop or call 111.

I would go straight to A and E if that is a reliable sats test result. Did you photograph it?

It's incredible how again they did the wrong tests and sent him ok because the tests are ok. Of course they did the wrong tests. It's hard to believe they are all happy to send a sick child home. Did they bother to contact experts when it's obvious they have no clue? How on earth is it ok with them to do nothing?https://royalsociety.org/blog/2024/02/is-there-hope-for-people-with-long-covid/?gad_source=1&gclid=CjwKCAjwrvyxBhAbEiwAEg_KgjE3AZgZZO-2Aa0v3Bp6-jE5NlGjlEyrk3LlJwc5Ov6YlxUn_KAqmhoCe-YQAvD_BwE Did they even start thinking about long covid and how the same symptoms affect millions in England? Did they call experts from other hospitals to find out? Doing nothing is their only solution and they are happy because the wrong tests are ok, despite the fact that they dealt with sick people having the same symptoms in the last 4 years? Millions!

''Breathlessness and dysfunctional breathing in patients with postural orthostatic tachycardia syndrome (POTS)'' How much pain and suffering do they need before crossing their minds to rule out POTS? https://pubmed.ncbi.nlm.nih.gov/31743851/#:~:text=Postural%20orthostatic%20tachycardia%20syndrome%20(POTS)%20is%20a%20chronic%2C%20multifactorial,is%20known%20about%20the%20aetiology. Did they do these tests: ''Investigations:

• Pulse, oxygen saturations, blood pressure, urinalysis (protein, blood glucose)
• Blood tests (dependent on symptoms): FBC, blood film, U&E, creatinine, LFT, TFT, ESR, CRP blood glucose, coeliac screen, CK, ferritin
• Additional tests (depending on symptoms/clinical judgement): e.g. brain MRI, faecal calprotectin'' - University College London https://www.uclh.nhs.uk/our-services/find-service/children-and-young-peoples-services/post-covid-service-children-and-young-people

How much pain and suffering do they need before crossing their minds to check for long covid which can affect any organ, whose main symptoms are breathlessness and fatigue and which affected 3,000,000 people in the last 4 years. It's obvious none of have any clu or heart: did they ask other hospitals - VIROLGISTS- what to do? Or doing the wrong tests that show nothing wrong, sending a sick child home with nothing is their only solution? Do the have any trace of humanity?

Your poor boy. And poor you. Keep pushing the GP. Is he managing to eat?

This is CDC (American Centre for Disease Control, the equivalent of PHE in the UK with the difference that PHE is not involved in anything to do with covid, despite covid being a notfiable disease, because the only solution in the UK was to ignore everything, learn nothing and pretend nothing changed since 2020, when the truth is the medicine changed forever) ''People with Long COVID may develop or continue to have symptoms that are hard to explain and manage. Clinical evaluations and results of routine blood tests, chest X-rays, and electrocardiograms may be normal.'' CDC like in any civilized country never stopped recommending vaccines. Nhs/PHE - never did. CDC recognizes long covid as a dizability. NHS doesn't even recognize long covid as a medical condition, if they did they would have had covid test (nasal swab and blood test to check for current and previous covid infections) This is why here there are no doctors giving you advice, just opinions coming from the heart of other parents. Despite 1 year ago long covid affecting 69,000 children and I assume a lot more by now because NHS has no vaccines, no tests, no treatments. Despite long covid trials being done in UK hospitals, by real experts. So you will have to demand the correct tests and the health care your son deserves and ask them why didn't they read a fraction of a tsunami of research done all around them? CDC: ''The symptoms are similar to those reported by people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and other poorly understood chronic illnesses that may occur after other infections. People with these unexplained symptoms may be misunderstood by their healthcare providers, which can result in a delay in diagnosis and receiving the appropriate care or treatment. www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html

This is British Medical Journal - all UK doctors have free access to read BMJ- what did they do in the last 4 years? BMJ: '' I wasn’t given any specific treatment, but I was referred to a respiratory physiotherapist. I had already been doing some breathing exercises so was sceptical, but it actually proved quite helpful and made me realise just how bad the way I was breathing had been..... I underwent lung function testing in February 2023—nearly three years since I had covid-19.'' - Did the send your son for LUNG FUNCTION TESTING? Or will they wait a few years before doing the 1st step even a layperson would recommend?Breathlessness in a child, without even checking his lungs first before 'reassuring' the parent that all tests are ok? Invite them to do some reading: https://www.bmj.com/content/381/bmj-2023-074937?gad_source=1&gclid=CjwKCAjwrvyxBhAbEiwAEg_KglaJIEPl_VjfL8Ojv6LqJ1n3MQ-tSDIMZsi2Qe7q8NcQ3lfJRS5RbRoCV2oQAvD_BwE Did it cross their minds to check for DYSAUTONIMIA? “Dysautonomia” is the general term for disorders that disrupt your autonomic nervous system (ANS). It can describe several disorders, each with varying symptoms. Dysautonomia can range from mild to severe. Your ANS is a subdivision of your nervous system. The term “autonomic” means ”self-governing,” and the ANS manages all of your body system processes you don’t think about. That includes your blood pressure, body temperature, BREATHING, digestion, heart rate, sweating and much more'' The correct tests would have been: LUNG FUNCTION TESTS, TESTS FOR DYSAUTONOMIA, before sending a sick child back home.https://my.clevelandclinic.org/health/diseases/6004-dysautonomia Fatigue is one of its symptoms.

https://www.mayoclinic.org/symptoms/hypoxemia/basics/definition/sym-20050930 ''Hypoxemia is a low level of oxygen in the blood. It starts in blood vessels called arteries. Hypoxemia isn't an illness or a condition. It's a sign of a problem tied to breathing or blood flow. It may lead to symptoms such as:

• Shortness of breath.
• Rapid breathing.
• Fast or pounding heartbeat.
• Confusion''

When you explained the clear symptoms of HYPOXEMIA, did the believe you, did they inform you about its medical term? Or because it didn't happen while they were examining your son, to them it meant it doesn't matter?

https://www.gavi.org/vaccineswork/five-things-know-about-long-covid-and-chronic-fatigue-syndrome?gad_source=1&gclid=CjwKCAjwrvyxBhAbEiwAEg_KgnW0DIeUgEv2TLT9I0wmiPOOYOejVBVlAL5WBRP1lDq3heD2d3PICxoChQEQAvD_BwE ''While FATIGUE has been linked to Long COVID right from the first few cases, Long COVID also presents with a constellation of symptoms including gastrointestinal issues, SHORTNESS OF BREATH and loss of smell or taste.''
Remember in the UK no one is entitled to antivirals, unless, as NHS says and means nothing : ''you're at highest risk of getting seriously ill from COVID-19'' without bothering to explain what highest risk means - empty words used to reduce access to antivirals, the same as they reduced access to vaccines. The only full access UK children have is to full covid infections, anytime, anywhere, repeatedly!

Pneumonia? I hope the doctors are taking this seriously now if his oxygen saturation is low.

well he was admitted last night. We are no closer to any answers as it’s still the case that all the tests they have done and that have reported (inc that whole raft, @ForRoseExpert ex MRI) have come back negative.

plan now is that we will go home tomorrow and then come back for review once the remaining tests (I can’t remember exactly which - various inflammatory markers, some things to rule out some rheumatological possibilities, other more sensitive viral testing) come back.

its a mystery: he is really not well - everyone agrees about this - but nothing seems to be showing up. Do send any other ideas about things I should be asking about…

What did they admit him for? Was there any clues in that?

If you are worried, at ward round today you can say you don't want to take him and wait for tests and review as In patient.

There will be more momentum if he is in.

Apart from exhaustion, any more symptoms that he did not have before?

Any obvious blood sugar symptoms high or low? Some kids can get a period of low blood sugar after a period of illness -

Is he eating and drinking normally?

There are so many things this could be & post viral can take a long time, but if he has changed so much would try and stay in - but you know more about how he is - hope you get answers soon.

Could you please find out the exact name of all tests: when you say viral test, what do they even mean? Did they test for antibodies and autoantibodies (in autoimmune disease, there are autoantibodies, viruses can cause autoimmune disease)? I understand that covid which can cause these very symptoms weeks or months after a mild or even asymptomatic infection (so impossible to trace it back) can affect the blood vessels in 2 ways: inflammation ( I understand the normal inflammatory markers don't show this) or microclots (in the UK there were trials with these tests). Did they send you to a lung specialist, considering the breathlessness? Microclots can be seen with a microscope, I understand it's not a difficult test, but NHS doesn't do it, despite the fact that I heard British scientists talking about it. Did they talk to a virologist (they are only 11 in the UK!!) If they think it might be post viral, then it's obvious they need an expert (they don't study virology when they study medicine, so a virologist's advice is vital). Did they try a lumbar puncture https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/lumbar-puncture#:~:text=A%20lumbar%20puncture%20(LP)%20or,(CSF)%20or%20inject%20medicine. ''The clarity and color of the fluid are also checked and it is tested to see whether bacteria, viruses, or abnormal cells are present. '' But before all this, did they pronounce the words post viral and long covid - because if they didn't, why would they even look for them, despite the fact that these 'mysterious' symptoms affect millions in the UK alone. Did they tell you about long covid, did they try to take into account what WHO said 4 years ago that when symptoms can not be explained they should always think about covid. It's important to realize that if they didn't even mention it, it means they are not even looking for it, despite being the most common and most debilitating symptoms associated with long covid or post viral fatigue (still triggered by a virus, and when the most common virus, allowed to spread unchecked int he UK for years now and with no vaccines, then the first culprit anyone could first think of would be this dangerous virus- sarscov2)

Stephen Griffin - one of those 11 virologists, he is active on Twitter https://medicinehealth.leeds.ac.uk/medicine/staff/384/professor-stephen-griffin talked about what SarsCov2 can do.
Dr Binita Kane, on Twitter has a daughter suffering from long covid and is now an advocate for it, if you could ask her some advice, she has many youtube videos about this
Gez Medinger is a UK long covid sufferer, has many youtube videos with many scientists, doctors and researchers
they are all in the UK and helped a lot during the pandemic, maybe you try to contact them
I had to delete their twitter names, it didn't let me send this message using their Twitter accounts, I don't know why

NIH: '' MicroCLOTS (microvascular COVID-19 lung vessels obstructive thromboinflammatory syndrome) has been proposed as a working hypothesis on the nature of this atypical ARDS (1), involving a new mechanism of lung damage: alveolar endothelial damage leading to progressive endothelial pulmonary syndrome and microvascular thrombosis'' If tests for microclots are not done, can they check for alveolar endothelial damage, or do you need a lung specialist for these tests? Did they approach a lung specialist for advice?

When I listened about treatment trials, they often mentioned steroids (for inflammation) and antihistamines. Also for microclots, blood thinners, but if they don't test for micrclots, they will refuse the blood thinners

Metformin was discovered to help in long covid, because it reduces inflammation, not for diabetes, but this is how it helps diabetes too, it reduces inflammation. If they don't believe you, they can read with their own eyes: https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(23)00299-2/fulltext#:~:text=Outpatient%20treatment%20with%20metformin%20reduced,low%2Dcost%2C%20and%20safe. This is why it is important to know if they mentioned long coivd, because if they didn't why would they think to try all these very simple treatments