1) More #longcovidkids are getting #FND diagnosis
What is Functional Neurological Disorder?
A problem with the functioning of the nervous system & how the brain & body sends / receives signals, rather than a structural disease process such as multiple sclerosis or stroke. FND
2) can encompass a wide variety of neurological symptoms
Motor dysfunction
• Functional limb weakness/paralysis
• Functional movement disorders; including tremor, spasms, jerky movements & problems walking
• Functional speech symptoms; including whispering speech, slurred or
3) stuttering speech
Sensory dysfunction
• Functional sensory disturbance inc altered sensation; e.g. numbness, tingling/ pain in the face, torso/ limbs. This often occurs on one side of the body
• Functional visual symptoms; inc loss of vision/ double vision #longcovidkids
4)Episodes of altered awareness
• Dissociative (non-epileptic) seizures, blackouts & faints: these symptoms can overlap and can look like epileptic seizures or faints
Symptoms often fluctuate & may vary from day to day or be present all the time. Some patients with FND may
6) We don't know if this is the right diagnosis or if we are square pegs being pushed into round holes. FND is just one diagnoses that families are reporting.
What we do know is that we need research and support for all the families suffering. #LongCovid longcovidkids.org
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We have been asking @NHSuk@govuk to update their symptoms since autumn 2020 to inc ones kids present with.
Both on test page & symptoms lists.
Check out the comments on @trishgreenhalgh post about testing barriers.
😢 💔 ☠️ 1) Every single time a child gets infected with #COVID19 their symptoms must be believed & their treatment must be prompt.
Currently that is NOT happening , and 🔜 more kids will be at risk.
😷 🏫👨👩👧👧👩👧👨👦👨👨👧👧 @NHSuk@sajidjavid@GavinWilliamson
2) Simons returned home after a 10-day hospital stay, but her recovery was short-lived.
“I started noticing she didn’t want to come down the stairs,” Reevey said. “She started complaining, she was feeling weak.”
GROUP POST ON EXERCISE
1)"My 15 yr old son is 16 months into LC. It took 15 months to be diagnosed. He has still not received any professional advice or support about eg how to #pace; how to manage ongoing symptoms. @NHSuk@JimBethell@sajidjavid
2)He has improved slightly in the last couple of months but is still very ill with fatigue, dizziness, chest pains, migraines. His paediatrician has "prescribed" exercise via the local leisure centre. They are not mentioning GET, but the programme is not being
3)delivered via medical professionals. I am terrified that this is going to do more harm than good, so was planning to ditch it. He is already experiencing boom and bust with everyday activities- ie doing a small activity at the weekend and then taking the week to recover.
We know that #longcovidkids often report feeling brighter after 2-3 wks post #COVID19 infection & then develop #longcovid symptoms wks 4-6.
With the longest gap between infection & symptoms reported at 8mths.
Kids 🤒 in March 2020 are still reporting new symptoms.
What else do we know about #LongCovidKids ? We know that the top 10 symptoms reported in our survey are;