paediatric medical

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Body 'shut down'

Postby nickybee on Wed Aug 14, 2013 5:24 pm

Hello - just wondered about the incidences of body 'shut down' in M.E sufferers. Our 17 year old son has had M.E since age 9. His has been a rocky road, with one period of total wellness when he wad 15, which lasted 12 weeks then total regression and severe symptoms.
He started having seizure-like episodes early in 2012, with whole-body convulsions etc, which have been diagnosed as 'neurological paroxysmal attacks' (non epileptic) Often now he gets times when his body just stops working - he's conscious, but unable to move, just mumble, then he loses concsiousness for up to half an hour with small twitches of fingers and toes, followed by slow regaining of awareness and physical movement. These episodes occur in clusters of maybe 3-4 a week then maybe a couple of weeks without any. Is this common with M.E?
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Re: Body 'shut down'

Postby Dr Caroline Grayson on Thu Aug 15, 2013 12:20 am

From your post I am unsure whether your son is accessing any specific psychological support with his symptoms. I have certainly seen similar presentations in young people and in these cases I have sought psychological support..
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Re: Body 'shut down'

Postby arisonsned on Thu Aug 15, 2013 4:24 pm

Well this is a good illustration of why children and adults are dying from this illness...
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Re: Body 'shut down'

Postby Neuroimmune Alliance on Thu Aug 15, 2013 7:42 pm

Seizures and body locking are commonplace in SEVERE ME.

There is nothing psychological about them whatsoever.

When a virus migrates out of the blood and into the brain it can cause such symptoms.

I believe Dan Peterson and Ian Lipkin are doing spinal fluid studies.

You may find this article helpful

http://www.the-scientist.com/?articles.view/articleNo/35271/title/Viruses-on-the-Brain/
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Re: Body 'shut down'

Postby Valentijn on Fri Aug 16, 2013 2:28 pm

Dr Caroline Grayson wrote:From your post I am unsure whether your son is accessing any specific psychological support with his symptoms. I have certainly seen similar presentations in young people and in these cases I have sought psychological support..

I'm confused - how does psychological support help with convulsions and other physical symptoms in a biological disease? I suppose getting some reassurance and emotional support would be nice, but I'd think appropriate medical care would be a bigger priority.
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Re: Body 'shut down'

Postby Dr Caroline Grayson on Fri Aug 16, 2013 10:35 pm

In this case of course it is important that there is support for the physical symptoms and I didn't mean to in any way to down play these, however for any young person who has had such longstanding physical symptoms of any kind I would anticipate joint working with my psychology colleagues in order to help with recovery
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Re: Body 'shut down'

Postby Valentijn on Sat Aug 17, 2013 4:40 pm

Sorry, but I'm still confused. CFS/ME is classified as a neurological illness in the UK, and by WHO, and not as a psychological illness. So why does the answer recommend that the patient is referred to a psychologist, when experiencing seizures? Perhaps that answer would be appropriate for a psychological illness, but it doesn't seen helpful or appropriate for addressing the symptoms of a CFS/ME patient.

Could an answer please be supplied that addresses the neurological aspect of the illness?
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Re: Body 'shut down'

Postby Bluebottle on Sun Aug 18, 2013 10:32 am

What tests could be ordered please that would reveal the physical cause of the child's seizures?
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