#1
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Hey guys just joined this fab site..and maybe someone out there can help me so here goes...In 2006 i gave birth to my beautiful boy Ryan he was already diagnosed with gastroschisis and i had to have a emergency c section..He was rushed straight to bch to have surgery meanwhile i was stuck in hospital as i had a very bad bleed..i didnt meet Ryan for a week but 4 days after his birth my nan rang me and said his arms looked swollen but i didnt think anything of it as the nurses told me daily he was fine.. when i finally got to the hospital his arms were both splinted and they told me they had some concerns as they were both limp :/ his right arm was extermly swollen hanging straight his wrist was bent inwards anf fingers are clawed together..his left arm was bent from the elbow and couldnt be straightened but his fingers were floppy..as hes got older he had regained very little use back he can hold a bottle in the crease of his elbow and can just about hold a pen with his finger tips!! he has had tests for everything possible & has quite simply baffled the doctors in the uk..i almost feel that the docs have just forgot about us now after numerous emails and calls we are getting no where Sad Has anyone seen or heard of anything like this before? any ideas what i could do next to try and get a diagnosis?
Cheers for the time xxx
#2
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How has it been left with the UK doctors?
#3
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undiagnosed..they literally haven't got a clue whats wrong with him!!
#4
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This isn't uncommon, probably not what you wanted to hear - sorry! A have 2 friends with children with profound difficulties who have dumbfounded UK doctors, I have come to learn that there is more they don't know than they do know.
Have you had many tests?
#5
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thats definatley the case the amount of docs and professionals we've met we hoped at least 1 of them would have an idea..He had been tested for all sorts.hnpp bein one that i can remember..he has regular ecg and nerve conduction studies but there is rarely any improvement everything looks fine on the inside and if you looked at his mri scans etc you wouldnt think ther was a problem!! x


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