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worried about ds (10)

1 reply

generalhaig · 28/03/2011 10:16

ds has mild asperger's, hypermobile joints, low muscle tone, continence problems, gets tired very easily, has luminously pale skin (although does tan in the summer), is ludicrously tall and thin with long, skinny fingers and feet (looks a bit like a giant spider)

His shoulder joint is very unstable and seems to be getting worse - he spends ages 'clicking' it back into place - he can stand with his arm outstretched towards a wall with his finger tips about 2-3 inches away, then let his shoulder 'go' and his fingers can touch the wall (makes me feel quite queasy!)

His mood is also very low at the moment

My sister asked me if he'd ever had a complete health check - he's been seen by lots of different specialists (psychiatrist, continence, OT) but they've all been looking at one particular aspect of him. She's just had a child at her special school diagnosed with marfan's and was worried about the similarities with ds

Of course, I have now googled marfan's and freaked myself out! Should I be worried about him (or any more worried than I already am ...)

OP posts:
EllenJane1 · 28/03/2011 18:08

Generalhaig, I know nothing about Marfan Syndrome, but I would say if you are worried there is no harm going to your GP with a list of concerns and ask to be referred on to someone who will be able to, hopefully, put your mind at rest.

If you want specific Marfan advice I'd post with that in the title so anyone with any knowledge will see it.

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