Does anyone have any experience of dynamic lycra orthosis....?

[lourobert]

My ds was seen by his Physio recently who said she thinks he will benefit from one of these lyrca suits. the aim is to give extra support to upper limbs but also the lips and thighs.

Once she told us he would benefit she then said PCT wont fund first one so we will have to fund at cost of £500.

Theres a 6m waiting list to be assessed.

Has anyone heard of this lycra suit or actually had any experience of??

[MommyUpNorth]

We just had our first one for our son (19 months). It's a full body one - short sleeves, long legs. Unfortunately we've only just got it, so I can't really comment yet on if it works or not. The first few days he's been in it, he has sat more upright, and has stopped some of his 'extra' movements, but I think part of it is that he feels funny wearing it and therefore doesn't really move much at all!

The OT & PT very highly recommended it though, so I'm hoping to see some results soon. His goals now are to stand against the sofa for 10 seconds unsupported, take finger foods to his mouth successfully, and more vocalization.

We've had it completely funded by the nhs though and didn't realize that it costs so much!

[2shoes]

dd had one.
no way would I pay
the nhs should pay.
thay are very tight fitting and not always right size. so no way would I fork out £500.

[r3dh3d]

We don't have a full body one - one arm only and now planning to get shorts. Very beneficial for DD1. PCT paid. Would agree they are v tight and grown out of really quickly.

[lourobert]

Im ttold that local PCT wont pay for first one but will continue to pay if it proves to be beneficial and proves that it works!!

[hamsterlover]

depending on your ds diagnosis then REACTmay be able to help. I know that they have funded these suits in the past. Not the point I know, as if a child requires it PCT should fund it but if they can help out...

[hamsterlover]

depending on your ds diagnosis then REACT may be able to help. I know that they have funded these suits in the past. Not the point I know, as if a child requires it PCT should fund it but if they can help out...

[hamsterlover]

oops sorry!

[Romy7]

DD2 has one - covers trunk and thighs. It's reinforced on one hip to try to straighten her up a bit...
in theory it was suppose to be promoting fine motor skills and upper limb use, but in reality it seems to have been most beneficial for gross motor.
she finds it quite difficult to cough when she's wearing it, so we don't put it on if she is chesty...
ours was nhs. physio and OT used giant tubigrip first to 'test' whether it would help - a huge double layer from neck to thigh like a sausage (with armholes natch) - maybe suggest this as a test instead of forking out?
if you do go for the suit, ask them to take into account which 'handed' primary carer is, as the between the leg zips are v tricky...

[r3dh3d]

Agree re: the tubigrip - had quite forgotten to mention we did a trial run with tubigrip and they only forked out for the real thing once that was successful.