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Need information on a few things please????(6 Posts)
Hi all, hope everyone is ok??
Anyway, i have just come back from an urgent appointment with dylans physio as some concern about hios constant falling over which is appearing to get worse rather than better, and in a mild form they have said that he is having a relapse.
Anyway, the physio has now confirmed that dylan has Axtaxia and proprioception, of which they have ummed and arred about for a while which has also confirmed my suspicion about his abilities in the future???
They have now decided that dylan needs to see a hip specialist, who has surgeon in the title Also thay are getting him some new afo's, one for each leg, and both more restricted than his others.
This is where i need the help??? She has decided to apply for a special all in one suit of which costs a lot of money and the application process is long. She referred to it as a "second skin" or if unavailable a "tyco Lycra Suite"
Has anyone got any experiences of these things, if so your input would be most valuble to me as can't get my head arond dylan having to wear such a restrictive undergarment, i really don't want him to be uncomfortable, but she feels that due his what she has classed as pretty severe axtaxia, it would be really beneficial.
At the moment, they have loaned a weighted jacket with wrist and ankle bands of which he will come home with today!!!
Sorry to rant, i just feel like so much is being put on my little man, and i know that it is to help him, but yet again, it's something else to add to the already starable things that he has to put up with on a daily basis.
Sorry - I can't help Butty, so will just bump it for you.
don't think we have chatted before but my dd is 5 and has cerebral palsy diplegia and has been wearing a lycra suit since she was nearly 4.
at first dh was a little sceptical about the suit BUT now a year later the improvements in dd physical abilities are being noticed by everyone.
Downside, dd hates the suit with a passion and is a happy bunny atm as she is not wearing it due to a flair up of her excema and that she is getting measured for a new suit next week(they grow out of them so quickly-or at least dd does)
the daily washing and drying is also a pain but overall i think it has been worth it
Good luck xx
My dd had a lycra suit. and the school said it really helped her she has afetoid CP so it helped to control the extra movements. We had some problems as it was VERY hard to ge on. When she out grew it the phisio decided to trial her with one that comes in pieces so that you can add bits and take away.
DD loved wearing it to begin with but then it got too tight, I think it is something well worth trying.
we used to have to see an orthapeadic surgeon, dont worry about the 'surgeon' bit [wink[
Thanx ever so much for your messages
Me and DP are sat here now listening to all the comments, and at the end of the day, you all sound very positive, i don't want to sound so negative, all i want is the best for my son, and in time i hope he get's the best available.
It just seems to be such a long process and alos a lot of money, and although the suite is funded, i feel really hopelesss, as oi could never ever in my lifetime afford ther thingds that he really needs in life, and to me this is the downfall with special needs, i just can't afford the best in life for what he truly needs.
Thanks again for your positive vibes.
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