Lycra Splints for people with cerebral palsy - Page 4 — Scope | Disability forum
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Lycra Splints for people with cerebral palsy

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Comments

  • Stayce
    Stayce Community member, CP Network Posts: 843 Pioneering
    That will be very exciting to go down in shoe size. Great that you can take advantage of the sales.

    Merry Christmas guys and happy holidays :)

    Best wishes
  • Stayce
    Stayce Community member, CP Network Posts: 843 Pioneering
    edited March 2016
    Hi all

    Hope all well

    Noah - How are things with your lycra splints? How did you get on with your review?

    Georgie - Did you manage to get new lycra splints set up through an adult service?

    Best wishes

  • Georgie
    Georgie Community member Posts: 31 Connected
    Hi Stayce

    I haven't got any new lyrca splints yet, but if the Adult service haven't rang me to make an appointment by the end of next week I'm going to ring them and chase it up
  • Stayce
    Stayce Community member, CP Network Posts: 843 Pioneering
    Hi Georgie - Hope you get them soon. Did you get referred somewhere new local to you?

    I pick up new ones myself tomorrow

    Best wishes
  • Georgie
    Georgie Community member Posts: 31 Connected
    No I haven't been referred anywhere else
  • Stayce
    Stayce Community member, CP Network Posts: 843 Pioneering
    edited March 2016
    That's good must have made things a lot easier then, this time at least.

    Hope you get them soon

    Best wishes
  • Georgie
    Georgie Community member Posts: 31 Connected
    Thank you. I hope your new lyrca splints are OK
  • Stayce
    Stayce Community member, CP Network Posts: 843 Pioneering
    Came across this really nice news story for anyone following this discussion on CP footballer and use of lycra splints

    https://www.dmorthotics.com/news/dmo-glove-assists-future-england-cp-football-star/
  • Georgie
    Georgie Community member Posts: 31 Connected
    That's a great article, and shows that anyone can take part in sport with or without a disability.
  • Noah
    Noah Community member Posts: 425 Pioneering
    Hi Stayce, 

    Sorry for taking an age to get back to you, I'm still getting use the new Forum layout, and life has been extremely busy recently.

    Yes my review at the RNOH was a success, unfortunately we couldn't get the lyrica splints to work with both my feet. So it has been decided to design some new AFO's which hopefully will be less bulky and allow more function. I'm really impressed with the team at the RNOH, so professional with a very 'can do attitude'. 

    Even tho the lyrica splints have not worked for me, It has not been a waste of time, as I have learnt how a compression garment can improve function and sensory feedback, and I'm hopefully we still maybe able to get them working with both feet in the future.

    In the mean time I have been looking for some regular lyrica compression socks that I could wear with my AFO's. Any suggestions on that front would be very welcome.

    Hope your keeping well, did you get a hands free assessment? Have things improved with your RSI? I would be most interested to know how you have got on.

    Georgie - Have you manged to make progress with you lyrica splints yet? I know how frustrating it can be to have to wait so long, my advice is keep emailing and calling the hospital and explain how important it is to you and how by not having them is effecting your quality of life. Try and build relationships with those that are in charge of making the appointments so they know exactly who you, and why you need that appointment so much, and they know you, not just your NHS number!

    Noah
  • Georgie
    Georgie Community member Posts: 31 Connected
    Hi Noah,

    I've not heard anything more about my lycra splints, and the Young Adult Team have discharged me as I'm now 25. I'm trying at the moment to find the right place to phone about getting new lycra splints, but am not having much luck. I need to also find out how much they will cost to have made.

    Georgie
  • Stayce
    Stayce Community member, CP Network Posts: 843 Pioneering
    edited April 2016
    Hi Noah - It's a shame the lycra splints have not worked for you, they really don't work for everyone, but I agree with you if you don't try these things you miss out on learning key lessons about CP as a condition in terms of sensory feedback, increased function with tonal changes. 

    Perhaps you could use the lycra splints just @ home for few hours as part of physio regime to help with lowering tone?

    I wonder whether DMO could make you a thin Sock sleeve that you could wear in an AFO - worth asking @ RNOH or email DMO and enquire as I would think this would be quite a common request. 

    Is the main problem that you need more support than the DMO socks give you - if it is and you really want to be able to wear lycra splint I would have a look @ second skin (they make much sronger garments but they are extremely expensive)

    In terms of compression socks I will do some further research, I have a pair of 1000 mile compression socks for long haul flights from physio room which would do a  similar type job for you. http://www.physioroom.com/product/1000_Mile_Ultimate_Compression_Socks/2242/38252.html

    Georgie - Keep chasing them. May be worth getting in touch with patient liason service @ the hospital you were originally at - should be on their website. As in much earlier post  a DMO lycra Sock would roughly cost €300 privately.

    Hope this helps. Keep in touch, let us know how you get on.

    Best wishes
  • Georgie
    Georgie Community member Posts: 31 Connected
    Hi Stayce

    I've left a message with the physio I was with until I reached 25. I'm hoping he will get back to me early next week.  If he doesn't, I'll try him again on Wednesday. If I don't hear anything more after that I will try and get in touch with the hospital I was orignally with. I'm not in desperate need of new lycra splints just yet, but it would be good to know who I need to get in touch with when the time comes, and with what's happening in terms of me getting funding for them or having to pay myself privately.

    Noah, I'm really sorry the lycra splints didn't work for you. I hope you find the right garments to support you in the very near future.

    Georgie
  • Noah
    Noah Community member Posts: 425 Pioneering
    Stacye - I will defiantly do some research into second skin. we were only able to get the DM Orthotic lycra sock working with my left foot, even with ankle braces, insoles and extra straps we could not get enough lateral support for the right foot. 

    Georgie - Your GP should be able to advise you on how you can get a referral to your hospital orthotic department, they can probably refer you directly, although sometimes you have be refereed via an consultant. I would recommend the RNOH in London, I have experience of several hospital orthotic departments and RHOH is the best I have been to so far. Very high standard of care, and staff that are focused on trying to achieve the very best possible outcomes.    

    Noah
  • Georgie
    Georgie Community member Posts: 31 Connected
    That's great, thanks Noah. If the physio I had doesn't get back to me by the end of next week, I will certainly ring the doctors and get an appointment with my GP to try and get referred to the hospital.

    I'm sorry the lycra splints didn't work well on your right foot. I hope you manage to find something more suitable. I've never had lycra splints from second skin before, so I'm not sure how good they are.

    Georgie
  • Stayce
    Stayce Community member, CP Network Posts: 843 Pioneering
    Noah - I have not worn second skin either but have done a fair bit of research for an article I am trying to get published and have been to a second skin demo and held garments definitely appear stronger - have a look http://www.secondskin.com.au/Content/Products/Dynamic-Splints/Lower-Limb-Splints/Foot-Splints. But as I say extremely expensive. RNOH don't have contract with second skin. 

    Georgie  - since you know DMO works for you, probably best see if you can get referred as Noah suggests unless your physio can help sort it out for you.

    Best wishes
  • Georgie
    Georgie Community member Posts: 31 Connected
    I'm definitely going to stay with DMO because their splints work really well for me. Hopefully my physio will be able to help with a referral.

    Georgie

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