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Why do less adults use orthoses than children?

Hi, I am an orthotist and I would like to ask the community about the use of AFOs, night bracing and other orthotic devices in adults with cerebral palsy. In orthotic clinics we see far more children than adults and it is a much greater difference than you would expect because children need replacement of devices more frequently due to growth. This means that a lot of people with CP no longer wear their AFOs, DAFOs or other equipment. If you have had orthotic devices as a child and no longer do, I would be very grateful to hear why you stopped (and would you have stopped earlier if not prevented to do so by adults) . Or if you had AFOs and now wear something less controllable I would be interested to hear your reasons for that too. I am not posting this for business purposes but because I want to understand the needs of the patients I treat better. Many thanks
Replies
Interesting post - I don't fit the demographic you describe there at all - just thought you might find that useful. I wore no orthotic devices as a child and now as an adult wear several orthotic devices which I find extremely helpful.
There are also many on this community that could possibly comment on this.
I think you probably see far less adults in your orthotic clinic largely due to there being no NICE guidance currently for people with CP over the age of 25 ( NICE guidance for over 25 with CP is not due to be published until 2019).
Thus everything an adult with CP does get access to is quite a struggle/ fight to get. In orthotic terms for an adult with CP it can take a very long time to get the 'right' orthotic for the user due to pain/ discomfort that some of these devices can cause. In my experience it requires an orthotist who really has patience and understands what putting a limb in its "supposed" optimal position can do to high muscle tone - this is why some will wear something less controllable.
Just my thoughts
Hope it helps
Best
I wore night splints as a child but, like @Stayce says, it's a real fight to get any kind of help in adulthood. The message I got was that once I stopped growing there would be little that could be done to help me. I was discharged from paediatrics as a teenager and left to get on with it.
My mobility has deteriorated significantly since my mid 20s and I had to fight to get any kind of help. What I did get was minimal and I ended up going from being an independent walker to a wheelchair user.
I remember asking about orthotics and whether they would be any help to me in improving my mobility but I was told that orthotics weren't suitable for adults with CP - so I'm really interested to read this post. It really shows how important it is for some kind of standard guidance to be developed. I'll be interested to read the upcoming NICE guidance.
@Stayce
Do you have any suggestions based on your experience of orthotics please? Who have you seen and what has helped? Thanks!!
thanks so much!
I think that part of the problem with adults with cp accessing orthotics is the lack of understanding of adult cp by gps and the lack of communication between services, when I was a child, my physio and consultant coordinated with orthotics, and I saw a physio almost weekly when I was school age, so any changes/problems were dealt with by her.
Luckily I now have relatively easy access to orthotics as my gp understands that I know my condition and refers me without me even seeing him, I just phone up with a referral request and it gets signed! I now wear an afo on my more affected side and a dafo on my less affected. I also have a leg gaiter and night splints to give me a good stretch out when I need it.
I had an orthotics review yesterday and the orthotist I saw was saying that there's a fine line between getting the right amount of support, whilst not limiting function. So getting the right orthosis can be trial and error especially for adults with cp, where energy usage and fatigue can be a major issue.
Do you know anything more about the NICE guidance please? How can we get involved in the user groups?
Thanks
Apologies missed your question - I would personally recommend looking into Lycra splinting as an option to look into (they don't suit everyone, but I have found them beneficial to mobility related issues and pain) - Perhaps Lycra leggings or socks and shorts might help?
See links below
https://www.dmorthotics.com/medical/products/
There are several companies in the U.K. which provide these garments, DMO being one of them - You can get these on the NHS I would suggest giving DMO a call and asking which NHS hospitals they serve that are nearest to you and then you can ask your GP to refer you to the hospital nearest to you that offers Lycra splinting.
Let us know how you get on
Hope this helps
Best
I fit these now to AFOs and KAFOs and it is great for people with weak hand strength.
You can also get shoes with a boa fastener at the back to make it easy to get into the shoes https://tomcatuk.org/twisters-online-shop/twister-boa-lacing-system/
Hope it helps!
Lucy
If anyone would like to add their adult orthotic experiences or needs, I would be very interested to read them.
The reason I am asking is because I am an orthotist and when I worked in the NHS, I used to see lots of children with CP but very few adults. I now write reports where I cost up the lifetime orthotic requirement of children with CP, so any information you could share (as adults with CP) would be very helpful - e.g how your needs have changed, what you had as a child and continue to find useful, what you didn't have but would now be helpful, what you had but no longer need and why, whether finding footwear a problem etc.
Please could I ask if any of you (as adults or children with CP) have tried the relatively recent new devices:
1) Mollii suit https://www.remotion.co.uk/
2) Hart walker http://hartwalkeruk.com/
Also, does anyone (as an adult with CP) continue to use a standing frame, if they had one as a child?
How about lycra garments?
Does anyone who relies on moulded seating within a wheelchair for postural control, also use a spinal jacket with lockable hip joints and thigh cuffs, so that they can have similar postural control outside the wheelchair? If not, would this be useful?
Thank you in advance.
If you use Facebook, there’s a group called orthotics in the uk support group that could help with the questions you have.