AFO Braces Nipping

JDWilson

Why do they make the standard AFO brace Too high on the leg? They are OK while child is walking But When child sits on the floor they nip. When child rides her Trike they nip. Has anyone else found this? I carn't be the Only 1. Why carn't they have a softer top on them?

Noah

Yes couldn't agree more - AFO's are often so poorly made. think there might be technical reason for the hieght - was explained to once but can't remember.

JDWilson

They said carnt fasten on a muscle because it stops it working. They carn't expect kids that can move to sit still though can they? Physio has taken them to see if could take a cm off. Wele see how this goes. I no they are to do a job but after all the time she has worn these youde think theyd be better. She has worn them for 9yrs now. It makes a change to get a pair that fits well apart from the nipping lol. The last pair she got her foot hung off the side so they tried to ajust it. The next pair we got was too wide on ankle providing no support I could get my thumb between brace and ankle. Another physio was so shocked she told me to Plant flowers in them theyd do a better job caue they were no good for my daughter. We waited 6 months for a new fitting. When they make a dreadful job of them why carn't they admit it and get another pair made? I was told they cost

Noah

Can relate to everything you have said, the amount of AFO fittings I had when I was younger was quite incredable, did eventaully get a pair that fitted perfectly.

Have you heard of a SAFO? http://www.dorset-ortho.com/product-safo.php

Somthing that one of my physio's wanted to try me in but never did get the chance.

JDWilson

Samantha is 11 she has spastic Diaplegia CP. She has self leveling pedals The problem she has is her feet keep slipping off the pedals. It sounds like we should try different pedals those racing ones sound Good.The swimming Yes she will be sticking with it She loves it even when her legs are so sore and tired She has lots of badges and I would like her to enter one or two races It's the one thing she is Really good at. We haven't tried dance or music therapy but have never stopped her trying anything.She has been abseiling & canoeing She has entered 3 races on her Trike and raised over

Noah

I've also got spastic diaplegia, I'm very impressed. when I was 11 my mum was a huge force in my life, she never accepted that anything was impossible and always sort the best possible care, sometthing that I didn't always appricate at the time. I'm sure you will do this as you sound like a really good mum, when it comes to surgrey make sure you get a second oppinum. I had surgey at about 11 or 12 and it was a huge success, I put it down to again, my mum insisting that I go to GOSH in London and I was under the care of Dr Fixen. Miss D Eastwood is now top of the field for otherpeadic surgey on children with CP at GOSH.

My Loacl consultat wanted to do far more extensive surgery on me then the consultents at GOSH. Some of my friends under the loacl consultant were not as successfull with their op's. Something that I remember Dr Fixen saying is he didn't want to play all his cards at once but to do things in stages. I'm sure Samantha will do great, remaining active and determined are the two very importent keys.

I read an article sometime back about a young person with CP who was a very dertimined swimmer and practually overcame the symtons of CP through swimming. if I find it will post it on here.

Noah

You've probably seen it before

http://www.cerebralpalsy.org/treatment-and-therapy-news/swimming-as-cure-for-cerebral-palsy/

Amazing story - very tragic end tho.

JDWilson

I hadn't seen any written benefits from Swimming and found that really interesting. Samantha was in the water at 4months She swam before she could walk. How does CP affect you? Can you walk? Do you need a chair sometimes? What kind of operations have you had? I Hope I'm not being Too nosy? It's hard to know what to do for the best when you see your child in pain every day. We are going to Newcastle next wk the surgeon is looking at 3 ops in 1 go Breaking and realining the bone in the top of the leg something in the calf I think to do with muscles or tendons and something in the heels to move the foot to a better possition. I'm not sure exactly because it has'nt been explained properly Yet.(22nd hopefully get some answers) Did you wear Braces a lot as a child? did you end up with Bunnions? Samantha has on both feet. There is also a second op Suggested but Ive not look at this yet. Decisions are hard If they said without this op she Won't walk I would get it done. But I would find it so hard to live with If my decision meant she didn't walk again. Surgery should have improved since you were younger But They do get things wrong. If she goes for op She'l want to get into the swimming pool ASAP after so that would help build muscles again. So much to find out and think about before any decisions. Samantha wants "normal" feet as she says like everyone else has But doesn't want any ops. Even with the Best Care and Surgeon she will still have CP But it's how it will affect her now and later in Life. I'm sorry to put all this on you operations is a Biggie and we started off on Braces nipping. :-) Did you have pain when you were younger did surgery help ease this and what are you like now? So many Questions. What does the Future hold How long is a piece of string Does Anyone really know? All we can do is try our best to find out as much as possible and Hope for a little Luck too. I'm sure things will be OK She cetainly is Determined and I ask lots of Questions LOL.

JDWilson

No Ive never heard of that before. Il have a look. Samantha has only ever had Fixed AFO's they wanted her to try a Lycra suit but she knows her own mind and they thought she wouldn't co-operate. I got her braces back off physio yesterday they are a little shorter and are not nipping her legs at mo X She rode her Trike to school today with them on I'l see if she still has them on tonight. We have to go to see a surgeon next wk about possible operations. She has got contractures and deformatives But she can still walk a little She is very active as well. She has pain every day in ankles and her feet turn outwards they slip off her pedals on her trike but won't go into straps to hold them. She is a active swimmer which helps pain and she takes Baclofen daily. Thankyou for replying it's so nice when someone understands your Moans. XX

Noah

Wow - remember my trike days well, and when I first got my pashley - boy could i keep my feet on the pedels! They put straps on and had the same problem, think in the end they fitted adult size peddles that they use on racing bikes, the type lots of little spiky bits on them the soles of my soles would grip. There is probably a technical term for them! Keep going the swimming it really does work. Have you tried any kind of danceing of music therapy? (Look at my other posts) a very interesting article, I'm 28 and just started doing some DMT and it is making an enormous difference.

Don't give up , keep going it will be the making of you :-)

Noah

Is it possible to private message or talk on the phone, as there certainly is alot of questions there!? I'm available to have a chat and try answer your questions tomorrow late afternoon/early evening.

ScopeHelpline

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Noah

There is loads I can say in reply to your post! All my ops were on my feet think I had 2 biggish ops, followed by a serries of ops where they positioned the feet and replasted, mainly moving/spliting tendens. extremely painful precdures, but I think the pain effected the people around me more than me! Laughter is the best pain killer! Rememeber that someone with CP has not known any different. The body has amazing ways of adapting. I know it sounds cruel but if you push through the pain your body is offten stronger for it, to ilerstrate a crafts person devolops hard skin on there hands and tasks are easier, but to start with they are sore and painful.

Recently I was in london discusing aditional surgery, to try and further correct the feet/knee deformities and improve my gait. Although in consultation it has been decided that, yes they might be able to straighten the feet but they can't change the brain. Since that appointment I have been working very hard on my physio and movement theropy which has been helping my balance/hand eye coordination tremedalously.

Yes I can walk, I realy very heaviely on my orthotic boots and using two sticks helps take some wieght off my joints while giving me balance and also helps keep me more upright. Yes - probably should use my wheel chair more just to reserve my energies and look after my body, but very reluctent.

Sam sound amazing, keep encouraging her with the swimming, she will go far. Just an idea to help with the brain connections further, when she is swimming what about listening to music, some types of music are supposed to help stimulate brain connections, I leave you to google that one!

Appricate decsions are hard for you both - all best on the 22nd

JDWilson

Thankyou so much for replying I'm sorry it has taken a while to get back to you. The information you gave will help Thankyou. It sounds as though with CP there are always going to be issues to deal with whatever the age the person becomes. It does sound as though there are going to be operations Samantha will need whether she starts now or later. The music when swimming sounds good If she was in therapy or something. Samantha goes to swimming lessons on a Tuesday and Swim Club on a thursday so I don't think they could accommodate the music It does sound really good though. I could see her swimming really fast to Bat out of Hell or something similar.lol. During the Summer she went to an outdoor pool every day for an hr She loved it.There was so many Questions I asked and I was worried I was being too nosy. Thankyou for answering so many of them. There is a group on Facebook called helpkidswithcerebralpalsy I try to get on there a few times a wk to check what's going on. If you post something on there someone always tries to reply and help. You would be a good sorce of information for the parent's It has been set up by a woman called Lesley Bell. Have you heard about this Selective Dorsal Rhizotomy? It's seems to have been in the news a bit and twice this last 2 wks in Take a Break mag. Ive found out a bit but it sounds as though Sam will proberbly need orthopedic surgery as well due to her contractures and deformatives she already has. So much to think about Better slow down and start trying to take one day at a time and enjoying Samantha's childhood while she still want's me to. Worrying is not going to change the outcome of anything.

Noah

No i have not heard of Selective Dorsal Rhizotomy, it sounds rather comulicated, from what I've read it doesn't repair the brain damage. I would imagagine it is a possible route only for the very extremely cases where walking or standing has not been achived to any degree at young age. On the subject of deformities/surgery and movement, it is importent with any surgey that you don't comprimise movement/including protentional movement in a bid to reduce deformities.

Plus with my own body, without the lumpy bits on the side of my feet, they may look un attractive, which I guess is more of an issue for a female, but without them it is likley that I wuld not be able to walk at all. I feel it is like my feet have grown extra bits to help obsorbe my body wieght that i wear more to the outside.

It is excellenet that you have had the botox treatment first, as this does give surgens a much better idea as to how the body may respond to a more permant precurure. I have had botox on my eye muscels which are also effected because of my CP and this has proved to be very effective, and have provevided the professionalls with extra information. Botox can help repositioning without as many risks as surgey and gives everyone an idea on how the brain responeds.

JDWilson

Hi Noah That is good advice about not doing COSMETIC operations. The thing we all want is to get around however that may be.Looking good is not the Priority. We have been to Newcastle on Fri They spoke to us about the operations proposed and took X-rays. Not Great. Ankles in a bad way already they are collapsing If we don't operate to secure the feet she will rely on her chair more and more. That's what they said. Her tops of legs turn in so her knees knock together her lower legs turn out and so do the feet. They have said she needs Bone surgery to correct the deformation and secure the feet and muscle and tendon op to function better. The operation is in the New Year and the 2nd op will be 6 wks later. They are confident that once both ops have been done the Pain she is experiencing daily will reduce. Theyve said it's better to have it done Now rather than later so no more Damage is done. :-( It's going to be really difficult but hopefully she will improve afterwards If we were to leave her We will have to watch her deteriate? On a possitive Note We have found a Whizz Kids Club that is starting up in Nov Disabled children will meet up once every 6 wks to do Fun things. Samantha has never really mixed with others regularly and she already has a friend who is going too. Think this will help her Fit in.