Physio for kids with CP.

[Ozzie Dave]

Ok its a long shot but anyone know much about physio for kids with very high muscle tone for kids with CP, our daughter is on 3 monthly Botox injections and has had hip reconstructions. She is non-amblatory and has problems with feet turning. we have had suggested that she rides a bicycle to help her legs, but this is impractical due to her disabilities, I am thinking of making something for her, what should I do to ensure i do not cause further damage to her legs!.
Yes so I'm hoping there is someone out there with some specialist knowlage that may know answers as her specialists seem unable/unwilling to provide timely or sensible solutions.

Thanks
Dave

[Fozziebear]

Hi, I'm sure you NHS physio will have all the correct info for what to use. How old is she? We had a foster child with CP, had a set of exercises for each day, used to do them together. He also had an adapted trike that he could use, different pedals etc. I feel for you with the Botox, not great to have, but works really well a few weeks after. Does she need a hand spiker splint? I ask as I have a spare

[eric twinge]

Ozzie Dave said:

Ok its a long shot but anyone know much about physio for kids with very high muscle tone for kids with CP, our daughter is on 3 monthly Botox injections and has had hip reconstructions. She is non-amblatory and has problems with feet turning. we have had suggested that she rides a bicycle to help her legs, but this is impractical due to her disabilities, I am thinking of making something for her, what should I do to ensure i do not cause further damage to her legs!.
Yes so I'm hoping there is someone out there with some specialist knowlage that may know answers as her specialists seem unable/unwilling to provide timely or sensible solutions.

Thanks
Dave

Hi
My 4 year old daughter has CP and suffers from high muscle tone, but she has no injections. Her CP affects all 4 limbs. She can walk to a certain extent but no way could she walk without someone ready to steady and catch her.
I'm surprised that your specialists are unable or unwilling, we always seem to come back from appointments with papers etc with things to do. The main one it seems for us is her ankles which can be really stiff and need a lof work at bedtime.
I don't know where you are but our daughter attends here once a week:http://www.rainbowcentre.org/
Can't recommend it enough and she has come on leaps and bounds since attending.
She has got a trike that she uses when out and about in the park etc, bit big for her at the moment but she can't get into to much trouble with that, i think it does help her phsyio, she certainly whizzes about on it before she gets tired. Not cheap though, i think it was £1200 quid new, we got it 2nd hand for £200 i think.

[eric twinge]

Hang on, just seen you are in AUS!
Perhaps attending the rainbow centre in Fareham UK might be a bit too much!

[Ozzie Dave]

Hi Eric and Fozzie,
Yes correct, I'm in Aus,
Tara's situation is unusual her tone is so severe that her foot on one side has the ankle at its lowest point,where the ball if the foot would usually be. She also has had total hip reconstructions for the muscles pulling the legs out of socket, she therefore has only very limited leg movement on one side and at 10 has never been able to support her weight. we have to use a specially modified standing frame to put some weight on her hips.
We looked very seriously at the bike (over here they are about $5K! but often get equipment from Eu or anywhere direct), but more importantly she has very low tone for the top half of her body and hence is very floppy.
We work with a number of specialists here but a bike does not have the level of support she requires, and talking to specialists they seem to be great at recommending equipment to try, but not so good at finding one that is perfect, and even when speaking to them they feel you are a crank for trying to design something from scratch.
I dont work on their timeframes and limitations, they work in many months timeframes, I like to do things faster and look at things that dont exist and do it when it will help!
To my mind any unit she and many older kids with serious illness does need better stability (4 wheels) and a lower CofG, the push steer is essential,a better seating system, the rest is relatively simple , its more about ensuring the crank is correctly designed to 'grow' with her and alter as her needs change and it will help and not cause further damage.

I loved the photo, we have a beach wheelchair that allows us to take her out into the ocean here, we use it when she does surfing (look up disabled surfing australia they are fantastic)and horse riding for the disabled, and that same infectious smile lights up everything. We just want to be able to do something more often that will help her!

[BlackVanDyke]

A neuro physio might be useful, although they can be hard to find sometimes. I could swear that there's an outpost of the Bobath centre in Oz, they would be very high on my list of people to ask for input as in UK terms at least they pretty much wrote the book on physio approaches for kids with CP. The original Bobath centre is near where I grew up, had a couple of friends going there regularly for physio.

[Slink]

Ozzie Dave said:

She also has had total hip reconstructions for the muscles pulling the legs out of socket

I dont know much about CP but would stretching exercises for the bad leg not be good?

as if you stretch the bad leg out, it would not be to tight and pull it out of the socket?

i might be quite a bit out, but dont really know about CP, but it makes sense, especially as, if she has quite high muscle tone it must be quite strong.