toe walking/spastic paraparesis

[boncebouncer]

Hi all,
wonder if anyone has any experience of this to share. My 8 year old has been receiving botox treatment for this for a year now. It's helped, he can now put his heels down, although he doesn't do that much when barefoot.
The neurologist is now querying whether we should also be using casts - I'm not keen. I've gleaned the impression that it's a lot of hassle for the wee chap without any great long term benefit.
But, I'm concerned about how the whole thing is going to play out as he gets bigger and heavier. He has good mobility and would definitely come in at the 'mild' end of any spectrum.
-x

[nightcat]

What's your ds condition? Which hospital do you go to? Does he have any other neuro symptoms - also, was it something that he was born with or got progressively worse?

[boncebouncer]

condition is just lower limbs, although not good posture. Attends Yorkhill. MRI all clear.
He did start walking with a heel-toe gate but progressed to go up on toes somewhere around 2.5yrs, they say he has enough tendon but the muscle is over active, so grips the tendon.

[nightcat]

My ds was prob worse then yours then, as he kept tripping over and was described as tendons stopped growing + muscle wasting and he also had other neuro symptoms like poor balance generally + speech problems.
We went to Sheffield as there is an awesome neuro dr there and would you belive gluten free diet released all tension in his legs and improved his health/movement/brain no end.
The dr published 40+ research papers and is a world-renowned for the link b/w gluten and neurology, he calls this type of condition gluten ataxia where the gluten antibodies damage the brain.
My ds was getting worse and had very poor prognosis, so it was clear that there was something causing it, not sure if this helps you in any way, but we had been to 2 drs before going to Sheffield and they had no advice whatsoever, short of putting him in a wheelchair when/if it got too much. So this expertise is not around everywhere. Not sure if it's something you would consider, but if you want more info, please let me know.

[boncebouncer]

Thanks nightcat, that's really interesting.
Do you know the docs name so I can look at his papers?
When I say MRI fine, I mean that's what hosp said, but he has similar, if milder, to your ds in some ways ie poor balance/falling, v.late to toilet train (like he can't hear his body) some attentional probs although he does v.well at school - I'm the only one who seems to consider it all part of the same package iykwim?
What age is your lad?
Glad you found such a successful solution for him -x

[nightcat]

mine is a teen, have a look here, drs name is MH (first listed on the first paper), also here

[anonandlikeit]

ds2 has mild spastic diplgia.
He has used Splints since a couple of yrs old. As well as keeping his foot in a good position they moulding on the sole also give neuro feedback and encourages better positioning.

Did he mean your ds should be in casts or use splints, what is his physio's opinion?