Is there anything else I can do???

[HairyMaclary]

Hi,
I've only posted a few times, but my DS1 (2.5) has spastic diplegia cerebral palsy. He's walking with a frame but the physio said today that the next 6 months are crucial to whether he will walk independently. She said that he might well be 'indoor mobile' with our sticks and seemed to imply that he will need aids for all other walking. The reason she's saying this is that he's noticably stiffening up and splints aren't really helping.
So - what else can I do to help him get maximum mobility. We have weekly physio and OT in a group and I do a weekly conductive education class. At home I do physio integrated into daily activities but no specific stretching exercises - have never been given any. any other bright ideas??
I just feel I cannot accept that he'll only be independently mobile indoors - I want him to walk and run with all the other children!!
Many thanks

Hi, my son has some mobility problems and his physio recommends lots of swimming. Its supposed to help loosen muscles. Im not sure if it would help your child, just a suggestion

HI Hairy
my ds2 has mild spastic diplegia cp, he is almost 5 now & walks independently with splints.
We were always told it was impossible (except for the most severely effected children) to predict how the CP would effect them long term. 2.5 is, I would guess & I know i,m no expert very young to make such predictions.
Certainly ds has friends who were not mobile at 2.5 who are now!

It sounds like you & your ds are doing loads already, we also went to weekly hydro sessions. Our local sn school has an outreach project & pre-school children can use the facilities. My ds hated it but I know it helped many children particularly with stiffness.
I have always done ds2's stretches in the bath. It does mean we have to get up early, but I do think it has helped maintain a good stretch & position.

Thanks for the replies, I will look into swimming type things. mymatemax - who gave you the stretching exercises, was it the physio? We have never been given any and I'm just starting to wonder if I should ask for them.

Yes the physio initially showed us the stretches, although it wasn't until he changed physio & she wanted to check exactly what we were doing as his calf muscles were very tight that I discovered we hadn't been doing it as we should be.
Basically lots of cupping his heel in hand & trying to get his heel at a right angle - extending his legs to try & get his knees straight etc, have a word with your physio see if she thinks its suitable for your ds.

We only started stretching in the bath when he started objecting to his morning stretches, now he just accepts it & actually likes it!

Oh he also loves his gymn ball, have tried exercises that he hated & it all becomes a struggle then.

Does your ds have night splints, not sure what age they use these from tho?

Thanks for your reply. We have just got night splints, last night was the first time he slept through with them on. The physio is coming this pm to check them out so I will ask her about stretches.

my son is the same, tho he has never been able to handle a frame, he is 6.5 now

have you discussed botox for the future?

ds had it a while ago, just one lot, and it did significantly improve hte amount his legs would straighten, tho sadly not enough for him to make adifference to walking/standing

now i am faced with the decision of whether or not to put him through surgery to see if that helps, as after the age of about 7 , there isnt really much to be done it seems

i'm thinking no to the surgery tho, because they have said at best he will be household amulant only, which mean a lot of pain for little gain, as he will still need his wheelchair for everything else

it's tough making choices like this isnt it?

are the physios on your area bobath trained? we used to get a 2 week intensive session once a year at the bobath centre in n london, which was good.

the pct paid for it

also does he have a standing frame?

stretchin and standing are the main things to get his muscle power built up

unfortunately ds gets really tired, he just doesnt have the strength to stand for that long

What about Riding for the Disabled. Our physio has mentioned it's benefits before for DS4 when a bit older to help with his muscle tone and balance,

Oh thanks Lou33, he loves standing and will do it at furniture all the time, but only on his toes and I'm worried that this is just adding to the tightness of his calves and he'll never get his feet flat again (it's only in the last 4 months or so that he has started going onto his toes, but now they are hardly ever flat).
The orthopedic (sp?) consultant has said not botox yet but it's a possibility soon. I'm not sure where I got it from but I thought that once you started on the botox route it always led to more and then to surgery so I was hoping to avoid that. I may have that all wrong though!
i know our physio is Bobath trained but I didn't know there was a centre, I was thinking of looking into Brainwave having seen others on here talk about it, but if the PCT will fund visits to the Bobath centre it's worth a try. thanks

I have just got the number for the RDA also and rung them! They will only take him when he is 3 but I have put his name on the waiting list - Thanks

i have given up on the rda after waiting 4 yrs and countless calls, and noon ever fucking gets back to me

i take him to a riding stable now and give hima ha;f hour walk out on a pony

the riding is esp good for cp because the way they sit stretches teh adductor muscles and the rocking motion of the pony relaxes the tone

hm ask your physio to get him a standing frame, he really needs to have his feet getting flat again

if that can be done by avoiding botox then obviously that would be best

botox doesnt always lead to more botox and surgery

ds only had one lot of botox, they think more is not of value to him, but he might have surgery as i said earlier

i asked the doc to keep a bit of botox for me but he wouldnt

HM, I remember the age of 2 very well for my ds, he was not given shoes and splints until a little older, 3yo i think. Until then he was still encouraged to stand as much as he wanted at the furniture, even to play with toys on the settee so he could stand for as long as possible. Try not to worry about him standing on his toes, my ds had terrible stance where he actually stood on the side of his foot, but the splints fixed that, and now he can stand in bare feet and it doesn't look too bad.

Have you been told to let him side step along the furniture?

The best thing I was told to do to help stretch leg muscles is to sit with his back against a wall or whatever, and keep his legs straight for half and hour or more (watch tv or play game) with his feet in splints for maximum stretch. We had gaiters to keep his knees from bending.

Lastly! My physio said that playing on the floor cross legged was essential each day, even if it was for only 5 mins, and to avoid W sitting.

Hard work, isn't it?

Glad the RDA link was useful. My DS is also 2 so perhaps I should get him on the waiting list. (I am shit scared of horses though so my mum will have to take him!!) Sorry your experience of them is so crap lou - are they just totally oversubscribed in your area?

oh yes the dreaded w sitting lol

i dont know wrt the rda, but you'd think after 4 yrs they would have found 1 space

i think they are just generally shit here

Thanks, am finding it very hard to get him out of the w sitting shape, I feel like a broken record and he hates being moved from it. I guess I just need to up the ante on all the standing, sidestepping, cross legged sitting etc and invent more games! Sometimes it feels so harsh to keep on at him about things he finds difficult but I'm seized with a sense of it's vital importance to his future mobility. (I am realising that I still need to work on acceptance of his condition and the fact that it's a life long thing!)

Hi there. My DS2 is 4 now, and is independently walking around inside and in our garden. He is absolutely useless outside in places he doesn't know and where there are lots of people. I started out by imagining him as a 'normal' child - running with his brother etc. Now I have finally realised that he is never going to be 'normal'. He uses a wheelchair outdoors, in fact he has just got a new one and is a whizz with it! (self propelling) I now accept that he will probably always need a wheelchair, but I am quite relieved as he has more independence IN it, than out of it. I am pleased that he is mobile around the house, as I can imagine that being a full-time wheelchair user would be a bit of a nightmare (although, having never experienced it, I can't really comment)
You will eventually come to terms with your sons disability and find your own ways of helping him to become more independent. (really sorry if I sound condescending, but I didn't mean it that way).
Good luck, and keep strong