CP / Motor disabilities - thoughts and experiences on 'bad standing' please

[herjazz]

Have been doing loads of standing work with my dd over the past couple of years. She can stand for a few minutes either leaning against something or holding onto something

school physio is pleased, conductor is pleased

however, another physio assessment has commented that standing isn't developing in typical, controlled way. She isn't using her hip muscles, rather locking her knees and making her legs stiff to maintain stance. This is putting pressure on her hips (she's under orthoptic review for hip displacement - ok for now but they are keeping an eye on her)

we have a frame which is encouraging her to learn to stand in the correct way - ie by using her hip muscles, allowing them to build up slowly

Just wanted to know whether this strikes a chord / sounds familiar with anyone here. How did you deal with it? Did yr dc get over it or did you not push standing activites? I feel I'm getting somewhat conflicting advice from professionals and feel a little bit like my little bonfire of joy at her standing progress has been pissed on a bit - if that makes any sense

TIA

[herjazz]

I mean allowing control of the hips to build up - not like she's getting bulky masses of muscle

[2shoescreepingthroughblood]

dd only stands using a stader, so sorry can't advise

[herjazz]

were you ever encouraged to do any free standing type stuff with yr dd at all 2shoes? You used to go to conductive ed didn't you? Ta

[lou33]

the problem with locking knees to stand is that it makes the thigh muscles tighter and can run the risk of a permanent inability to straighten the legs, therefore walking is less likely to ever happen and a wheelchair is more probable

it also means the hips are not being used as they should be, so are weaker, which increases the chances of hip dislocation, and also the spine is thrown out of line, and can cause scoliosis

[herjazz]

yes thought as much lou33. Wonder how great that risk is

Eeeeek. Think we'll be using the frame A LOT more

this is why lots of physios are down on CE innit?

[lou33]

ds2 is8, nine in feb, his legs are locked now, so he wont be able to stand without his frame, or walk at all

he is now being treated wrt managing his cp so he doesnt get tighter, rather than trying to aim for independent mobility

his pt is bobath trained, rather than peto

the way i understand the difference is that peto aim to get the person doing something regardless of how the end result is achieved, or if , for example the positioning of the legs for walking, would be also strengthening the hips, if that makes sense (as long as they are walking thats the main thing, not how)

bobath tend to work with the whole body, and are more focused on getting everything aligned and positioned as correctly as possible

i dont know if i have explained it very well, but i know what i am trying to say

[TheCappster]

dd (8, cp) likes to practice 'walking' between our two sofas; recently we got a copy of a letter sent to one of her doctors which described it as an 'uncontrolled stagger with no functional use'

it is, yes, a kick in the teeth. But I think we knew that, deep down, and we need to focus on strengthening the right muscles rather than getting all excited because she can propel herself unsafely across a room

I understand your frustration, but I think sticking with physio advice is the only way to go. Sorry.

[TheCappster]

ah yes just read lou's post

we tend to be Bobath in approach after early sessions with their therapists which were wonderful

they won't fund them after six years old here tho

[herjazz]

yes that makes sense - thankyou

dd is only 4 and we are dabbling in everything. She has bobath at school but her physio isn't that against CE

She is mostly low tone

Don't really have huge expectations re mobility / independence. I dream of her using rollator / walker round the house rather than running in the park - iykwim

[herjazz]

ah cappster that would have broken my heart too I think I'd be DELIGHTED with uncontrolled stagger but completely see what you mean. Obv don't want to end up doing more harm than good

[2shoescreepingthroughblood]

we di do free standing(well with her using a ladder backed chair, but tbj she couldn't do it for long or on her own.
a stander allows her to concentrate on something else

[TheCappster]

yes because if you don't isolate the right muscles early it all goes to pot

I think her early physio is what led to her being able to walk with sticks; we thought it would always be a frame, so we're pretty damn happy with that

[2shoescreepingthroughblood]

lou, I found CE different, they seemed to want it all done perfect.
dd could roll over, but they wanted her to do it the perfect way!

[lou33]

thats interesting 2shoes

i think the general average cut off point to be able to achieve or not is around the age of 7, so early intervention etc is very important

sadly it didnt work for ds2 but it does for others

[herjazz]

yes that's what we are doing at CE - with the chair

thing is - my dd is hating her stander now and having a right moany protest at going in it. Prob cos it is harder work for her cos its making her stand correctly

whereas she really loves leaning against the table et al

hey ho - cruel to be kind and all that

[lou33]

ds2 hates his frame as well, and his gaiters

[TheCappster]

as dd has got older she has tolerated things more, because she understands their importance

[herjazz]

I think our conductor is brilliant. She's v on the ball with correcting postural stuff with dd - providing just the right level of support / repositioning

I think where it slips is when we are doing it at home - obv we are not as good at making these adjustments / support and tend to be more 'Yayyy look at her standing - get the camera'

[lou33]

ds has an electric chair at school and a manual one for home

he also has a laptop for lessons as he struggles with a pencil and writing, and a chair from ot which gives him the proper support and positioning to minimise the spasticity in his legs and ensure he sits upright to keep his spine as straight as possible

[2shoescreepingthroughblood]

dd hates her stander
she uses it as her rebellion and kicks of when the school try to get her in it!! well she is 14

[HairyMaclary]

DS has just started walking, it is moving to being more controlled but I recognise the 'uncontrolled stagger with no functional purpose!'. DS has always liked weight bearing but his prob has been with keeping his heels down, I now notice that he is developing the typical 'crouch gait' with bent knees that he didn't have before he started walking. However there is no stopping him walking! It's really difficult as I can see wrong muscle tone developing before my eyes but cannot make DS not walk!

A bit off the point but I do get where you are coming from, we have always struggled with the balance of perfect positioning and functional use. HAve the same problem with they w sitting too!

[HairyMaclary]

The cappster - and others on this thread - have you heard about [http://www.footsteps.ltd.uk/ footsteps]. It's private physio and fairly expensive although they do have a charitable arm that can help with funding. It's bobath style physio and we have found it v useful in supporting what the NHS does. (NHS not entirely happy with us but willing to tolerate it!)

[HairyMaclary]

sorry - duff link Footsteps here

[herjazz]

that's v interesting - ta hairy
how old was yr ds when you started?

[HairyMaclary]

DS was 2.9 when we first took him, I think they only take them from 3 now though. It is hard work and not for everyone but for us and ds's type of CP it has been great.