does quadraplegia ever get better?

[needmorecoffee]

dd has no hand or arm function, cant roll, cant speak, cant do bloody anything.
Sh's nearly 5. Is that it now? Or are there maybe gains in function past 5?
Do I give up hope and stop wishing I had money for all these alternative remedies?

never give up hope
have you tried conductive education?

there's none available in this crappy city so no.
Read that Blue Sky July and feel crap that we couldt do all that stuff. Like I've let dd down and now its too late

oh you have not let her down. don't be silly.
I was never a great one for al that stuff, only lasted a year with CE, but it did help.

nmc if anyone has let dd down it may be the NHS/government whatever but not you, you have done and still do everything for her.

You are now blaming yourself for being unwell/too busy caring to get rich running a business/not lucky enough to win the lottery

not easy to flick a switch, but try not to blame yourself.

I wish I had an answer for your original question, but you are the one who normally answers mine and I feel rather clueless.

I know nothing about quadriplegia, but am guessing that the alternative remedies are a lot like the 'cures' for autism - people making money from parents' hope and dream, so don't feel bad that you can't afford them.
Does she get any proper OT through her statement?

all an OT does is make sure the chair seats her properly or she has wrist splints. Physio stretches her muscles.
There's never any aim to make things better.
She's going to be 5. Its a big number. And newborns can do more than she does

contact these people
we had to goe miles for our place.

ting is, I can't travel. Its too hard.

Is there any way of funding any of the alternative stuff that you DO think is useful via a charity or something? Family Fund or whoever?

Did she used to be able to roll or am I imagining it?

dd's doc says even the Peto place in Hungary wont take kids as severe as dd. They only take those who have 'some' movement.
I am sick of dd always being the most disabled everywhere we go.
Having a bad day

I've no advice I'm afraid, I wish I could help you . I did google and find something called Mytobii which is a communication device that works with eyes only, would something like that help her?

we're looking at one bullet. Not sure yet if dd could use it as it requires control of the eyeballs. She has a squint and her head flails about.

Not sure about the squint but the write up said it was designed not to be affected by large head movements.
Can her squint be corrected?

You know my views on this nmc, your dd is very much like ds, Conductive Education, as great as it is for some kids has done very little if anything for ds (quad dystonic cp, for those you dont know)

Only thing that has DEFINATELY made a difference is large doses of sinemet(co-careldopa), what dose is she up to on that now?

Also ds has rubbish head control but the mytobii is wonderful for him, it tracks the light in the eyes so a squint would not affect it.
also we tend to "jam" ds head in his chairs headrest with a strap to stop it falling forward, works a treat.

only downside of the machine is that it only works of mains power.
on the 19th jan we are having our second trial of another system, the dynovox eyemax, they would prefer he had this as it runs off a battery with a 6-8hr life.

the first time we tried it was nowhere near as good as the mytobii, the strap round his head was pushing down his eyebrows and affecting the pick up, could only get it to work if i held ds head in place under the chin, which kinda defeats the purpose!

i'm keen to see if we can get this one to work as it would be more practical so i have bought a headmaster collar to support his head without straps/hands.

NMC, I am reluctant to post this, because I don't want to give you a false hope when I know nothing, but a google search brought up this charity in Sussex:

www.scotsontechnique.com I don't know the cost. Don't know much about it at all, but there is testimony on there about a child who sounds similar to how you describe your DD, and they have seen improvement.

think its over £1000 a week and you have to do 5 weeks in the first year, 4 weeks in the second? initial consultation costs £80.

someone i knew did it, its very intensive you're supposed to put in 2 hours a day, she was never sure if the therapy was working or not though and i think she stopped going after a bit.

oh and you need a lot of towels!

DS has an alternating squint and was able to control a mytobii.

We're hoping to try a dynovox eyemax as we've currently got a dynovox. Would be interested in seeing how you get on glittery.

I saw the scotson thing but its so outside our price range (which is about 50p) I haven't even called them. Problem with all these things is is it time or the therapy that makes the difference? With moderate CP stuff can help as you have something to work with.
Glittery - dd is up to 100 mg's of sinemet. She's more bendy , less stiff and her hands are no longer stuff clenched by her ears. We have seen some attempts to move her arms but only if she's flat on her back. Should we go higher or should we have seen something more useful by now?
dd's squint hasn't been mentioned and we haven't seen an eye doctor for 2 years. Keep meaning to phone them but its like no-one gives a shit about her eyes and vision. If a normal child had a squint and poor vision you'd be tripping over doctors I imagine. I have to battle for every bloody thing as its like they have written her off.
The LEA want to start her witha liberator that uses a head switch cos its only 7K compared to the Mytobbi. They wont let her have an eye pointy one until she proves she cant use others (no mention of her getting dispritied) or prove she can use the Mytobbii but ffs, how can she if we don't get to try one?

Stem cell therapy. I reckon five years and they'll be ready to make some proper improvements for those whose bodies are refusing to co-operate. Can't guarantee it, but that's the speed at which it's progressing. Same sort of timescale for brain-imaging robotic controls that sense what the person's thinking.

The scientists got very excited about the Nintendo Wii as they realised the games manufacturers are WAY ahead of them in getting computers to do things with only a tiny movement from someone. Instead of spending a few billion on a supercomputer to do some testing of this, all they had to do was buy 7 Nintendo Wii computers, wire them up together, and it did the same job (embarassingly for them).

Is there hope? Yes. I say the games computer people will find the answer first.

NMC, squints can be sorted easy peasy, I had mine done at 14 and it was the best decision I made. Press for an eye appointment, if the squint could stop her using a communication aid the docs should sort it. And you haven't let her down, the government has, you seem like an amazing parent from reading your posts.

NMC, why wait for them to organise it, you can contact the companys yourself to arrange a trial, if they ask you can just say your considering fundraising for one yourself, at least that way you'd know whether to fight for one or not.

Inclusive technology and Smartbox both do the Mytobii and you can contact Dynavox direct. to be fair i think the Mytobii would accomodate headmovement more than the Dynavox, that seemed a bit temperamental to me.

www.inclusive.co.uk/catalogue/acatalog/mytobii.html

www.smartboxat.com/mytobii.html

www.dynavoxtech.com/products/eyemax/

On the sinemet 100mgs is still quite a low dose and that is the sort of results we got at 100mgs. once their hands/arms loosen up they have to learn to use them, probably a bit like CE, repetition is good, although bribery worked with ds, "lift your arm for a chocolate button etc"

ds is on 250mgs a day we noticed small differences everytime we upped it but i reckon real change was about 200mgs.

what time in the day does she take it as that can also make a difference?
each tablets effect wears off after a few hours so ds has 2 in the morning, 2 with lunch and one with dinner.

she has half the dose in the morning an half at night.

try giving her half in the morning and the other half in the afternoon, ideally midway through her day

the tablets should start to kick in after half an hour and as the effects wear off within a few hours, giving her it at night when shes going to bed wont have a beneficial effect on her motor skills IYKWIM

when ds started a few years back it was half a tab in the morning, then we added half at lunchtime for a week then half at dinnertime, then 1 in morning etc and upped it like that.

ds neuro is one of the top chaps in scotland and has been prescribing this for years, i think if docs havent used it much they tend to stick with what they know and divide stuff out in even doses throughout the day, this isnt how sinemet works really.

during our recent hospital stay the doc had wrote up his cardex to wake ds at 3anm to give him his sinemet till i pointed out that their wasnt really much point

you cant really find too much info on the net about sinemet use in children as its not licensed but i found this on levodopa...

"Therapeutic responses to levodopa therapy include a short-duration response, in which improvement in motor disability lasts a few hours after the administration of a single dose of levodopa"

ta muchly. You got the chappies name so I can give it to dd's doc? He's still a bit about sinemat and CP.

Dr Paul Eunson, sick kids, edinburgh