support/information sharing thread for parents of children with Cerebral Palsy

[inhibernation]

Hi, was wondering whether you might find this useful? I've got a 2 year old dd with CP and have received many messages of support on my own thread (previously ladylush) but would find it useful if there was a general thread that anyone could pop in and out of - so wondered if you might too. Sometimes I have to wade through pages of the SN board to find anything that relates to CP so it would make access easier.

Let me know your thoughts.

TIA

Hi. DGS is home and fine, not bothered by peg and putting on weight slowly, stress has gone from feeding!

So pleased you enjoyed Brainwave, we found it excellent in giving us an all round picture, instead of snapshots of this and that. And we have been good at doing the exercise program and sneezboys core is massively improved with our big ball exercises. We have a kaye bench ordered from the NHS but DGS doesnt use it much as his legs are a bit short....actually need to try it again as sat in corner getting dusty! I made (I like DIY (oddball!)) a non adjustable bench. Wooden shelf covered in foam (free from upholsterer locally) and wipe clean fabric. 4 coffee table legs from B&Q on each corner and not only a bench to sit on but also a low table when he is floor sitting! We have a sponser for the boy who will pay all the brainwave fees for a year! Really lovely person brilliant.

DGS also went from high tone to low tone, and now fluctuates

seating here We used this seating
( £39.99) which was brilliant, lovely upright position, hamstring stretch, able to access toys (used my diy bench!) even physio was happy as high sides not actually touching the body (skinny tyke) so making the core work. Selling mine for £15 atm as outgrown, but I can give you exact measurements.

Brainwave sounds really positive - fantastic! Is great about your sponsorship for sneezeboys therapy sneezecakesmum

slowlyburning - it is terrible about the lack of therapy for your DD

Has anyone used a wobble cushion for therapy exercises? Physio says we have to challenge DD's balance from an unsteady surface and uses a wedge shaped cushion in our therapy sessions. DD finds this really hard tho. Anyone done similar exercises and have any good ones to share??

You can get circular ones quite cheaply on ebay, I got one from Lidl with bobbly lumps on it (sold out now). DGS not really keen and even I struggle with it! Have also got a rocker board (goes side to side) good for shifting weight and vestibular exercise but we have to support him on it.

Thanks sneezecakesmum - just seen those ones on ebay so might give that a try. I imagine DD will need supporting on it as she goes over at the drop of a hat when the surface becomes uneven!

Just back from OT assessment where they are going to provide a special chair for DD in school to help with her core when she's sitting doing fine motor/drawing etc. Feel so lucky that we have access to all this equipment where we are - not fair that some people have to fight so hard for it...

that is so true and don't know why, we have lots of equipment and DGS has a jenx chair at nursery as well as one at home (which he doesnt use much)

Also waiting for a new stander (upright instead of the monkey prone stander). Also physio was talking today about trialing an alternative walker (he has a brand new rifton gait trainer.... another ) one with big wheels and more mobility possible, as the boy leans back and uses his extension in the rifton which is naughty. Feel a bit overwhelmed with equipment sometimes! Plus am looking at a wingbo, for all sorts of good things, vestibular, trunk and shoulder strengthening (and fun) and will post here if it works out! I guess you have to try lots of things and if they dont work out, well..... some things do and are brilliant!

DGS has no balance whatsoever, would fall over if a mouse farted!

Hi, haven't been on MN for ages, but thought I'd pop back and found this thread. I haven't read it all so if I've missed anything I apologise.

DD is just 3 (yesterday!) and has spastic diplegia following a premature birth (27 weeker who weighed 1lb 15oz). She was diagnosed in June last year - just as she started taking her first unaided steps. She now walks ok, as long as she's not going through a growth spurt, at which point she falls over all the time. She can walk quite a long way VERY slowly, or a short distance faster. She has just had her first wheelchair (we decided not to get a SN buggy as we didn't want the stigma of being an older child in a buggy when she starts school). Cognitively she is very bright - has taught herself to read, and is good verbally. She has good fine motor skills too - can bead thread (and has been able to since about 16 months), etc. She loves pedalling and steering her SN trike.

She is a stubborn madam who is gorgeous and cute with it... Thinks she can get away with everything (and usually can!)

I'll try to remember to check back here often!

Oh, just looking back a little, Thereonastair, we're in London in Sept for a week watching the paralympics. Would be happy to meet if wanted :)

thereonthestair and galena,

I am in london too for a week at the time of the paralympics....fancy meeting up? although my dd is slightly older she is very articulate and will express her feelings well - so if you wanted to meet an older very verbal child with cp, then I am quite happy to meet up
(I know when I met a teenager with cp who was studying and doing a levels and is now at university it helped me to put a few worries behind me)

:) We're there the first week of Sept. Busy the Tue, Wed and Thu mornings though ;)

will check with dh what events we are at and come back and let you know.....

anyone else going the paralympics?

Cool. We're at Equestrian, Swimming and Athletics (in that order, I think)

Funny that Galena,
we also have equestrian swimming and athletics but don't know which and what days other than we have a matt walker swimming final and an ellie simmonds swimming final as dd is into her swimming big style and has met these two swimmers, she also does rda so thats why we have equestrian tickets(but that will just be me and dd as the boys are allergic to the horses) and dh and ds really wanted to go the athletics stadium so we have tickets for some athletics too. my friend has basket ball as well.

We're at the paralympics - swimming, basketball and athletics I think.

Galena - your dd sounds delightful. Her development sounds similar to dd's. I haven't thought about a wheelchair yet. dd is so stubborn about the pushchair, I can't see her agreeing to a wheelchair. But she is about to start socialising with other children who have CP and this may change her perspective.

DD knows no-one in a wheelchair. However, she adores hers. I think it's because she's slightly higher up than in the pushchair and also not so 'enclosed'. When we went on holiday we couldn't take both push chair and wheelchair so we asked her what she wanted - and she wanted the wheelchair. Often she'll whinge if I go to put her in the car and ask to go in the wheelchair instead! Strange child!

However, It probably helps that she chose the bright pink colour and we've put vinyl stickers on the wheel spoke guards in purple and pink bubbles!

Hi jjkm and welcome here!

I am very jealous of the paralympic tickets - would love to have gone to something but find London too nerve-wracking so wouldn't dare go!

Anyone here have a DC whose speech is affected by their CP? DD's speech is and we've just been referred for SALT. Anyone find ST any use for dysfluency issues?

Welcome jjkm. You can dip in and out of the thread whenever you like. I understand how hard it is in the early months. We are a year on, so starting to get our heads around the diagnosis.

Hi jjkm. Spastic diplegia is one of the compications of prematurity/twins and usually associated with PVL. Luckily you are not alone and loads of 'further down the road' help here. I hope you are getting adequate services and so on? It must be doubly hard to see one twin flying ahead and the other one lagging, but it is a great incentive to copy their sibling.

Re speech delay, DGS (3.5) can't say any words clearly, but understands everything. SALT is rubbish and havent seen her for about a year! We think its to do with his weak trunk/core but are pretty stuck on what to do. Losing the will to live by chasing up SALT as there are so many other appts to attend. On the good side he is now on the weight chart for the first time. Hated the PEG but he has adapted to it well thank heavens. Still eating but less stress and no force feeding!

CP and brains are so so weird aren't they!

So glad you are having early intervention, it is so important. Do you do stretches etc? This book here it brilliant, lots of easy to follow photos re stretches and exercises, clear explanations, and suprisingly non scary for a book on CP! I always recommend it and everyone says its brilliant.

That is excellent re the sitting. It is good news for future walking!

Hi all, I've been absent from this thread for a while but I know some of you are interested in SDR. DS had his op on Wednesday of this week in Oswestry and it's gone very well. I am blogging about it at www.brookedup.tumblr.com if you are interested.

It's been a long haul getting here but I'm pleased we persevered.