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Cerebal Palsy - What can I do at home with ds2 to help him while we wait for the system to kick in?

(34 Posts)
yomellamoHelly Wed 13-Aug-08 15:12:22

Title says it all really.

We got a diagnosis at the start of last week and the consultant said how important it was to get him into physio therapy etc etc as soon as possible given that he's 20 months.

We're still waiting for the childrens' centre to receive the referral letter (was sent out yesterday after I chased it) and then they only review new cases each Tuesday. Then we have to wait for them to book him in etc. etc.

All a bit annoying.

I've been trying to get him to sit for 2 1/2 months now so sit him up at every opportunity and also bought a bumbo to help this process at mealtimes, but am not sure what to do beyond that.

PheasantPlucker Wed 13-Aug-08 15:17:10

I am trying to remember what we did.... dd is now 7. I do remember getting a plastic mat that had water in it to try to get her to lift her head whilst on her front, to pat it with her hands, and to make her try to touch it with her feet whilst sitting in a bouncer type chair. I also did this with crinkly paper. Head and trunk control was a big issue with dd1. I am will try to remember what else we did. Bear with me. Oh, and good luck with everything.

Romy7 Wed 13-Aug-08 15:37:33

buy a gym ball - can be used to give tummy time and improve head control and trunk strength (think you standing behind holding firmly around pelvis with ds on his tummy facing away) dd2 loved the vibration on her lips too. find a friend to stimulate and hold attention at the head end - or tv or whatever! ball can be used later if he sits to promote further trunk strength (i won't attempt to explain that - it needs a physio and a very firm grip!)
lie on tummy propped under chest with towels - an impromptu 'wedge' - physio will probably give you a real one in the fullness of time - and again stimulate and try to encourage head lifting and reaching and grasping - not sure whether ds can hold rattle etc, sorry.
flashy light toys from the pound shop good for holding attention (as long as no szs lol) anything that crinkles/ noise etc. vibrating buzzy toys also good.
essentially, any activity at all that promotes interaction will be of enormous benefit - try to do activities symmetrically - ie on both sides, whether or not he favours one side, and try to encourage bringing of hands to the midline - ie to tummy.
dd2 is nearly 5, so trawling the memory banks a bit, but don't worry - lots and lots to do, and as long as you are doing something, then you're doing the right thing! xx
those bacofoil marathon runners capes are a good tactile thing too - and cheap.

Raine3 Wed 13-Aug-08 15:40:54

My DS (who has CP) is two next week and luckily he still fits in the bumbo!

I started giving my DS leg stretches when he was about 7 months which was just as well because we did not get a physiotherapist until he was overa year old and we only get physio once every two weeks now anyway.

There is a great book called Teaching Motor Skills to Children With Cerebraal Palsy, which looks at children from approx 7months - 8years it costs abou £20 but you can get one from abebooks.co.uk for about £7.

http://www.abebooks.co.uk/servlet/SearchResults?bt.x=0&bt.y=0&kn=teaching+motor+skills+cerebr al&sortby=3&sts=t

Raineturland@btinternet.com

feel free to email me (& I'll give you my phone number) just in case you need to ask anything or just talk to someone.

Also when I sit my DS in his pushchair I have started to put the straps around his waist to encourage him to control his torso, I know it sounds a bit mean and to start with he was all over the place (kept bumping his head) blush but even after a few weeks he is so much better with his balance ... we even go over the fiels & to the river with the dog and he loves it, he is even starting to laugh at the wind in his face (he used to gag and scream blue murder).

Wishing you the very best of luck .... just take it one day at a time x

sarah293 Wed 13-Aug-08 16:45:59

Message withdrawn

Romy7 Wed 13-Aug-08 17:06:01

agree with riven - we stretched every nappy change as a rule - that way we didn't forget and it just became part of the routine. extra massage after bathtime - dd2 was very tactile defensive about her arms, so we spent a lot of time trying to desensitise her...

mm22bys Wed 13-Aug-08 17:11:06

Hi, DS2 doesn't have CP (as far as we know) but we have had him in physio for a while now.

We started with stretches, the physio was really concerned that he screamed with blue murder when we tried to get him to raise his arms. We also stretched his legs - ankles, hips.

We put him on a gymball to help with balance and to get the save reflex to emerge.

We also used a wedge to encourage head lifting (took a LONG time...)

We spent a long time encouraging him to reach, with both hands...

It's all a bit dim now...we also tried to encourage him to rollover, for him it took a long time to roll from his tummy to his back (which in itself caused problems because it meant he could get out of tummy time - nice "problem" to have!)

I have the book that others have referred to, it is really informative, has great descriptions and pictures.

All the best,

anonandlikeit Wed 13-Aug-08 17:45:23

trying to remember what we did with ds2, much of the above. I also remember lots of neck/head control strengthening.
Doing row, row row your boat on the floor at first supporting the head & neck with my hands instead of holding his hands IYKWIM, gradually as his strength & control grew we gave less support. It did take ages & we were all so fed up with the song.

Also lots of stretches while he was in the bath he seemed to tolerate it much better, I would roll him about lots in the bath. Or put a small amount of water in the bottom & lay him, encouraging him to kick to splash me & then flip him over on to his tummy, this encouraged him to lift his head, otherwise it was in the water

We also tried swimming & then hydro.

We also had a little push along car thingy that had a high backrest & harness (from toyrrus i think) but it did help encourage his sitting balance.

Also allowing him to be treated like any other little brother, so plenty of rough & tumble play with ds2.

I hope you get your appnts though quickly & some good positive advice from the physios.

Romy7 Wed 13-Aug-08 17:49:15

oh, anon - hours of row, row!! had forgotten that - it was dd2's first attempt at speech, too xx

sarah293 Wed 13-Aug-08 17:54:52

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Romy7 Wed 13-Aug-08 18:04:35

i know we've been given fairly straightforward advice by our therapists when we've been working towards stuff - ie at what point do you say 'that's not going to work, so we'll concentrate on this', but only after discussing what is most important - getting it all to work properly, or concentrating on some form of functionality...
does your dd get good physio riven? in your position i'd be hoping they were still working towards getting as much head control as possible, to open up communication and mobility possibilities... i'm really crossing my fingers now and hoping that you are still getting good therapy...

sarah293 Wed 13-Aug-08 19:05:45

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yomellamoHelly Wed 13-Aug-08 19:12:49

Thanks for all your ideas. Will show this to dh as he's really stressed about this too. Before this diagnosis I was bumbling along thinking well he'll get there in the end (with a nagging voice asking what if he doesn't though).

Hadn't thought about putting him on his front in the bath. Did give him a deep bath tonight to try and get him moving around, but found it quite worrying with his brother demanding attention too.

Will also reinstate the massages after.

Already doing row row the boat. Not that he enjoys it at all, but will persevere since it's rung a bell. And will also see what I can do about a gym ball, wedge, more tactile stuff and that book.

Thank you all so much for your help. I really appreciate your help.

I'm finding that he's been getting really quite tired this last week and a half with me trying to get him to sit or lie on his front all the time. (Never mind me getting nothing done!) I don't know quite how much is being cruel to be kind and just being plain cruel really. Anyone else experience this?

sarah293 Wed 13-Aug-08 19:17:23

Message withdrawn

Romy7 Wed 13-Aug-08 20:18:55

and don't forget 'heads, shoulders, kness and toes' with you touching each part, and later guiding hand over hand if he's got that much flexibility (dd2 was very stiff to start with, but is very bendy now - don't know what muscle tone you are dealing with?) you can do it as part of the massage after bath with him laying on his back...

yomella - my parenting tactics are about as fluffy as attila the hun, so i won't give you any advice on cruelty lol! i do think that at this age, the more you can persuade the little ones to do/ have done, the better, to a reasonable extent! they do need down time and you both need just play and cuddles, not all therapy though grin does he giggle? we waited so long for dd2 to learn to smile and develop a beavis and butthead 'hurr hurr' that our greatest pleasure was just to tickle her and see if we could get a response grin

riven - urgh. hope school get a grip really fast and fingers crossed she thrives in the new environment. i've got a school chair and a commode in my hall for the summer as somehow i got landed with the transfer... at least i know it's happened though wink how are you feeling about school now?

Romy7 Wed 13-Aug-08 20:24:30

oh, i've remembered a really good one!
get a cheap sparkly, tasselly dance baton from the pound shop or toys r us, and do 'the grand old duke of york' with him lying on his back. you can hand over hand if he can't hold the baton, but the 'up' gives a good stretch over the head (particularly if you can persuade baton to reach the floor above head) grin if he can hold it himself you can built up to 'driving' movements too, and reaching for the baton, and practise crossing the midline. good to encourage grip as well as stretching...

if i have any more 'memory lane' moments, i'll let you know wink

mm22bys Wed 13-Aug-08 20:51:20

We spent ages just sitting over DS2 to keep him on his tummy.

Yes I got nothing done (still don't)

Sometimes it felt (should be feels but am being slack) like DS2 was in therapy all the time....

All the best,

HairyMaclary Wed 13-Aug-08 21:44:57

My Ds has cp also and I would say try to incorporate 'therapy' into everything you do. Therefore at mealtimes you make him reach, out, up, sideways to things; at bathtime you stick toys on each side of the bath and encourage him to get them *with the opposite hand*.
Also encourage him to bang two things together, or start by moving one towards the other, cutlery at the table is good! Try and do some standing practise at this stage too so that he stands at the sofa and plays with you supporting him, getting weight bearing through the feet is very important even before he's sitting independently. Same with weight bearing through the arms, put him over your knee and encourage him to put weight through his arms resting on flat hands, then reaching with out to get something with one hand, this is a good activity to do with the older one as they can play with them while you support!
We also have a great book, will dig out the title, but it's written by some of the original Bobath people. Bobath is also worth a google for ideas.
sorry this is a bit fractured, just typing as I thought, it depends also how your DS is affected as to what they need to do but generally, stretch, cross the midline, or bring hands to the midline and weight bearing are things I would concentrate on.

yomellamoHelly Wed 13-Aug-08 22:14:18

Ds2 is VERY bendy. That's part of his problem really. He has no stop point and ends up in really bizarre positions.
Maybe (?) as a consequence he doesn't weight-bear and I struggle to get even his feet flat on the floor. Dh and I tried to get him to stand at the weekend and the best we got was the sides of his feet on the floor. He wanted to put the tops of his feet on the floor if that makes any sense. Was totally bandy-legged. I think the total lack of lower body strength will stop him crawling any time soon.
He can lift his head up for short periods, but needs to be pushed to do it. Seems to have no drive / curiosity to try new things. Will reach for things, but grip not great.
Kind of forming the impression that this referral to the childrens' centre is not going to be a magic pill and we're going to have to keep on slowly feeling our way forwards as before.

Raine3 Thu 14-Aug-08 00:29:49

Did you know that you can get a tray that attaches to the bumbo (ebay probably sell them) if he can't actually grab at things yet you could try childrens foam soap on the tray or if he can do hand to mouth then use squirty cream ... when my DS was unable to grip this was a good way to get him to use his hands even if it was only to swipe it onto the floor!

mm22bys Thu 14-Aug-08 08:59:01

Yomellamohelly, I won't pretend that it won't be a long hard process. When DS2 was initially referred to be assessed, we were told that he would make progress, but we just had to motivate him. DS2 was in a slightly different position to your DS in that his vision and hearing were copromised, but now that the vision is sorting itself out (we hope) and he's got grommets his sensory input is a lot greater so he's got motivation.

Are you in a position to see private therapists while you wait for the the children's centre? Even if you can't go regularly maybe they could give you exercises and the like to do at home in the meantime.

All the best,

Romy7 Thu 14-Aug-08 09:10:41

ok - so don't 'overdo' the stretching then grin but concentrate on staying within normal range of movement. hands to midline, reaching and grasping and lots and lots of stimulation.
dd2 seemed to be on completely another planet for such a long time, but gradually she did seem to 'wake up'. it was a bit like coming round from a long sleep, and only at that point did it seem like we were saying 'hello'... is he interested in you singing? we ended up doing most activities with me blethering on to keep up her interest.
you should also ask for a referral to the portage service. (it might be called home-visiting teacher or similar in your area) as well as the physio they will be very useful at bringing different toys and ideas to your home - usually they come once a week, and are a very very useful bunch! quite often they will bring toys and activities that you hadn't thought of, so you have different ideas to try on your own. also find out where your local toy library is - they are very often free to join for parents of sn children - and go and browse the sn section - usually v well stocked. lots of stuff that the physio etc will bring to use, and lots that you can borrow to get his attention for your own therapy time.
we used the very tiny lightweight elc rattles (like a short pencil to hold with a bell shaped rattle - little pieces of plastic) which was the first (and only) thing that dd2 could grasp for a long time. if he has no real grasp then you might need to adapt the tiny newborn rattles that fasten around the wrist and socks that have rattles in them. we used them a lot so that she was aware of what her limbs were up to during activities.
does he mouth at all? if not, then it's quite important to help him do so if you can work out how to lol... not sure where he is on that side of things...

Raine3 Thu 14-Aug-08 09:46:28

Sorry I know you have loads of suggestions but this one may help with head control, when he is having 'tummy time' if you roll up a towel any lie him over it at armpit level it will make it a bit easier for him to lift his head, you can then prop a mirror in front of the sofa so that he can see himself (and you behind him) when he lifts his head.

You could also ask (OT) for a chair for him, as this would probably help him a lot too, as they give support where your average chair won't.

anonandlikeit Thu 14-Aug-08 21:03:12

The other thing i remember ds2's physio telling us was that if he is hating an exercise then don't force it. Give that particular exercise a rest for a while or swap it for a similar game.

DS2 has a very floppy upper body & stiff lower body, (spastic diplega with low muscle tone).
We would constantly have to touch his hands to remind him & stimulate him to move them to reach & grab & touch his chin to prompt him to lift his head.

As someone else said build little challenges in to your daily routine & make games out of everything else, hopefully he shouldn't realise its therapy

MintPattie Fri 15-Aug-08 18:17:12

Have you considered Conductive Education? For LOs there is School for Parents which involves a weekly session for a few hours. They are charity run and there's no charge for parents. DD has quad CP and has been involved in Conductive Ed since she was 6 months old and we have found it extremely beneficial...lots of suggestions that we incorporate into daily life. Some physio's are anti and others support it - use your own judgement. There's a list on the Scope website.

Swimming is also a really good activity physically and socially - our access to hydro is sporadic but we religiously attend the pool once a week.

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