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

Hey well done little sneezecake!!

No cooling for us despite my abruption but they thought dd was ok initially

Have namechanged btw - was survivingsummer but thought as I have survived the summer I should move on

Slowburner..DGS wont use his right arm much despite the fact it actually works! but with lots of perseverance he rolled to his tummy today and brought both arms up and rested on his elbows. Previously one arm would always go back! As advised by others on here we do lots of bringing his arms together for him such as catching a ball. Today he was making a good attempt at throwing it back, even though it went in every direction but forwards

You just keep going and then these lovely little breakthrough moments.

ha ha supposed - survivingwinter?! I was to be inhibernation just for the winter but think I might keep it. Hibernation has appeal all year round!

Well we have today paid for Brainwave in March. Happy Christmas DD.

The OT assessment went ok, she agrees completely that DD is an unusual case in that as assessment of her shoulder movement (done with dd happily engaging with the OT) shows there is no catch or stiffness to her right arm/shoulder. Therefore it should be possible with good therapy to encourage better use of her right side. The OT says it will be the end of January before she can give us any exercises or play therapy, which she will print out and pop in the post, and they will see DD again at Easter (!!!) for a review. She did say that dd's reluctance ti use her right side is hampered by her stiff shoulders, so is that Spastic diplegia?

The constraint therapy which our local NHS runs for blocks of 8 weeks according to the OT runs in summer. But physio said spring. We had to argue with the physio to get DD on it as she is apparently too young at 18 months in the spring. They use a glove for two hours a day for eight weeks and exercises are done too, I asked to have the exercises and we'd make our own glove. No can do.

The physio has yet to get in touch. I don't know wether the OT has taken over from the physio or wether we should still be having some contact with physio? All I have at the moment is the play plan which portage gave us a few weeks ago, we hand to her right, we give her loads of ball play and push along toys, messy and sensory play and I stretch her arms above her head when getting ready for bed.

And thats why we paid for Brainwave.

We also got a DVD from hemihelp. Its for one sided CP (R or L side - leg and arm) but we just use the tips to get the right arm moving. We are also off to brainwave in early March again! And today had the first ABM treatment. Was v impressed with ABM.

know nothing about constraint therapy.

Poor DGS so many other issues poor old r pandy has to get in line!

Second time we went to brainwave some kind person sponsered littlun so only cost £50! Don't know about next time though.

I have had some contact with hemihelp so I will get in touch re the DVD options tomorrow. thank you for suggestion :)

Is ABM anat baniel? What's it like?

I am hopeful Brainwave will help, DH doesn't seem that bothered by lack of support from OT or physio. I'm also quite worried about DD's arching again when dropping off to sleep, she seems to be constantly tired and grumpy at the moment, but she is teething. Don't know if it's a development leap on the horizon, she has taken t waking for several hours in the night. So so tired!

Anat beniel was good, DS took to the chap reasonably quickly.
He got DS to lay on his physio table type thing, and play with me and DH while he pushed bits of his body and messed with his feet, Mum will be able to explain better as she saw what he was doing while we were distracting but she is at work at the mo.
So far I think DS's appetite has got better but nothing else as yet.
He's coming back next week so we'll see how it progresses.

Why didn't I think of that one inhibernation?

sneezecake - you're back?! yay

Just been to school disco - bit sad as poor dd can't dance at all and she got all stressed and started fisting hands again with loud music probably not a good idea in hindsight but try to do all the 'normal' things we can with her...

new book coming out soon which i am told is very good, think it The Hemiplegia guide or something similar, I ordered it on Hemihelp website.

Anat Baniel method. Very few practitioners in this country but according to nice chap that came and did little DGS there are lots in training, hopefully some specialising in children. The man seems to gently manipulate certain (?) pressure/nerve points to try to let the brain know that certain pathways exist for the muscle/joints etc and that these more normal pathways work better and to use them instead of the abnormal pathways the jumbled up part of the brain goes down.

For instance DGS arm comes out and up at the shoulder, like a crane, to reach objects when a more effective movement is to keep the arm closer to the body and just move the elbow. We can physically hold it down but it would be better if he 'learnt' himself (brain) to do this...complicated!!!

Anyway afterwards he seemed more relaxed and flat footed, although it didnt last, but it is still very early days, and when the therapy was going on DGS
was very wriggly so it was like trying to hit a moving target! He did eat a chilli and garlic bread afterwards so hope he continues to make progress!

Sneezecake has been hiding as Jackthe.... so posts occasionally still...namechanging obviously fun.

Better late than never, I'm holding my hand up, I'd like to watch this thread. Not read everyone's comments yet but will read with interest. My DD is 10 years old with diplegia. Have had support from physio and OT over the years but I am finding it harder and harder to get visits and have just failed to get a statement (again).
I am getting ready for the next battle, getting the right support ready for high school. Can't do this until we find out which highschool she will get.
Wish I had the same determination and positive attitude that my DD has.

we've got a new referral.

they have 'physiatrists' here working out of the neuro clinic, which are apparently a cross between orthopaedic and physio specialists... who knew?

so they'll do full joints and spine check and get a look at those feet and ankles we've been ignoring for two years. and maybe gait clinic. so a full physical overhaul. yay! she's grown so much since any orthopod has been near her that it's definitely time. physio thinks her leg length difference might be more marked now, but wants it all done properly at the children's hosp. so she might end up with a lift in one shoe again to see if helps straighten her up. (she still leans to one side most of the time)

but 'physiatrist'. we've never had one of those before!

Does dd actually have one leg shorter or is it because she tilts her pelvis when she walks?madwoman. Gait analysis sounds good, think they do it before ops like Sdr.

Mabs . cooling is not recommended for prems only full term babes starved of oxygen.
what do i get DGS for xmas. Not bought a single card or pressie. Feel old familiar christmas panic creeeping up. He has everything already.cant move for toys and equipment. Think ill buy a physiatrist ...sounds very useful

My DD has a lift on one shoe because of the difference in her leg length her orthapaedic surgeon has said if it gets much worse they would inject her leg at certain points to stop it growing to give the other leg chance to catch up. He said it is all about timing and they like to do it mid teens. This is making her turn one leg in quite a lot, to the point where she can trip over her own foot. Physio says all we need to do is remind her to keep her feet straight (oh my God how much help is that).

no idea. i'm assuming that's why they need to get the ortho dudes to measure it all properly and have a good look, because the rest of us are just guessing...

lol at keep your feet straight. if only.

i think the physio is leaning towards afos . no-one else has bothered, because dd2 is so functional it would actually reduce her function rather than improve it. but i think we are at the point where she's going to grow so much that we might be causing more damage etc if we just let her get on with what she's doing. so i suppose we do need to look at safeguarding her joints for the future.

dd1's friend has a desperately cool leopard print afo that she just wears for physical activities, so at least dd2 has seen someone who is used to it and manages really well....

they did try a lift in one shoe years ago... but i can't remember that much about it i'm slightly alarmed about the injection thing, that sounds bizarre! (and i'm really short lol, the last thing we need to do is stunt her growth in any way!!!)

sorry very new to this can u tell me what afo is

Hi beca74 - afo's are orthotics - splints

There are different types - if you google afo you can see pics

Link here www.specialkidsintheuk.org/medical/orthotics.html

oh thank you dd going for hand splints and to be measured for feet

hi budgie,
i am sure we have chatted before,

will post later in the week regarding leg length discrepancy(am sure my dd is just slightly older than yours as she is now in year 7)and possibly facing surgery next year.
sorry it's so quick but have had a loonnnng day!

AAAGhhh

I am having a one step forward two steps back kind of a day, and need to let it out somewhere. And the bloomin computer just lost my post.

Reasons to be cheerful

Private physio says DS will not need splints forever, and will get away with having built up shoes. Also was very impressed with his progress and improvements in his core stability.

NHS physio is now talking about when DS will walk (earliest will be March latest sometime in summer apparently) DS will be 2 at end of May so late but not too late.

Physio says DS porbelms are "just" physical

CDC are talking about school and adjusting PE lessons

BUT>>>>>

In amongst it all to get us to there DS is now going to get an OT referral (having been told 2 weeks ago it wasn't necessary, but apparently its for the nursery to make adaptions etc to stairs and steps, and changing area not for him if that makes sense- but yet another professional to fit it)

And he needs a kaye walker as he is getting nowhere with walking toys, and I have to find a way to get it from home to nursery - a trip we do by bike - so that will be interesting. (and It may be I have to change my hours as I will have to now pick DS up on a Friday if it takes both of us to get him home)

the other parents at nursery are making comments about how much extra attention DS gets. The nursery are pissed off about that (although despite the temptation I didn't tell them which parents - dusts off halo against betetr judgement). Although they also say it must be because you cannot tell which I guess is good but its still crap.

But it all seems to highlight the differences.

Now I know from this thread and others that this is the hard stage when everything hits you as all the NT children are making progress but DS will be late, but please can someone remind me of this. And that the AFOs and the shorts and the walker will all be temporary, And that when the physiops say they are being agressive now that means just that and it isn't a predictor for the future as its too soon to tell.

And that this will all work out "ok" in the end as I am struggling.

Yay to the positive things Hilda his walking timescale sounds really positive and great that he is making such good progress..

Can't believe any parent would be commenting on him having extra time and attention at nursery - what is wrong with some people!

OT referral sounds good - they are also great for low core tone exercises IME also if your ds needs any extra support/facilities set up in school e.g laptop, accessibility the OT link can be really helpful. Does your DS have an IEP?

Agree that this stage is the hardest re progress - I remember when all my DD's friends were walking (some a year younger than her ) but he will get there

That was meant to be a smile at the end darn smileys!!

oh hilda i loved dd2's walker. she started off with a kaye, and had it for a few years (we had to do the to/ from nursery bit, although they funded a standing frame for nursery). then they decided she should try without it to see if it would encourage her to walk independently.

the year we didn't have one (just before school) was awful - it was heartbreaking to see her much less able because they had taken away her walker, and she really wasn't ready to walk - she could fling herself across a room (think just early toddling when they can't stop) and then have to grab at someone/ something to stay upright.

so after a year we went back to a walker (she had an r82 croc for school - it was awesome, much better than a kaye) and that gave her the transition she needed. just another year and she was fine. she's been happily independent since.

i loved the independence she had with a walker. and so did she. i remember her being soooo excited to walk the full length of the promenade when we went on holiday to the isle of wight. she literally grinned from ear to ear the whole way, with all of the other holiday makers grinning and waving back because they could see she was just having the time of her life.

i should warn you that a walker is every nursery child's favourite toy though, so there will be queue of kids wanting a go...

when she got competent, she would speed up and then lift herself up on her arms and sit on the back of it, to whizz along with no legs . and the reason we had to get the croc because she wanted to reverse and turn on a sixpence, and the kaye really wasn't up to the job.

dd2 'just' has physical difficulties.

ot was good for dd2 (still is). she does have fine motor difficulties and is mostly using a net book now, but they were great for sorting out adaptations. she needed a bar around the toilets so that she could balance etc. and they assessed the school for yr r and made sure there were dd2 height handrails on all the stairs. (she had 1-1 and the policy was that she would use any stairs last so that she didn't get bumped and jostled. this policy didn't extend to her new school in yr 1, despite me telling them, and she went over backwards on the stairs and took out the TA as well....) they were great at getting loads of different cutlery together etc and seeing which ones she was most able to get a grip of.

have you got a bike trailer? the kaye's do fold, so it would probably be fine in there (i think i used two webbing straps and fastened the back to the horizontal bit of the trailer?)

Been a bit of a crap day for DD and little DGS. First he's got a willie infection ...cries when he wees, horrible to see, but went to docs and got antibiotics. Maybe something to do with drinking only a third of whats normal. Also MDT meeting and he's only put on half a pound. He was doing OKish with lots of feeding, cream, dense cals, supplements and weight was going up, but since nursery (only 1 morning a week) in sept. its cold after cold after puking bug, and he now looks undernourished and is much more tired than before and struggles to find the energy for his exercises.

Paed again said PEG and DD and SIL I think are looking at this now as the only option and even though it seems like defeat, to see him so pale and thin is heartbreaking. Think it was the vom bug that did the worse, but snottiness makes him puke loads too. Sad as he was picking up really well with feeding and more interested in different foods.

But, it will hopefully take the stress out of feeding, help with his immunity, help with sleeping, get more fluids in, and break the vicious cycle of illness and losing weight. Its a shame as he can eat pretty well, no swallowing issues and loves chewing his t shirts but sadly not real food! Happily feeds the dog oranges tho so not phobic. Got a good report from germ factory nursery though