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

999 replies

inhibernation · 03/11/2011 12:59

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 Smile

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sneezecake · 15/05/2012 21:22

Hi sorry not been on for a while, great to catch up with everyone though Smile we are just in the process of sorting out a trike for ds he had a sit in 3 today and did so well so great to see him finally move under his own steam!

Original poster
inhibernation · 16/05/2012 20:34

Hairy - so glad that ds is doing well and can see for himself that there are gains already Smile

Sneeze - great that ds did well with a trike. Bet he will love it.

Galena - dd was seen at Bristol this week. She is too young for formal assessment but Dr Aquilina says so far she fits the spectrum of children he has operated on. He is going to apply for funding and will see dd again in 6 months.

Skewiff - dd's physio thinks dd would benefit from Botox in her left gastroc but Martin Gough at Evelina is not a fan of it. What to do....

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zebrafinch · 17/05/2012 12:48

Intra thecal baclofen
Just caught up,with this thread and will post separately as might get a wider viewing see the main listing

jjkm · 17/05/2012 15:35

This reply has been deleted

Message withdrawn at poster's request.

madwomanintheattic · 17/05/2012 16:04

Jj, dh is involved with some companies who use geospatial technology for typing using a glove. It's fascinating.

The joystick idea is great but I'm having trouble visualising the technology from that article. It was one of the things we were really keen to do with dd2 way back when - and so we bought one of those v tech smile things. She couldn't use the joystick or three buttons at all at first, so we did hand over hand for months, but the repeated movements obviously connected enough neuro pathways for her to eventually do it independently. It was v shaky to start with, but she is quite adept now, and has graduated to a Ds, lol.

Galena, how are you doing with schools?

Dd2 had her PATs this week (like SAts, but they do them in y3). She used her laptop and had extra time and seemed pleased. She won't get the results until September.

zebrafinch · 18/05/2012 04:38

Thanks jjkm I still have to learn how to link. Will be happy to answer any questions on the link

Sneezecakesmama · 19/05/2012 21:58

Lol we too have v tech smile and dgs loves wall-e so we are letting him (hopefully) get to grips with a joystick as he is going to be measured up for a whizzy bug in June and that uses a joystick to operate. So we will start practicing. Feel a bit more confident now we know mini madgirl gradually got there.

We know of a child on baclofen but not intrathecal.

chatee · 25/05/2012 10:17

wow hairy - balancing on the wobble board is amazing, thank you for sharing your experiences through your blog - i have enjoyed(is that the right word?) reading and learning more about our children with cp...did you have a look at the board in orlau?
have a great weekend and hope your ds keeps up all his good work xx

Sneezecakesmama · 25/05/2012 20:48

Hairy....your DS looks amazing! All the work and worry has been worth it, you must all be on cloud 9. Bless him and so glad little Ds2 had a nice birthday.

Success stories make my day and gives everyone hope for the future.

HairyMaclary · 25/05/2012 21:46

Aah thanks both of you! We' came home a bit early for the weekend as DS was so tired it was a bit of a waste of time! Back on Monday for the last three days. Forgot to look at orlau last week, will be there again on Tuesday so will look then.

Galena · 28/05/2012 20:01

Hairy, just caught up with your blog. It's fantastic how well he's doing! I can't wait to find out whether DD is suitable at Bristol (although it looks like we're going to have to self fund - I know of 3 children from our PCT going to Bristol, and 2 of them definitely don't have funding).

Madwoman, we have decided on a school - the small one which was in special measures but is now good, etc. They just seem to tick all the boxes for DD - small school, on the level, caring staff, etc. Now to try to sort out getting her to stay at playgroup without me!

Original poster
inhibernation · 01/06/2012 20:36

Hairy - so glad ds is doing well Smile and belated bday greetings to your other ds.

Galena - have you been on the Facebook SDR website? It's looking unlikely that NICE are going to change their view anytime soon wrt funding. Yet I haven't heard 1 story where a child hasn't done well after SDR. Guess it suits the NHS to have us self-funding. It's win win for them.

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survivingspring · 07/06/2012 21:01

Hope you all enjoyed the Jubilee weekend!

Galena - a smaller school is a good way forward IME especially with strong pastoral support. I hope a miracle happens with the funding though!

Can anyone recommend a good toilet seat for an older child? It looks like we'll have to buy one ourselves as there is a row between continence services and OT but just want something to prevent DD falling down the loo (again!).

What a nightmare week for half term - DD needed the rest after last term but wow have we all been bored stuck in at home!!

Original poster
inhibernation · 09/06/2012 23:04

Too right - awful weather! Had to really be creative to think up things to do with the kids. Everything was indoor!

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Original poster
inhibernation · 09/06/2012 23:06

Has anyone heard of taping as a type of physio? Apparently it is supposed to help both pre and post surgery. I read about it on the SDR facebook page.

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Sneezecakesmama · 10/06/2012 14:39

No idea what taping is?

Bumbo do a toilet seat, dgs not sat on it yet though, freaked!

We have had amazing luck with the trike. Dgs tried and tested some under OT guidance and settled on a small one but cost was £1800. Looked at all the charity funding and looking at months before they award...summer long gone and dgs outgrowing smaller one without getting much use. Sad Btw he adored cycling around the physio corridors so we know he will benefit now.

Me with Head in hands with despair yesterday when DSIL spotted kitten trike on ebay, never used, near perfect condition, all the supports dgs needs ......paid a more than reasonable buy It now price (gave£50 extra as so overjoyed Blush gorgeous trike! And no fannying around looking for funding! Can't wait to get him on it. Happy happy us!

HairyMaclary · 10/06/2012 14:48

Taping works on the same principles as Lycra suits, giving biofeeeback and helping with the perception of where their bod.y is in space. DS has previously had excellent results with lycra suits but now refuses to put one on, we trialled taping at his physio session on Thursday evening, amazing results, he was much more secure and could start to self correct using the muscles that were taped. A Lycra suit would be better for DS at the moment, but as he won't wear one we will focus on specific muscle groups, in his case around the hips and bottom, with taping.

survivingspring · 10/06/2012 19:50

Yay about the kitten trike sneezecakesmama!

Thanks for the info about bumbo toilet seat - I'll have a look. Continence nurse thinks this will help with our poo problems if she feels more secure - fingers crossed..

Sneezecakesmama · 11/06/2012 20:44

Another happy moment for us. DD and her DH took the little monkey to bath to trial a whizzy bug here. He absolutely loved it, ran over everyone's toes, into the wall, managed to use the joystick after a fashion! Takes 10-12 weeks to build but looks such fun. Trike in the summer and then wizzybug! Bonkers!

skewiff · 11/06/2012 20:56

where do you go for physio HairyMaclary? Is it private of NHS? I am just interested to see if the NHS would do taping ...

skewiff · 11/06/2012 20:58

inhibernation ... who is Martin Gough at Evelina? and why is he not a fan of Botox! I really do have to find out the pros and cons before going ahead - am not being very proactive about it at the moment.

skewiff · 11/06/2012 21:08

sorry inhibernation: I have just looked back over old posts and worked out what Evelina is and who Mr Gough is ...

And I have read what you said about muscle wastage.

I don't understand how this can be because the muscles they are injecting are the ones that they don't want to be used. So I presume its OK if these muscles waste. When the incorrect muscles are injected it allows the 'correct' muscles to be used and therefore I presume they have more opportunity to grow.

However, as I've said before I have no idea about all of this. I'll ring Great Ormond Street tomorrow and ask them about it.

HairyMaclary · 11/06/2012 22:30

Skewiff - re Botox - it's fine for the muscles to be wasted if the child really is never going to use them functionally. However this is not the case for most children. There is likely to be some functional movement there. It is a fine balance between maximising that by delaying the onset of contractures with Botox followed by physio and blasting away what little muscle strength there is there anyway. In our case, DS had three lots of Botox, IMO the first two lots were fantastic, really beneficial for him. The third lot took away muscle strength and bulk, marginally, but noticeably. He really couldn't afford to loose that but we'd had such good results the first two times ...

Re - physio - the one doing th taping is private, but our NHS one has done it previously with the DS of a friend but there is no finding to do it now ...

Sneeze cake - that whizzy bug looks fantastic! Is it from MERU? I think they do one very similar. I love the trailer attachment !

Original poster
inhibernation · 11/06/2012 23:24

sneezecakesmama - so thrilled for dgs about the kitten and the whizzy bug. I saw a child with one of those and they look brilliant. A good week in the sneeze family Smile

Hairy - thanks for explaining that better than I could!

Skewiff - I am as confused as you. So much conflicting advice. dd's private physio is convinced dd is ideal for it. The Paed said she would get an opinion from GOSH so I am interested to hear what you glean there. dd has done so well overall but the high tone in her ankles are a major issue and if we can buy a bit of time before she has SDR I think it's worth us considering. Perhaps a one off.

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Sneezecakesmama · 12/06/2012 11:42

Wizzybug is made at the Bath Institute for medical engineering. They make all sorts of things and are quite experimental. Cost around £3-4000 and built specially for each child! All funded by charity so brilliant.

We have a Botox clinic end of June and really hope DGS doesn't need it so we are concentrating on stretching and fingers x. DGSs feet can go flat to the floor but he tippytoes with increased effort.