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Support/information sharing thread for parents of children with Cerebral Palsy - Part 2

(950 Posts)
Galena Tue 29-Jan-13 08:58:56

Can I start the new thread by saying, welcome to any parents of children with CP - any age, type, etc.

Looking back at the last thread, we have discussed treatment options, chatted about other peoples' perceptions, celebrated milestones, given support, and generally been lovely!

Come along in!

DD is 3.9 with Spastic Diplegia. Independent walker and attitude the size of a planet! We are considering SDR for her in the next year.

isw Fri 15-Feb-13 22:27:42

*5 at the end of the month!

everydayaschoolday Sun 17-Feb-13 21:01:31

Hanging thanks for tip on Bowen Technique. I've looked it up and it sounds really positive, and no harm done if it doesn't work for us (looks like a very specific form of gentle massage). We have a local practitioner about 8 miles away and on her website it mentions she's treated a 2yo boy with hemi successfully. At £30 per hour session, I think we'll definitely give it a try. thanks so much - I'd never have known about this thanks

Physio is very pleased with DD2 standing/side-stepping progress and was disappointed the standing frame took so long to arrive (2-3 months). Good news is that they think she's almost ready for the walking frame and are happy for us to have both. So they're sourcing a walking frame for her now because it took so long for the standing frame to be dispatched.

Amymouse apart from the walking frame, the physio & OT here have done all the offering of our equipment; we feel very lucky and supported. And as you can see, physio was very amenable to walking frame suggestion.

Thanks everyone.

inhibernation Mon 25-Feb-13 06:39:40

Bumping to mark place

Hi, I have a 12 year old daughter with left sided hemiplegia (and issues wih her right leg too)

She had botox injections two weeks ago, the latest in a long line of them.

inhibernation Sat 02-Mar-13 23:22:52

Welcome Pheasantplucker smile

Hi all <waves>

dd has taught herself to jump. She was so proud of herself at the library rhyme time session when she could join in. It was a proud/sad moment for me though as it takes her so long to prepare for the jump compared with her peers - hers is one to their 5 or 6! Still.....dd seemed oblivious and was really chuffed so that's what matters.

Still on waiting list for SDR @ Bristol. Not much else to report. Hope everyone is ok smile

Galena Wed 06-Mar-13 15:33:03

Hello all! Welcome to the new people!

We are still waiting to hear about SDR. DD had her physio assessment in Bristol on Jan 11th to see if she is suitable, and we are STILL waiting to receive the report. <sigh>

We're going to have Botox again in April anyway, to try to maintain her mobility before SDR as, if she is suitable, the op won't be for about another 8-9 months.

amymouse Wed 06-Mar-13 19:35:33

Curious as to what parents of prems with CP have been told.. We have just had 2.5 year review with our paed as well as recieving MRI results. MRI was surprisingly clear; our paed told us he has assumed he would find PVL to explain her lower limbs being affected and was a bit surprised by the outcome. DD is doing (in my non-expert opinion) brilliantly. She isn't yet walking on her own, only has a handful of words which are very recent and still relies on tube for feeds, but her understanding is excellent, she is very confident and seems to get on ok socially. He put her down as being at the stage of an 18mo on average, less so on gross motor skills which although doesn't seem wholly unreasonable. What he did say though, is he puts all of her delay including physical down to her prematurity not CP. I wasn't under any illusions that her CP was more severe, but as no one had really talked about it since dx, I did assume that it was the CP delaying her ability to learn to walk and to an extent her swallow/speech. Her tone is quite dynamic, when she tried to do something physical her legs become very tight and she still struggles to bring her feet flat. Her left leg (worst affected) is notably shorter looking because she can (even when relaxed) rarely straighten either leg and constantly looks hunched over. He thinks that the connections we can't see in the brain, are either damaged/immature due to her prematurity and that is what is affecting everything. So now I just feel very confused/thrown and also a little apprehensive about how this will pan out with the underlying mild CP. She was born 27+6 and aside from a very traumatic birth (born at home too quickly before medics could arrive) did pretty well in NICU; no major infections, no heart problems, no brain bleeds etc. I know its a case of being patient and just celebrating whatever comes whenever and cross any bridges when they come!

alwayslateforwork Wed 06-Mar-13 23:41:30

Just whizzing by... (It's madwoman btw)

Life absolutely crazy-making, but just busy, no drama!

Will have a catch up later x

thereonthestair Thu 07-Mar-13 07:28:21

Hello everyone. Galena hope you hear on sdr soon. We've currently decided to wait a bit for an sdr assessment, for a variety of reasons. Not least that ds is still not walking independently although he does love his kaye walker now. Changes to the team in Bristol and not really being sure where we would want to go to as a result, being another part of the reason. Anyway we'll see soon enough and probably do more Botox in the meantime.

Amy, ds was assessed at about 18 months when he was 2. He's caught up a bit since. We were told that it was all down to cp, rather than prematurity. A lot of it was because he did the assessment standing up, but can't stand! We haven't had an MRI though. Neither us nor the paed could see any point as mri's often don't show anything apparently, although the paed also told me that for dystonic cp the absence of damage in an MRI may well mean it's not cp. the physios also say that low tone due to prematurity is interacting with the cp, and also with his hyper mobility but that is also slowing ds down at this stage. I have to say that I am not sure I care much ds can do what he can do and why doesn't really affect that.

As a separate point anyone got experience of trikes or scooters for children with cp. I have a recommendation for a kitten, but also for a balance bike and an ordinary scooter. Any thoughts?

Also any thoughts about where to get second hand equipment from apart from eBay?

Dev9aug Thu 07-Mar-13 07:44:07

Hello everyone, hope everyone is doing well. With regards to prematurity thing, I don't actually know. Ds2 has had an MRI and genetic tests and they all came back clear. So they have no idea what caused it. He was born at 26+6 with an EMCS. To be honest, like thereonthestairI don't actually care, what caused it, I just want to make sure ds2 gets the best support he can to make sure he achieves his potential.

We had our paed review last week, he is 15 months old and she put his skill level down to 9months old. He is doing most things now, sitting, crawling, standing up himself against doors or sofa, cruising and walking with those brick trolleys. Our physio last week had him climbing stairs, well try to anyway.

We just moved yesterday and I am going to miss her as she was brilliant. She did also suggest to me to look into SDR. NHS physio and OT last week were rubbish in comparison, we are still waiting for Piedro's and a Kaye walker for him and its been over 7 weeks.

Did anyone else dc were small at this age and did they catch up? Ds2 is still off the charts, it's something like negative 4th percentile if they did plot it and we haven't got the foggiest what to do about it?

Dev9aug Thu 07-Mar-13 07:46:46

Oh and thereonthestair I am sorry we couldn't meet, we got very busy in the last couple of months that we haven't had a chance to breathe even. I was really looking forward to it as well..sad

Galena Thu 07-Mar-13 13:43:04

thereonthestair we have a kitten which DD LOVES! It gives her the freedom of getting from A to B without too much effort, but able to keep up with us. She has lateral supports and foot straps and is ok like that as long as she wears her DAFOs. We got the trike second hand, and it didn't have the built-in DAFO things which are available. We also have a balance bike but DD hasn't had a chance to try it yet because it is still too big for her. (One day she'll grow!). For Christmas she wanted a scooter so we got her a 'My first scooter' which is nice because it starts off with 4 wheels so they don't need to concentrate on the balance as well as the scooting. She likes it but is a) slow and b) has to be on a completely level surface. It is good physio though because she gets used to standing on one leg. So, sorry, that didn't help much, but it depends what you want it for - trike is good exercise and best for actually travelling, scooter is good for balance but slow and needs balance, balance bike we've not got to yet.

Dev DD was 'sitting, crawling, standing up himself [herself] against doors or sofa, cruising and walking with those brick trolleys' at 15 months actual (born at 27+4). She then plateaued for MONTHS which is when the concerns were raised about her CP. Then at 2 years she began to stand unaided for seconds at a time. Then at 2y2m she a) took her first unaided steps and b) was diagnosed with CP! She was also tiny. She only got onto the centiles for height at 3y5m and for weight at 2y3m. She's now creeping up gradually...

alwayslateforwork Thu 07-Mar-13 14:32:07

There, we had a kitten until dd2 was about 7. She now has a trailmate low rider. Same you don't live in Canada as we donated our kitten to the local physio to give to a child who would benefit - as far as I know, it's gathering dust in the store.

Remember to ask your physio about any local charities that help purchase this stuff. We've only ever used e-bay for second hand though.

Galena Thu 07-Mar-13 15:43:10

Not sure where you are, there but there's one at a really good price on ebay: www.ebay.co.uk/itm/111023160526

amymouse Thu 07-Mar-13 19:01:54

I'd been curious about scooters/trikes too. We've got a basic wooden ride-on for home and DD loves it to get around without help. We've started looking at walkers now. Physio did say because of her small size she might initially struggle with a walker and similar equipment which confused me a little; she isn't ridiculously little (about 83cm, in 12-18m clothes) and I'd thought it would be depend on strength etc unless equipment is giant!? I saw the first scooters where you can attach the seat until they can move independantly although was a bit worried about her launching herself off as her balance/core strength isn't always reliable! Guess trial and error will sort that!

thereonthestair Thu 07-Mar-13 19:08:49

Thanks for that, not my area but doable, so will check it out.

sneezecakesmum Fri 08-Mar-13 20:04:14

Facebook has a special needs equipment site which I think is better than ebay.

thereonthestair Fri 08-Mar-13 20:17:41

Bugger another reason to consider Facebook.... I do not yet have an account, and can't quite get my head round the idea it is not evil.

sneezecakesmum Sat 09-Mar-13 13:29:29

Its not evil grin Just make sure all your security setting are friends only and no one will find you if you dont want them to!

The site is excellent, no waiting around for auctions to end, lots of activity, nice honest people (so far) smile

Galena Sat 09-Mar-13 13:43:04

That's true, and where I found the link to the one above...

sneezecakesmum Sun 10-Mar-13 14:05:54

Has anyones kiddie used a KidWalk? Gait trainer that is. www.southwestmedical.com/products/KidWalk-Gait-Mobility-System-23365.html
its quite weird looking but the dynamic movement helps with balance and weight shifting and makes the child work more for balance which in turn makes for a more natural gait.

physio has loaned us one to trial with an aim to get a new one as the rifton gait trainer is outgrown.

sneezecakesmum Sun 10-Mar-13 14:11:47

www.youtube.com/watch?v=6YtHEHjfLc0 This explains the movement principle. Its huge compared to the trainer but the physical side of it looks brilliant.

Galena Sun 10-Mar-13 15:26:01

Looks really interesting... DD never used one, but it does look fantastic!

thereonthestair Wed 13-Mar-13 18:09:32

Hello everyone, me again. Quick qu at our last paed appointment the paed referred us to something called early support. No idea what it is apart from something for schools. Now they say we don't qualify. Any idea what it actually is?

amymouse Wed 13-Mar-13 19:47:58

If its the same as in our area, its a service designed to help them develop with attending nursery/pre-school in mind. We were referred as DD is marked as developmentally delayed in most areas to some extent and paed thought she would need a lot of help. We don't have portage but it sounds very similar to that with maybe more an education-based goal in mind. When Early Support came to do a home assessment they felt we wouldn't really qualify for the service because she seemed quite bright; that even though her speech is affected the SALT covered that and physio covers her physical difficulties, and her play skills seems roughly age-appropriate which was what they intended to work on. I think maybe our paed felt she was more behind than they did, if that makes sense! We were told to keep their number and wait until I send her to nursery at which point they will co-ordinate her care as appropriate and work with the other services like SALT, PT to make sure she has the support she needs. Maybe if your nursery is already very good at ensuring your sons needs as met they felt they didn't need anything more? If it is something different in your area, apologies for ramble!

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