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

(1000 Posts)
inhibernation Thu 03-Nov-11 12:59:17

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

survivingsummer Thu 03-Nov-11 13:12:01

Yes please smile would be very useful!
I also do the same - not that I don't find other threads interesting but just don't have much to offer blush

My dd hasn't a 'technical' dx of CP (yet) but was brain injured at birth and has some mildish physical difficulties. She is 4 and has just started MS primary school.

inhibernation Thu 03-Nov-11 13:19:56

Me too smile Actually tbh I don't have a lot of knowledge about CP either but that's one of the reasons I come on here smile

inhibernation Thu 03-Nov-11 13:21:25

How is your dd finding school?

survivingsummer Thu 03-Nov-11 13:29:18

She's doing great thanks! She somehow stays upright in the playground most of the time shock and has even learned to write her name! We're looking at re-referring for OT as she's likely to be a computer user long term due to fine motor difficulties.

Hope your dd doing ok?

inhibernation Thu 03-Nov-11 13:41:29

Great to hear that she's doing well smile My dd is only 2 and we are fairly new to this as she was only diagnosed in April. She has spastic diplegia and it seems to be mainly her legs that are affected, and worse on one side. She doesn't have any cognitive problems and her speech is very good. We have had mixed professional views on her prognosis (mostly positive though) but the main concerns are her risk of contractures and hip dysplasia (which she already has early signs of). She isn't walking but uses a kaye walker or walks holding our hand. She walks on her toes but has splints to correct that. She goes to a main stream nursery for 10 hours a week and really enjoys it.

skewiff Thu 03-Nov-11 20:35:44

Yes I would like a special thread for CP please. I also wade through all the special needs stuff looking for things that are relevant and helpful for my son (who has CP). And there are not a lot of people who come on here about this.

Please could we have a special CP thread mumsnet?

survivingsummer Thu 03-Nov-11 20:36:05

Sounds like she's doing really well - I can remember months of my dd practising walking holding our hands! My dd has fluctuating tone and a weak trunk so more on the 'athetoid' side and we also had a mixed picture about her prognosis from the various professionals involved. However, even the teacher is shocked by her determination - if anyone tries to help her with anything then woe betide smile

inhibernation Thu 03-Nov-11 20:43:23

skewiff - we can use this one until mumsnet give us our own. I'm sure parents of children with other diagnoses would like their own thread as well. Maybe the SN board could be refined a little............?

We need a few experts to come along..........madwomanintheattic, hairymaclary, the lady who practically diagnosed my dd (whose name I can't quite remember - but should!).

inhibernation Thu 03-Nov-11 20:45:14

survivingsummer - yes I am sure you're right. That determination surely must help. dd is similar. Has a tantrum if I suggest she goes in the buggy or I carry her grin

anonandlikeit Thu 03-Nov-11 20:49:22

Hello all, yes a CP thread would be good mos tof the threads on here do seem to be asd related... not complaining as ds2 has ASD too so find both very helpful.
DS2 is 9 has mild CP (Spastic diplegia),autism and a couple of othe bits going on.
Be good to share knowledge & stories smile

inhibernation Thu 03-Nov-11 20:52:42

Good - that's four of us now................roll up roll up grin

2old2beamum Thu 03-Nov-11 20:54:06

yes please find this site very useful but not an awful lot on CP DS 12yrs CP. deafblind (for us so sad) and epilepsy. Would be grateful for any support.

chatee Thu 03-Nov-11 21:02:29

rolling up i found this site so helpful when dd was being investigated and first diagnosed
dd 11 originally diagnosed spastic diplegia at 2 yrs 4 months but at 6 years changed to spastic quadriplegia
look forward to getting to know you all and us all helping each other out

inhibernation Thu 03-Nov-11 21:08:12

2old2beamum - sorry to hear about your ds. That's one of the many frustrations about CP - it's manifestation varies so much from one child to another. I've read of many developments in the treatment of deafness and blindness - is there anything that may be able to help your son in this respect? And how often does he fit? Is it a type that he may grow out of do you know? Does he like school? What support do you get? Sorry for all the questions blush Tell me to bugger orf if it seems a bit intrusive - I won't mind smile

inhibernation Thu 03-Nov-11 21:10:04

Hi Chatee - have seen some of your older posts when searching the archives. How is your ds doing?

inhibernation Thu 03-Nov-11 21:10:29

Oh sorry - I mean dd blush

itseasyifunohow Thu 03-Nov-11 21:23:40

2old2beamum have you contacted Sense the charity that supports children who are Deafblind and also children who have single sensory loss with additional needs? It sounds from your post as if you need a bit of support and as Sense is a national charity there may be someone who could give you help, especially as you DS is coming towards the transition stage of his schooling will give you all the information you need. Good luck!

Sevenfold Thu 03-Nov-11 21:26:50

wow had to post.
I don't post on the sn topic anymore, but what a good idea. my dd is 16 and has cp, and so think a thread just for CP is such a good idea,
hope it goes well.....think I will be lurking a lot

inhibernation Thu 03-Nov-11 21:33:25

I'm so glad people think it will be helpful. When I first had an inkling about dd, I found it so hard to gather information. I've learned a lot from madwoman and sneezecake (yes, I remembered!) and hairymclary et al.........but I didn't want to have to start a thread everytime I want to talk to them. It's not just about me..........I thought we could all benefit from it. And it's not just the seasoned mums/grans I've drawn support from - it's the people who are just starting out on this crazy journey (like hildathebuilder).
I just think it would be great for us all to have a forum where we can meet - regardless of how old our children are.

chatee Thu 03-Nov-11 21:40:44

hiya inhibernation'
my dd is doing quite well at the moment, has just transferred to a high achieving mainstream secondary school(her only barrier to education is her physical disabilities-cognitively on a par with her peers (in fact got level 5 maths at ks2 and level 4's for everything else!) and seems to be settling in and enjoying it...she was 'wrapped up in cotton wool' a little too much when she first started and it really wound her up (she has never and will never be wrapped up or treated any differently to her sibling - it's a big bad world out there and she needs to know that!) but after a quick meeting with senco they soon realised that she wants to be treated like all the other year 7's and if she falls over then she falls over and faces the consequences...but at least allow her the independence to do things- admitedly she is tired now(not really a major issue at primary)and can be a pita when she comes home and is waiting for food so now I encourageher to go straight upstairs(to avoid any arguments)and deliver a glass of milk and cereal bar and this seems to be working(fingers crossed)and have also encouraged her to use her wheelchair at school for transferring longer distances between lessons-which i know she has done once or twice this I'll stop waffling on now and ask a little more about your little one as I recall she has spastic diplegia? dd was originally diagnosed with this but I knew at around 3.5 years that her arms were affected(she knew exactly where she wanted the piece of jigsaw puzzle to go but could not co-ordinate her hands to do as she wanted- imagine major strops and flying jigsaw puzzles)so I was not overly worried when her diagnosis was changed as just saw this as a means to ensuring she had the best support I could get for her- it didn't change dd she was still her determined self.dd used a k walker(2 yrs-9 yrs) and still wears splints- please persevere with any child resisting wearing splints as I have seen quite a few cp kids with awful gait or undergoing surgery(earlier than they would have needed) as the child'refused' to wear the splints...remember they are the child you are the adult, even if it takes bribery to start with until they are old enough to explain and reason dd would be in a wheelchair now if I hadn't persevered(that is not aimed at you personally by the way-but for anyone who reads this)but instead she is walking unaided(well aided by splints)and is so grateful that she can.
again physio is your friend whilst they are little and at home as you can incorporate it into a play routine or whilst watching a fave tv programme just 5-10 mins each time(a few times a day)will make the difference,
swimming from as early as possible-my dd loves and says she feels free-has this year actually swum at the GB National Disability Championships at Sheffield and through her sport has developed so much confidence and learned that you have to practise to get better and tfy hard all the time(and this has equally shown in her attitude to her school work and life in general)Horse riding with RDA when my dd started she could not sit unaided, now she can walk on and trot by herself....I will shut up now but feel free to shout if you have any questions..

chatee Thu 03-Nov-11 21:42:33

hiya Sevenfold,
hope you lurk and post as it would be nice to 'chat' with a parent of older child with cp

inhibernation Thu 03-Nov-11 21:50:09

Chatee - dd wears her splints most of the day. She doesn't seem to mind them thankfully. I wish I could say Physios were our friend sad Physio itself might be but dd is at the age where she dictates what she will and won't do and as you know, a distressed CP child is a stiff child! But we try to incorporate it into play and we aim for an hour in the standing frame each day. So glad to hear that your dd likes swimming smile We just enrolled dd into a class which is held in a hydrotherapy pool - not SN but chose it cos the water is warm. Am really hoping she can learn to swim as the independent movement would be so great for her. She is on waiting list for RDA - excited about that. Think she will love it smile

2old2beamum Thu 03-Nov-11 22:04:44

Thankyou for your interest inhibernation and itseasyifunohow. No I don't think it is intrusive please don't bugger off. I feel very isolated at times, his problems are many. He has fits 5-6 a week (but how many are missed)
SENSE have been brilliant especially over education (he has a 1-1) BUT has no SW. Our biggest problem at present is neurogenic pain he is so distressed it makes staff at school cry, his ma and pa too!
We do get respite so we are grateful. Thankyou for letting me ramble on. xx

anonandlikeit Thu 03-Nov-11 22:04:54

inhibernation - We carried out the majority of ds2's physio in the bath. I found he tolerated stretches much better in water. Then once loosened a bit we would continue it when drying him off. Lots of tiggles & rough & tumble play & most of the time he didnt even notice.

It also meant he was very clean as we bathed him night & morning smile

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