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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

ilovecatsanddogs Tue 11-Dec-12 22:13:01

Hi - I am brand new to this site, dont even know if I am posting correctly, but was so so so pleased to find this thread. I am mummy to a 22 month old with spastic diplegia. I have only read a few posts so am sure I will now be up half the night reading the rest. There has been so little info so far for us, and we have had to find out everything we needed to know on our own. its been a little lonely, so this is why I am pleased to have found this. Will post tomorrow and introduce properly xx

sneezecakesmum Tue 11-Dec-12 22:29:40

welcome ilovecats smile

Tons of useful info here. Its been a lifesaver and an inspiration to talk to people in the same situation!

madwomanintheattic Tue 11-Dec-12 22:51:17

Don't forget to sleep as well! We aren't going anywhere! grin

Dev9aug Tue 11-Dec-12 23:35:26

No worries jokat, it is mumsnet after

bobbyblueeyes Wed 12-Dec-12 09:07:29

Hi,new here. Can i join? I have a son just turned 2 who was born 8 weeks early. We started physio in april of this year. He can now sit unaided pull to stand and new trick is a few steps with his walker! We have only seen a paed once who said the likely cause was a brain bleed at birth causing bilateral spasticity in both limbs although right leg a bit weaker both stiff though. We are waiting for MRI.I guess he is more spastic dilpegia than hemi as arms seem unaffected! We pick boots and gaitors up on 21st dec and do daily hamstring and adductor exercises whch he hates lol! Bit nervous about gaitors but we will give them a go anything to help!

thereonthestair Wed 12-Dec-12 10:19:05

welcome bobby and ilovecats. hope you find what you are looking for and do keep posting to ask whatever questions you have. There are tons of us here with children at different ages and with multiple differences in the type of cp, severity of cp, and experience of different treatments

bobbyblueeyes Wed 12-Dec-12 10:25:24

Hi thanks for welcome! Anyone used gaitors i posted a seperate post. Ive heard dvds are good for distraction. Anything else? Also we have just been referred to portage and salt.. any experiences? We are under opthamology and alss due to see a orthopedic surgeon. Although i am sure surgeon referral has been lost or really delayed as been three months and heard nothing!

Verybusymummyof2 Wed 12-Dec-12 14:21:01

Had our physio assessment. And I knew there would be no immediate answers but have come away feeling less upbeat Than I had been feeling over the last few days.
Her overall findings were, variable tone in all her 4 limbs. Ranging from normal, to mild to moderate high tone in all 4 limbs? Basically she said there are times when her movements are normal, but also times when they are not. With her left side being worse than her right. She also noticed hat she sometimes has the assymetrical tonic neck? Is anyone familiar with this??
She has given exercises, trying to turn dd arms and hands when she holds them "abnormally" , tummy time and pulling to seating position. She said her head control was pretty good.

madwomanintheattic Wed 12-Dec-12 14:45:38

ATNR is very common, and doesn't disappear in babies until around 6 mos anyway, so this would be (at the mo) a very mild delay. Dd2 had retained ATNR for quite a long time, but I think it's probably disappeared now... Dd2 was always weaker on her right side (she wouldn't use her right arm and hand out of choice for about three years, including mid line stuff... She would reach all of the way across her body to try to try to reach for the toy or whatever with her left, wherever you put it. We used to restrain her left arm during physio to encourage the right one to catch up. She uses them both functionally now, but is obv left handed for writing etc

All sounds reasonably good so far. The fact she has given you exercises to do is good. When is she seeing you next?

(These appointments are hard. But tbh, the more they see, the better - the more intervention you get now, the more hard wiring the brain can do to develop functionality. Brain plasticity is a wonderful thing, and dd already has such a great ability, you can build on this. I was slightly to the right of Attila the Hun with physio. grin nicely, of course, but it was baby boot camp all the way. smile)

Have a nice cup of tea and a biscuit, and then go and get some fresh air. Show dd the snow. Next step done.

ilovecatsanddogs Wed 12-Dec-12 18:41:17

Hi again, well I still have not read all of these posts, but quite a few!! My little boy was born 7 weeks early and I knew from quite early on that something was not quite right, however, I was told that he would catch up, blah blah blah, until I finally saw a different paed when he was 15 months old who instantly diagnosed spastic diplegia. He sees physio once a week (usually) and has been referred for botox. He has splints which he hates and gaitors which he hates. He only sits in the W position, which the physio at first said I should discourage, but now she has changed her mind and tells me to let him. He is no way weight bearing, but will tolerate his splints in a standing frame for a bit. He is incredibly tight in his ankles, and sometimes I cannot stretch him. I wonder if any of you can kindly tell me what sorts of other treatments you had for your children, and what you thought. I have taken him to an osteopath twice, which I have to admit, I have not got the faintest clue what he did, but my son seems to be a bit straighter in the back if that makes sense? I have also thought about taking him to see another physio for another session a week, as I dont seem to be getting anywhere with the NHS. I probably sound really ungrateful, but the amount of times she has cancelled me is getting a bit silly. Once again, what a relief to find this site, and thank you for your welcomes xx

Jokat Wed 12-Dec-12 20:12:07

Hi Bobby, with gaiters on we also played ball games (me mirroring her position with legs spread wide and our feet touching), rolling and throwing the ball to each other. Also looked at books, built towers with bricks etc, encouraged her to pick up rings to put on a stacker which I had scattered near her feet, always tried to think of things that make her bend forward to reach for things, which maximised the stretch in her ham strings.
When I sat closer to her and put my outstretched legs over hers (my calves over hers) we played row row row your boat, which was brilliant in terms of stretching and she loved it.
Hope this helps smile

Jokat Wed 12-Dec-12 20:28:18

ilove I went to see an osteopath with dd1 as well, for a couple of sessions. This was just before physio kicked in and I can't quite remember what he found to be wrong with her, it was something along the lines of her being a bit more tensed up on one side of the body than the other (she also had reflux which fitted in with this finding) and that this affected her inner core. After two sessions he couldn't find the asymmetry any more and I stopped taking dd. A few days after this second seesion she started crawling properly whereas she'd only managed commando style up to that point! Maybe it was coincidence, but maybe it wasn't...
DD1 hasn't been given anything else apart from physio and occupational therapy, but I'll put her on the waiting list for horseback riding as soon as our nearest disability riding centre re-opens said list.

bobbyblueeyes Wed 12-Dec-12 22:52:46

jokat-thanks thats great def the sorts of things i need! We will give lots of things a go. He loves rolling balls and reading so they will be good.

madwomanintheattic Wed 12-Dec-12 23:21:39

Same as jokat with the gaiters - keeping your feet touching stops the ball escaping wink

Dd2 had cranial osteopathy, we tried homeopathy for drooling (didn't work - joyrides were better- she was allergic to hyoscine patches) we also took her to a chiropractor for a year (she was walking by this point). It was all interesting, but pretty non conclusive, tbh.

She actually got far more out of ballet (she started a class before she could stand unaided, lol, she had to hold on to stay upright) and still dances now. We got a lot of support from physio for this, as she could see the benefits. She does two 6 week sessions of riding a year. Se periodically does swimming lessons, but still swims like a brick...

Jokat Thu 13-Dec-12 00:11:30

O yes I forgot about ballet, my dd has ballet lessons as well, and weekly swimming.
I think regular massage is also benefitial. I have to admit that I hadn't incorporated this into our daily routine, but we've had issues with dd's hypersensibility on her feet lately (which had been really bad but got loads better after some OT input and then we kind of left it at that). So about three weeks ago I started massaging her feet, not stroking them as she couldn't tolerate that, but just holding them, applying pressure through my fingers, then taking fingers off, putting them down in a different place and applying pressure again. DD loves it and now asks for me to "hold her feet" and she is already much less sensitive when we dry her feet with a towel, I can now touch her toes without her flinching and the skin problem between her toes seems pretty much gone.
Sorry if I've just stated the obvious here blush but maybe it'll be helpful to someone smile

sneezecakesmum Thu 13-Dec-12 19:49:05

Jo. re the foot thing. DGS had brief vacant episodes between 6 months and 10 months and loud/sudden noises set them off but also touching the bottom of his foot! He's 4 now and no longer has any foot issues. They have tons of nerve endings (like the hands) so its not wonder!

To all new people. If you get no other book get this one here from Amazon It is the best book ever for helping CP children smile

It has multiple photos to help parents carry on at home what the physio and OT do - and lets face it parents have to do the majority of work with CP children! Also tells you about the ATNR. Assymetrical Tonic neck reflex grin DGS still has it but it doesnt interfere much with his movements - arms and head only, legs dont get involved!

nelliebell Fri 14-Dec-12 01:55:20

Greetings from the USA. I have been reading many of these posts and I am so grateful I was led here. I have a lot of great tips to start researching.

I am in the process of adopting my 2 yo foster son. He has spastic quadriplegic cp. He has an amazing personality and is very bright and determined. Unfortunately, he can't roll, sit, stand, walk or talk, but I have been encouraged to see that some of your quad kids have been able to speak and walk with assistance. So, I am going to try to have hope even though the doctors say that he will not speak or walk. He understands almost everything I say, so I think that is going to be very helpful because I have been able to talk him through how to move his body to accomplish tasks.

Thanks for sharing your stories, it's been very encouraging and comforting.

madwomanintheattic Fri 14-Dec-12 01:59:41

Nellie! So glad you found the thread! I wondered if you were my side of the pond wink

nelliebell Fri 14-Dec-12 02:34:11

Me too, thanks for letting me know about it! smile

madwomanintheattic Fri 14-Dec-12 03:12:43

You are the second US poster on the thread - wentshopping pops by occasionally, too. smile. I'm in the great white north. grin <not really. Alberta. But we have got lots of snow.>

inhibernation Fri 14-Dec-12 07:50:21

Welcome to all newbies <waves> I'll be back to catch up....

Just wanted to let you know that we finally have the news we've been waiting over a year for .........dd is on the waiting list for SDR @ Bristol :-)

sneezecakesmum Fri 14-Dec-12 11:20:24

Inhib. Fantastic news about DD. you were so determined right from the beginning to go for SDR grin. Just goes to show how important parental involvement is.

DGS is a quad affected boy and said his name twice yesterday. Very unclear but shows if you keep on working on things they come right. Have also ordered a book on makaton to reinforce language.

thereonthestair Fri 14-Dec-12 12:44:35

Inhib fantastic news. Do you know how long that waiting list is atm? Have you got funding sorted? If not I presume you'll ink to a justgiving page soon. grin

madwomanintheattic Fri 14-Dec-12 16:58:44

Oh, sneeze, speech! Dd2 was so late but we can't shut her up now!

Inhib, great news about ADR, too. Wow, merry Christmas indeed!

madwomanintheattic Fri 14-Dec-12 16:59:17

Auto correct. Bah. Sdr

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