Support/Information sharing thread for parents of children with CP - part 3

[itsnothingoriginal]

So here we are - thread number 3 to provide information and a source of support for parents whose children have been diagnosed (or not yet dx) with Cerebral Palsy.

Welcome to parents finding us for the first time and welcome back to any who have posted before

That 1 looks just as good . Think they'll be much of a muchness. Go for it x

Baby ergo carriers are good. We have one, just recently purchased because I was finding dd too heavy on my front in the baby bjorn. DD feels so much lighter in this carrier.

We still use our ergo for ds who is 4! It's the best thing we have bought.

We are several years down the line post diagnosis. We got it at 11 months and I suspected but dh didn't. In our case we were just told straight out. No wait and see, nothing like that but ds is quite obviously affected so probably worse than many and cp more obvious.

We have just changed paed. I had been unhappy for a while, previous paed very nice but no real ideas, clues about treatment, consistency etc. difference is amazing and I really wish we'd done this ages ago..

We have an ergo carrier too.

Bedsheets4knickers - we have physio on Tuesday too, I have got lots to ask her this time! Going to be asking about her foot turning outwards/weak ankle, a pushchair and a different chair for home. We currently have a Jenx corner seat.
Also, Chloe is trying to walk when we hold her hands now, so i will mention that - i think our physio wants her to stand before getting a walker though.

Hi, just in case it is of interest to anyone, (please ignore me if this is old news to you all): my dd's feet turn out as well, which we used to put down to weak ankles, too. But at our first appointment with our paediatric surgeon, he explained to us that it happens due to her calf muscles being shorter than they should be, which stops her from making full use of the first joint in the ankle (responsible for up and down motion). In order to compensate the limited range in that joint when taking a step, the joint underneath (the one that lets us turn our feet inwards and outwards) lets the foot turn out more than it would otherwise, to enable at least some kind of stepping motion.
Does that make sense to you guys??

Jokat. That's certainly new information to meet :-) dd turns her feet out a lot more when she's not wearing shoes. In her shoes they actually look quite straight. Do you find that??

Me even

hello losing patience with dd as shes refusing all attempts at physio and has done for the last couple of days. 20 months is such a tricky age because they are so strong willed but i know shes close to walking but she just wont help herself at the minute. shes lost quite abit of trust in me because when we started the physio it was quite uncomfortable for her and she just sees me as the bad guy. how can i build her confidence at standing when she just refuses to try. i know im probably sounding very harsh, hasnt helped her physio appt has been cancled again today as physio is sick. ive also missed my sons sports day. im in such a foul mood with this whole fucking situation.
can anyone help with confidence building tips at standing. i have gaiters which would stop her sitting back down but also restricts her movement and we are trying to get her to cruise abit more so not sure gaiters are the right way to go. she also hates them which in then adds to the trust issues with me.
ANOTHER ISSUE, shes becoming slightly more withdrawn around other children i think shes feeling vunerable and smaller. im not sure if we put her in at my ds nursery 2 mornings a week when he goes back in september or to keep her at home with me. i want her to see how other children stand and walk but if im there she just comes and clambers on me. Do i push her into a slightly uncomfortable enviroment or give her another 6 months at home. what would you guys do. shes very able in her fine motor skills and speach so she can get around just fine.
what would you guys do???

sorry for the rant, mu mum wasnt home when i phoned she normally gets the brunt of it x

Bed sheets I would send her to nursery with other children. Ds still can't walk and is definitely more vulnerable around other children but nursery is great for his confidence and to give him a pull along so that he tries to keep up with others.

Ahhh I feel so bad about moaning yesterday , I was annoyed at physio cancelling tbh. Today I tried to do row row your boat with her she refused. About 20 mins later she came stood inbetween my legs to do the song. It's like she was saying " mummy you don't always choose "
I'm def siding with putting her into nursey in September . If it doesn't work out I can pull her out x

hi all. Sorry for the silence dd got admitted to hospital.

so now I basically only have TODAY to get a carrier.... I've just tested the Ergo and the littlelife cross country none really seemed to give the latteral support she needs.... dd is very slim so I could literally fit my clenched fist between her and the side of the littlelife carriers I tried

has anyone found a carrier with good lateral support?????

I'm out shopping right now looking
I need to get one within the next hour

Gone hope dd is recovering well, would a moby wrap work ??

Hi bedsheets (LOVE your name btw!), yes her feet do turn out more without shoes than with them on. Not quite sure why. I remember, last summer when she walked on a sandy beach, her feet looked like flippers! I can't wait to see if there is a difference in that this year, they are certainly much less falling inwards now when she walks barefoot around the house and garden.

Hi all,

Hope you are all well.

goneHaywire - i hope your daughter is feeling better now. x

Jokat - thats really interesting about the calf muscle and ankle joint, that does make sense. Its only one of Chloe's feet that does it, the other is straight. I got the physio to check it, and she said it is because she is shifting her hip and leg backwards - but said her hip seems fine and she does have a good range of movement in her ankles.
Yesterday we saw the registrar (as paed consultant was off sick) and he seemed to think it was tightness in the achilies tendon. He asked if the physio had ever mentioned that and she hadnt :-(
Thinking about it, i dont think she does have a very good range of up and down movement in her ankle.
Also her feet havent grown at all - at least since March/April when she got her piedro boots :-(

Bedsheets4knickers - dont worry about the rant - we all need to do it every now and then xx
I would put your daughter in nursery, my daughter has been going since 6 months old and its done wonders for her. Her fine motor skills are good and her speech is not too bad, its just her gross motor skills hold her back. She has learnt so much since she has been there. She is still shy around adults she doesnt know and kids she doesnt know, although saying that when we were at my niece's 2nd birthday party at the weekend, Chloe took a good swipe at her when she wouldnt share her toys - and although there is only 4 months between them, no word of a lie, my neice is the size of a 4 year old and has been walking since before she was 1.
So what im saying is, although she is vunerable in terms of gross motor skills at nursery, she has sussed out how to look after herself lol

Does anyone who's child has special nightwear actually not use it??? Every night I have to strap my dd 20 months into night boots and gaiters. It breaks her heart and it's breaking mine. She's so bloody little she doesn't understand. She managed to get 1 side off tonight she stuffed it down the side of her cot. Tbh I don't blame her. Bed should be comfort she does so much physio during the day. Bed I want her to scrunch roll bend as she pleases.
I don't think I can keep doing it to her!!!

bed - my 6 year old has night gaiters and splints. We call them evening splints as she can't sleep in them at all. We aim for an hour every evening before bed. She is delighted as she gets to watch TV or use the iPad. during the holidays we are managing some time in the morning as well as she has just gone through a growth spurt. I can't even begin to imagine trying to bride or reason am under 2 into them. In my opinion sleep is more important.
At your DDs age we had a standing frame. If they are in that, especially if tilted forward they get the same stretch and are also weight bearing. Again we used to aim for an hour, we would play catch, do messy play etc. We also aim for an hour otherwise you spend more time doing up and undoing all the blooming Velcro than they spend stretching! Hope that helps

Hey, we've stopped them at night. It was just too much for all involved x

Can I just ask what everyone is wearing on their childrens feet in this hot weather?? My dd has afos which she is supposed to wear 4 - 6 hours a day and piedro boots for the rest of the time which we have been doing religously. This week the strap on her shoes broke which she wears her afos with. I'm sure you all know that finding shoes to fit over afos is not easy so this week she has just been wearing her piedro boots.

At her physio session yesterday her physio thought that she was walking inwards. On examination her ankles have sores on them. Her boots are getting too small for her. She has been fitted for new boots but it is a 12 week wait between fitting and receiving them. I have been phoning explaining our predicament but they haven't been very helpful.

Normal shoes don't work for her as her foot rolls in. I feel really guilty putting her in clumpy boots but her physio says there is no alternative. I just am so jealous when I see other little girls in pretty summery sandals.

Hi, when dd was wearing afos, I almost always ended up buying boys' shoes to go over them, there were always a lot more strappy shoes to choose from. Some of them were really quite nice, in brown or a sandy colour, and they tend to be wider than girls' shoes. Could you have a look if you can find some boys sandals with velcro straps that go over the splints? And couldn't she, maybe for an hour or so, perhaps on the weekends, wear a really pretty, girly pair of sandals, even if it is just at home? That might be really joyful for her and would surely not have too much impact on her feet?

And also, I am convinced that most cp children would benefit from going barefoot for at least short periods of time ,especially during the summer when afos make your feet really sweaty. I know for a fact that my dd's feet would not have improved like they have if she'd carried on with her splints, because her muscles wouldn't have had as much of a chance to develop and get stronger. It (being barefoot a lot) also helped immensly with the hypersensitivity she had wrt her feet.

And also, I am convinced that most cp children would benefit from going barefoot for at least short periods of time ,especially during the summer when afos make your feet really sweaty. I know for a fact that my dd's feet would not have improved like they have if she'd carried on with her splints, because her muscles wouldn't have had as much of a chance to develop and get stronger. It (being barefoot a lot) also helped immensly with the hypersensitivity she had wrt her feet.

Sorry, not sure why that appeared twice

You can buy peidro sandals from Gilbert and Mellish. Or Memo is another supportive brand. Fake crocs are great for over splints in the summer and you can get lots of colours to co ordinate with different outfits.

Piedro do lots of funky wee boots these days. What about something like this www.gilbert-mellish.co.uk/Shop/Products/piedro-nextstep-2266-purple-nubuck/1530.aspx Not cheap but worth it if you are really struggling.