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

Your DD sounds fabulous Madwoman ! Good luck for her in the ski team, and good luck to you entering the teenage years lol :)

Ah I should have realised you'd have tried the skating frame well skiing is far cooler than skating anyway. She must have real balls (iyswim ) to do ski racing - I find it absolutely terrifying.

madwoman she is at nursery at mo so about to turn 4, starting Year R in September. So hoping time is still on our side. Your dd achievements are great she sounds fab .

Does everyone find their DC get very very tired. More than they typical child, My dd still needs a long afternoon nap otherwise she tends to go a bit hyper and naughty, (quite typical of her age I know) but also find her sitting/posture becomes far more slouchier and wobbly?

Issues with muscle tone can often lead to tiredness as they are literally using more energy than everyone else to get low tone muscles to work (even just for sitting up with low core tone). For nursery and then school we asked them to provide a specific place for carpet time/ circle time, where she could have back support. For a while they used her chair (Heathfield) when everyone else was on the floor as it at least gave her some support and helped to combat some of the tiredness. For fine motor too - we soon realised that in order to free up her fine motor, she needed more trunk support - if her core was stabilized and she didn't have to concentrate on keeping that upright/ steady, then it enabled her to use her hands better. So a case of determining what was the priority at any one time - obviously she needed to strengthen her core, but once in nursery and school, she also needed to be working on her fine motor skills more, so which was more important at any given time? (And all against the backdrop of preventing over tiredness etc)

She had a Heathfield and a standing frame at nursery, and we took her walker in every day with us. She's never used her wc at nursery or school except for day-trips - again, so that the LSA could push her for the long walking bit, and she could then transition to the walker when she got there, so she could better access whatever was going on. Saved energy and was a lot faster!!

You wouldn't believe it now, mind. We are at the point where I have to insist she goes to bed, as I can tell she is getting tired, but she will still try to watch one last episode of Big Bang, or master chef, or whatever

Summer yes yes yes. Tiredness is the main issue we have with DD. She comes out of nursery shattered. She will have a nap in the buggy on th way home but not every day, and it's only 45 min-1hr and she only sleeps 10-11 hours at night. She is just not getting enough sleep - it might be enough just about without the CP but it is not enough with it. She says sleeping is boring . And yes, the result is hyper/naughty behaviour which then descends into crying and tantrums. And wobbling and falling.

madwoman that is a really helpful post, thank you! I hadn't thought that extra core support might make DD less tired, and also help with her fine motor skills. I had thought about letting her sit down more but not where/how she sits, iyswim. Mealtimes are a particular problem time for us (she falls off her chair, refuses to self feed etc) - and now I think about it, her chair is very "perchy", no support at all. I will think about other places she could eat, and will alsp speak to nursery to see if she could sit with more support at circle time. Not sure if there is a way to do that without special chairs?

Circle time can be just as easy as her 'place' being against the wall/ bookshelf/ anywhere she can lean. Corners are better as you can get support on two sides (there used to be a whole host of corner chairs available - no idea if they do them now!) but any support is better than none.

We actually had an adapted Tripp trap for dining chair from OT (regular Tripp trap with thigh rails and arm supports that provided lateral support) and a lap belt. The lap belt was mostly for slithery days to keep her bum back, and tbh it was the first thing that we stopped using. But the sideways stuff was v helpful to prevent toppling/ sliding, but also for lateral support. And it freed her hands up so that she could use her fine motor for trying to work cutlery lol.

Ah yes, of course!

We really need to see an OT don't we!

OT loaned us a Jenx corner seat from age 1 to about 2.5 years. www.jenx.com/product/corner-seat/

Our physio recommended a wedge cushion to sit on to aid posture (DD2's sat with rounded shoulders, especially when tired). We bought this, and she sits more upright with improved posture. www.nrshealthcare.co.uk/bedroom-seating-aids/comfort-posture-aids/pillows-raisers-wedges/original-seat-wedge

We have a Breezi High Chair on loan from OT. We've had it since DD2 was about 18months and it 'grows' with her (she's now 4 and lots of growing room yet). We use it without the table attachment now, and we call it DD2's 'tall chair' (as opposed to 'high chair' which has baby connotations), so she can sit supported at the dining table with everyone else. We did have a good high chair, but the OT said the NT chairs were not supportive enough for DD2. We have this one: www.essentialaids.com/children-with-disabilities/paediatric-seating/breezi-high-chair.html

The Jenx corner seat: we only stopped at 2.5 years old because DD didn't need it anymore after that point. They do go bigger than this size.

Summer yes, DD2 definitely gets tired quicker than her peers.

We do the same as Madwoman: DD2 uses her wheelchair on the 'commute' to save her energy for the actual activity for family days out or school trips.

And ditto Madwoman on trunk support. We got the Breezi high chair from OT so that DD2 could concentrate on her cutlery and cup handling, as she spent too much effort just trying to sit up properly. Eating improved almost immediately. We now do all painting, drawing, playdoh, 'homework' etc at the dining table in order to use the Breezi chair.

She has 2 different support chairs at school - one provided through the school SEN budget, and the other on loan from OT.

Lol, looking at it, that breezi is exactly the same as ours - I think Tripp Trapp makes them. Ours has the hip guides/ thigh things and arm supports. We didn't ever get the table attachment as we put it up against the dining table straight away. The good thing about them is that like a Tripp Trap, you can just adjust and carry on using it to adult. We had a table attachment for the Heathfield though (she chose the purple cushions lol).
She did go through a wedge cushion phase too I think, but then it was more important to support the trunk, so we left that behind...

They are good madwoman, just the right support without being too obtrusive .

Goodness, you can tell I had a weekend away with mass postings on my return last night lol. Apologies for the disjointed information download lol - I had just driven round half the UK and was proper whacked lol. Morning everyone .

Thanks so much! I will look at the breezi chair - sounds fab, and yes good point thst we will want it in future for homework etc not just eating.

I have thought about a wedge cushion, to help work DD's core, but wondered if that would actually be more tiring for her?

Whew breezi looks good but super pricey!

Wondering about a tripp trapp (lots available 2nd hand near me) with non slip stuff on the seat and footrest as a compromise? Or possibly the Stokke Steps chair which might be better as it has sides (can't link easily as on phone).

Thinking out loud again!

Our Breezi has the extra support back that comes as an optional extra, so even more expense. I'd get that OT referral first before buying anything, as we'd hate for you to be wasting money on inappropriate equipment. They'll advise on what's best for your child, and they may also be able to provide it (on loan from the NHS) as ours does (it's all non-means tested as all NHS provision is). They're busy (so you might have a little wait), but they have been so good to us, really working with our concerns and making a massive difference in DD2's environment. x

You're right of course, I should wait fot the OT. Just got a bit carried away googling after DD had yet another big fall off her dining chair, splat on her forehead However I've remembered we have a booster seat at my mum's which has sides and back support (a bit) so will try that for now before any shelling out! Might also try some anti slip stuff on the seat of her current chair.

Hi long time since we've posted. Good to hear how everyone is getting on. My ds is more severely affected than many but we find the trip trap fine at home for most things, eating drawing etc. he does have a wombat at school which is much more supportive, but also more different iyswim. As he has got older we also now use a saddle chair from bambach which is good for those who are diplegia as it keeps a stretch up as well as challenges balance etc.

On a separate point mini if your do would suit private school better the ECHP should provide the support for a private school. Not the transport or fees ( unless they can't do mainstream) but the extras TAs, salt, ot, physio etc. that is the theory at least, and in my area private schools do take children who are disabled, but you quickly get a feel for what they can do. Ds goes to his state primary and it is great, but in the end we chose it because it was flat! Go and see the schools, talk to them and trust your instincts.

Sorry to hear about the fall Hope your DD is alright xxx they can give us such frights

waves at old friend whereonthestair

She's fine thanks everyday - only cried for a minute - she is so used to falling. used to be worried someone would see all her bruises and think it was us!

thanks where that's really good to know re support in private schools. Looks like it will be private, the one I like seems like it is pretty SN friendly iyswim though DH still prefers the pushy competitive one god knows why. Again I don't know if DD would get a statement as she is very mildly affected, but I guess she could still need a fair bit if help at school even so.

Get a big roll of Dycem from the OT when you get there we had it on seats, under plates, everywhere. I actually need to get some more to use under chopping boards and whatever, as the whole wielding knives thing is terrifying enough without having everything moving independently. Eek.

Dycem - is that the foam matting stuff you get to line drawers etc in caravans? I took some into school for underneath DD2's dinner plate lol. Anti-slip stuff, yes?

Lol, it's antislip mat for sure - not really foam/ padded, but I'm not an expert on caravan drawers!! Sounds similar anyway! You can also get it quite thin and I've seen OTs bind cutlery handles with it as a trial to see if it makes it easier - that kind of thing.

Oh, OK I get you. Not the same stuff, but similar functionality. You're missing out if you're not into caravanning lol hahahahaha Boy, I know how to live the high life….