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

[inhibernation]

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

Bump!

Did anyone notice that the first part of our thread title has been copied?! Should have copywrited it

think its got several copies inhib

m.johnlewis.com/mt/www.johnlewis.com/Shopping/Product.aspx?Type=SKU&Id=231472718

Seriously thinking of getting this. dd has outgrown her maclaren buggy and I don't want a major cos it doesn't recline. The swifty is 1k - a scandal!!

Definitely get that, we have the Elite for ds1 and it is brilliant, very comfy for him, but I still regret not buying the mini as it has the same qualities but a lot less bulky.

Ooh thanks Dev Can I ask you about footmuffs?! I want one that is long enough for a 3-4 yr old or even taller still, yet fits the buggy and doesn't interfere with the folding mechanism

Hi ladies, can't help with big footmuffs I'm afraid!
I was wondering if any of your dc have selective mutism?!? My dd has some perfectly normal friendships with children of my own friends, but for the first tenor 12 months at pre-school she didn't speak to a single child there, then she finally started talking to a lovley little boy who had talked at her for EVER as he was so fond of her, but then he went on to big school. This school year, she became friends with a lovely set of twins and this week finally started talking to them, yippiee! But not a word to any of the others, if they talk to her she'll either turn her face away from them or just blatantly ignore them. She does speak to several of the teachers and doesn't mind at all speaking in front of the kids to a teacher. So I am wondering if she has selective mutism as she seems to fit the profile to some degree. Our OT has referred us to speech and language therapy and we are now on their waiting list.
I've posted about this in children's health as well but wondered if there might be a link between that and cp. Have any of your dc had similar problems?

This is interesting. I wish I knew the answer but it almost seems like she only talks to those who she deems worthy :-)

I think a few of us could take a leaf out of her book :-)

My dd doesn't do this but she gets upset if anyone is near her on climbing apparatus

inhibernation maybe these people can help, they do custom foot muffs. Snunkie

Inhib we have the mini. It's fine, lightweight, not bulky BUT..... it is a right pain to get DS to sit up in. the seat is not supportive at all and it has a natural recline so is really poor for DS middle/core/ability to see. We did also have the foot muff. Complete waste of money in my opinion. made it really bulky and heavy didn't interfere with the folding, but did interfere with the straps.

Thank you Dev and There

There - I think your ds is younger than dd so I can see the issue with him not being able to see out of it. dd could see ok. She looked fairly comfy in it but I'll check that again. I think it's the only manufacturer that caters for an older child so we haven't got many options. I am defo not paying 1k for a pram. I'm also a bit in love with the Aubergine city mini!

I meant 1k for a SN pram. Wouldn't pay that for any pram!

Also dd doesn't use a pram that much - just for school run/when tired. We have to coax her into a pram

I can't remember how old dd is, inhib, but can I just say that that here, the 'needs a recline and is too big for a standard buggy' phase was quickly replaced by 'needs to be sitting up as the recline makes being a nosy kid really frustrating and therefore struggling and unhappy'. The small amount of time that she wanted to sleep was a bit of a pita, but the primary need was for a suitably supportive and way more upright buggy that she could see out of and take part in the world actively, rather than being a passive recipient.

That incline was also problematic as it further complicated her use of her arms (low core tone really not helped by the recline, she was fighting against gravity to do be able to anything).

We initially ended up buying (what would have been) a massively expensive sn three wheeler. Dd2 hated it, she couldn't sit upright, and essentially fought it.
We ended up buying a major anyway, and just carrying a rolled towel to use as a head prop when she needed to sleep. It was by far and way the most age appropriate solution.

The recline sn models are fine for v complex children with little purposeful movement, but for children who need to be experiencing and taking part in the world from a sensory pov, I don't like the ones where 'upright' is not an option, iyswim.

Well, dd2 doesn't. . It's horses for courses, though.

yes my ds is younger, and to be fair has had the mini (as a travel system) since he came home from hositpial at 4lb 14. So it has stood us in really good stead. But it is now we keep thinking of replacing it.... interesting to see that you think it might work for your dd as she is bigger though. maybe I will hold off for a bit

We have a mini city for DGS. Fits a small 4 year old! We bought it off ebay and it looked like new but we have a Swifty from wheelchair services. The mini city is for quick jaunts when the Swifty, which weighs a ton, is too much of a faff. Mini City is probably the best option as it is so roomy and reclines but only for short periods. Check with wheelchair services you may be eligible.

I have been reading up about your experiences and have found them invaluable. ds2 is doing well so far, fingers crossed. I would like to know what should we be expecting in terms of services. so far we have had..

1. Physio fornightly (NHS)
2. A joint appointment with the OT and physio where the OT referred us to the disability team for an initial assessment.
3. weekly hydrotherapy, on and off with the NHS.

we have got Piedro shoes for him from the NHS and that's about the sum total of it. Is that quite normal or are we being shortchanged?

ds2 is 1y1m old.

Does he need slt? Have issues with feeding?

Have you applied for dla?

Otherwise, looks pretty normal, better than some!

Equipment needs met? Do you do a physio programme at home?

Standing frame? (Not sure if he's sitting independently yet? Sometimes spec seating supplied, but depends on individual development)

It's more to do with recognizing what he struggles with, and putting support in place to aid that, iyswim. There isn't really a checklist of 'things a kid with cp should have'... It's more, what does he need in terms of support in comparison to his peers?

Dd2 didn't get hydro until she was nearly 3. (nor did she get Piedros until well past two - the physio recommended an independent shoe shop that stocked supportive boots, so we bought our own to use with the standing frame from 12 months. )

Thanks madwoman

I think he will need SLT, I only realised that he has some serious feeding issues mainly to do with swallowing reading your responses on the other thread. but I don't trust the feeding salt in our area as she was rubbish with ds1, so may need to look for a private one soon.

I haven't applied for DLA yet, but its on my to do list.

he has started to sit independently for a few minutes, but very quick to topple over, it is getting better.

We see a physio privately at home once a week as he hates physio in the hospital, tenses up and the physio pushes, he screams the place down, tenses up some more and it just ends up being a waste of a trip. we just see the NHS physio every six weeks for review. He has a good physio programme at home, I would say at least 2-3 hours a day.

No signs of crawling yet as he always wants to stand and has recently started to take a few steps with support.

I have ordered the gaiters privately as the NHS physio wasn't so keen on going all out just yet
standing frame was mentioned but they have not got one his size, he is really really tiny.

How do standing frames actually help?

My dd had a standing frame to give the muscles in her legs (especially the ones at the back of the legs) a good stretch (intensified by getting her to bend over forward to pick things up off the floor while still in the frame) and also for her rotation. This was targeted particularly by getting her to turn sideways and reach back and up for things I passed to her which she then put into a container etc in front of her on a little table. So really it didn't just aid her rotation but also her inner core strength and overall stretching.

we also have a standing frame for the same reasons as Jokat. But didn't get it until DS was over 2 as he was crawling and cruising. In our case it was to give him the final puch to get the last stretch out in his hamstrings. To me it sounds like you are probably doing quite well with the NHS. We certainly never got that much support and currently even less as they have no resources. So despite botox etc we have fortnightly physio every third month. And that's kind of it so 8 lots of physio a year. No hydro, no ot, everything is done privately atm.

So my one real pice of advice is apply for DLA

Standing frames are really important for weight bearing too because if weight is not put through the hip joints the sockets that the top of the thigh bones sit in don't form properly and increase the risk of dislocation. It's the weight bearing which is the important thing.

DGS was lucky too also had hydro weekly for 3 years from 7 months old. Now stopped . Weekly physio, ot and portage. Physio is now monthly with OT and SLT. They even used to come to the house as he hated going to the hospital! Physio still visits at home. Also lots of equipment cluttering up the place supplied! AFOs too which he struggles with and piedros. Very much a postcode lottery.