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

hi stacey!
we're picking up dd2's splints on monday. she's hugely excited because dd1's friend has one. kids are sooooo weird. i remember the entire nursery fighting over a go on dd2's walking frame. 4 seems pretty old for dx, but i think sometimes they 'forget' to confirm with parents... and by that point they figure you've worked it out anyway.

canulas are a bitch, scm. dd2 screams blue murder if she wakes up and someone has the temerity to have left one in. they usually remove it sharpish as no-one can stand the din. so dgs is a superstar if he's tolerating it longer term...

Hi all - wow has been busy on here! Hope dd's splints are all she's hoped for and that little sneezecake is doing ok now?

Hi StaceyJane! Glad to hear your ds is doing well and so determined. I have a 4 yr old dd whose main 'obvious' difficulty is with running but she has low/ fluctuating tone.

Has anyone experienced joint pain with their dc? For the first time, dd is starting to complain about her knees hurting and I've noticed as she is growing again they look like they are giving way beneath her a lot. Is it a question for physio or GP???

Hi all. cannulas out and home later today. DD is bored stiff! DGS has a very distinctive high octave scream too but tolerated it all for end to end charlie bear and dip dap!

DGS hates the AFOs and pushes against them even more than usual, so we are a bit naughty about putting them on. walks with piedros but refuses in the splints so we have to work on that, but it does show here from everyone that kids with fluctuating tone can get on with them, so perseverence needed!

Not sure about knee pain? If survivingminiwinter is low tone, she may be having stretching of the supports around the joint making them lax. Have a word the the physio for sure, but also the gp, though it is unlikely to be fixable by a gp. I know an adult with hypermobile joints who wears supports but not sure re little ones.

Thanks sneezecakesmum - that sounds like the case with dd's knees. She's very hypermobile which has been a good thing so far in preventing worse stiffness but I guess there had a be a payoff at some point

Hope you can persuade DGS to persevere with the splints...sounds like he needs to go and play with littlemadwoman when she gets her new ones!

Welcome stacey

Sneezecakesmum - glad dgs has had canulae taken out. ds (my older child) had one in recently pre and post op - hated it. Didn't bruise though - quite impressed about that. Hope things go well this year and like you say, would be great if he can have the peg line out next year.

madwoman - you highlight well how important parental intuition/knowledge of their child's needs is and in equal measure how successful care can be when it is given in partnership with the parents.

The opposite is true too - so we finally "sacked" dd Physio. Feel mixed emotions about that but mostly relieved that we've done something about it. Found out that dd's brill private PT is leaving - managed to lose both PTs in one week!

Good news though - dd's appt at Bristol has come through. Woo hoo

blimey, inhibernation. two physios in a week! do you have anything else lined up? (what's the appt in Bristol for? brain complete mush this week)

so, just got back from school parent's interview. hmmmmmmmmmm.

lots of chat about how best to help dd2 organise herself. good. she really struggles with accessing her books/ papers/ desk/ bag/ getting stuff out/ putting away etc etc. all important to try and simplify. i suggested he uses the net book and e-mails herself homework details rather than having to get out her agenda, get a pencil, struggle to write it in her agenda, put everything away. all fine. physio and ot are coming in on friday to review her desk/ chair. i'm going to go in as well and talk through. last time they tried to do it in the classroom during normal lessons and dd2 was pissed with the flashing neon 'this child is DIFFERENT' sign and all the other kids looking at her. she was not overly compliant, which is really unlike dd2.

anyway, more progress needed on the 'which files are easiest' stuff, and more discussion about how to deal with pe etc etc.

they are still keen for her to finish her 'all about me and cp' book, and are talking about publishing.

on the way out i realised where her desk is now. she shares a desk to the right of a right handed boy. she's left sided/ handed due to the brain damage and her issues with fine and gross motor mean that in this position, she is effectively penned in, and must spend literally all day crashing elbows. it's no wonder she can't organise herself, she can barely move without hitting her neighbour - she has a really wide swing as well. he must have the patience of a saint.

soooooooo, the look of horror on my face gave the game away a bit, and i think the teacher was equally horrified that she hadn't realised. desk change on monday.

surely teachers don't routinely put a left and a righty elbows together on a desk? even with nt kids? she muttered a bit about self-advocacy, but i think in a 'oh crap i did fuck this up' way, but dd2 is 8. with cp. it's not rocket science, is it? i asked dd2 how long she had been in that spot. it's been so long that she can't remember. she definitely wasn't there when the physio was in last, but that was way before christmas.

there are some things that it hadn't occurred to me i would need to be dealing with.

have a relaxing weekend, all.

madwoman - it is good that you are able to go into the school and advise. Not sure whether you work? I work part-time, quite locally. It's a full on job but I've been able to get time off for dd's appts. so far, so hope that continues when she starts school. It's important to keep that link going I feel.

Appt is a consultation for SDR.

madwoman - forgot to say how great it is that your dd might be able to publish a book about her experience of CP She sounds like a great ambassador for the job

I've just started a thread on the SN board to get info on what services are like in different parts of the UK (partly for selfish reasons e.g. do we consider moving - but also curiosity and to inform other parents). Please add to it if you can. Thanks

Thanks to those of you who had time to post on the other thread.

Did any of you see the SDR feature on Daybreak (ITV) today? 3 boys with CP who had all fundraised for their friends

hi im new to mn and am just having look around started reading this thread today still lots to read through its great though my daughter has cp she is 13. its great to finally find somewhere to talk to people who have a lot of the same issues and problems. will be back to read more and hopefully contribute something usefull to someone.

Welcome April We started this thread just for that reason!

First time posting on this thread, although I have been lurking for a while, I must admit! I have a 6 year old ds with spastic quadraplegia (legs more affected than arms), wheelchair user, attends mainstream school and doing well with full time support from 2 lovely TA's for his physical needs. He has so far had 2 lots of botoc int his adductors and hamstrings, with reasonable results. I've seen a few mentions of SDR on here (and also saw the Daybreak programme the other day). Has anyone actually had it done in Bristol (or in the USA), or knows anyone that has? We have just started down the road to getting my ds assessed, although he may not be suitable (due to having a diagnosis of quadraplegia), plus he was born at term and was not prem. Anyway, it's so difficult trying to see the future! We don't know yet whether he would or would not be offered the SDR op (we are only at the initial referral stage), but I really don't know what the difficulties might be in the future if he doesn't have it (I'm not really talking about independence or lack of it, more the likelihood of needing orthopaedic surgery etc). Anyway, hello all!

Hi dandlmum - welcome

dd is being assessed at Bristol within the next few months. She has spastic diplegia and was born prematurely BUT her Paed said thinking is now changing about suitability for other types of CP dx. Basically there seems to be growing opinion that it could benefit children with other types of CP. The biggest problem right now seems to be getting HCPs on board and getting a referral. dd's Paed was totally against it when dd was first diagnosed but she changed her tune 8 months later when the NICE guidelines finally made it to her team 1 year late! She's a nice lady - I don't have a problem with her.......but THE SYSTEM is rubbish. How can it be that the public are more informed than the professionals they are relying on to provide care for their children!

Hi to the new parents out there, StaceyJane, arpril69 and dandlmum...nice to here your stories of you little ones...welcome :) and i hope you all find this as much a comfort as i do, just knowing there are others out there who are sharing similar experiences and that you are not alone! Its nice to share the good times...the goals our children reach and the things that make us smile! But just as important, is sharing those difficult times...the times when you think 'why me!?' 'why?' and knowing we all have thought the exact same at points... Its nice to get things off our shoulders, brush ourselves off and carry on as we do :)

Hope everyones well?...ive been away again for a week or so. Had a quick read through past posts and its been very busy on here!

StaceyJane and madwoman, it is funny how children can be isnt it...you were saying about your children being excited about getting spints as other children have them etc... my little one has recently got a new supportive chair at nursery...and its pink!...so you can just imagine how all the girls fight to sit on it!...i bet my dd feels like a princess being the only one allowed to sit on it! hehe :)

madwoman re parents interview - i do think that it is awful that they hadnt picked up on your dd being sat next to a right handed little one...yet mention the need for her to organise herself better! I know its hard when you have a class of 20/30? (not sure how many pupils classes look after now?) but you still have to be making sure each pupil is learning to the best of their ability...and that goes for what kind of an environment they are being taught in also and their surroundings... I think sometimes 'the bigger picture' is overlooked! Its like you say, surely that isnt done routinely...and i suppose for more 'able' children, they would be able to say if they were struggling to write etc next to a child who was the opposite handed in writing...but that is even more of a reason why this should have been picked up sooner...such a simple thing as having the space at her desk could have helped her to organise herself better all this time. But i suppose its a good thing that you get the opportunity to speak to the school and discuss such things and get them sorted! Hope they find/have found her some room, so that she can be taught and learn to the best of her ability :) Fab news about her book too...and great name for the book :)

sneezecakes just been reading through your posts regarding the PEG with your DGS...must have been all such a worry!...totally understand you hating cp...and defo hating all the stuff that goes with it, its just not fair!...the things they have to go through! I hope his weight starts to sort itself out so its something less to worry about! Glad to hear the PEG went as well as can be expected however...and the pain was kept under control...and nice to hear that they eventually took those horrid canulas out! Hope he is doing well since hes been home?
survivingwinter re joint pain- my dd has never seemed like she is in pain during the day when shes on the move crawling...and is a little young at 2 years, 4 months to tell me if anything hurts... but on some nights, after i have put her to bed she will wake up screaming in tears like she is in pain! I don?t know whether its teeth, it could well be! However i have thought the same as you...maybe it is joint pain! Which may be due to her being on the move all day...then when her muscles start to relax they may cause her pain (i don?t know :/ ) but i was going to mention it to her consultant at her next appointment.
inhibernation i hope things sort themselves out re your dds physio and she gets a nice one...whether that be on NHS again or a new private one! Its good that youve had that confidence to do something about her NHS one and ?sack? them...your doing the best for your dd to make sure she gets the best possible care and her needs are being met, well done :) ! Will take a look at your other thread on the sn board at some point also and respond... and i am totally with you regarding the SYSTEM being rubbish!! Really hope the appointment at Bristol goes well...look forward to hearing the outcome of it :)
Sorry again for another long reply, i do go on... Hope you all have a lovely weekend...

has every one seen the posts about the carers allowance changes in regard to working tax credit , if you are part of couple who get working tax credit and only work 16-24 hours between you may apply to you.have a look.

For anyone around tonight - there is a programme called 'We won't drop the baby' on BBC1 at 10.40 about parents, both with CP who are raising their children. Looks good...

Aw, I wish I was in the uk! That sounds great. We're popping back next week, I might see if I can get it on iplayer...

Well, she has her splints and is managing ok... And it's the school holidays! Yay!

Glad to hear that madwoman!!

It was a great programme and I think will raise understanding and awareness of CP in a really positive way for anyone who watched it.

Thats lovely madwoman, hope you have a good journey and the weather keeps warm here - 21C on wednesday forecast. yipee.

Soon.to.come.out.ofhibernation What did oscar wilde say about losing one parent physio being unfortunate, but 2 looks like carelessness!

DGS back to his normal self. Just wondered if anyone knew anything about protecting the PEG site? Its lumpy and could catch on clothes or be grabbed and pulled by someone picking him up. Some kind of padded vest??!! Might have to get inventing again. Think he's put on a pound. will weigh him every week now!

Have just got anat baniels book kids beyond limits and I so love her philosophy re children with sn.

Skinuk used to have pics uploaded of different ways folk had adapted vests etc... Might be worth a look?

Am def looking forward to spring in the uk!

Are you on FB sneezecakesmum? The 'Hope for HIE' page has quite a few parents whose kids have a PEG and I'm sure will have some advice..

sneezecake - I know, extremely careless I get the feeling this year will be eventful one way or another! Glad to hear sneezecake jnr has put on a pound or thereabouts Sorry I don't know much about pegs - apart from the type you hang clothes on the washing line with! Hope someone else comes along with some good info for you.

surviving - shame I missed that programme. Will try and catch it on iplayer.

dd woke up 3 x last night so I think I'd better go to bed now to try and catch whatever z's I can!

Thanks for the info re SKIUK and hope for HIE will look into both. Actually I am registered with SK and have got myself thingyd with paypal, but have still to figure out how to verify myself and post

Our physio is so brilliant. was round today and working with the young'un, he was so shattered he fell aseep while we were all chatting...so cute!

Survivingspring - thank you so much for that tip about the "I won't drop the baby" prog. I finally got round to watching it just now (on the sky box) and it has lifted my spirits no end. To see the confidence of that couple, their independence and the "normalness" of the family etc was fantastic. All I want for my ds really......