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

sneezecake - it's social services based provision whereby you make an application (probably via a healthcare worker). It could be for therapy or respite or anything in between. Your application is then assessed and a budget set. Usually you would need to make a contribution but I think this is means tested.

cheers inhibernation, we probably wouldn't be ab;e to get it if it's means tested.
It's really crap we are not high earners, but just above the thresh hold so we get nothing, except DLA!

I know exactly what you mean. In a similar situation but I think it's still worth looking into. Nothing ventured nothing gained.

Evening all,

Brainwave: We went to the one nr Bristol. The first time you go its a 2 day assessment with your child and usually 2 or even 3 physios and? or OT depending on the needs of your child. Day 1 is the assessment and day 2 they show you the program in the morning, while making a DVD then you do the program in the afternoon. Each program should take a max of 1hr a day you aim to do it 4-5 times a week. Its basically physio exercises, you have the DVD to look at and instruction sheets in case you forgot what to do. After that you get assessed every 4-6 months. Its just a one day assessment from them on, any progress gets charted and the program get adapted. I find it really useful - no need for private physio, travelling to appointments etc. Just 30 mins in the morning and 30 mins in the pm most days. Personally I get on with Conductive education and brainwave better than bobath.
direct payments : you need to ask your disability social worker to do a section 23. Sounds scarey but it just looks at how much therapy you do with your child, how much time you have, how much stress the family is under etc. We are just finishing the process and looks like we will be awarded 4 hours a week :) They could take your child out, watch them while you do housework or play with a sibling. Help you take them swimming whatever you choose, you write the job advert etc yourself. There are other options but its easier if you talk to a specialist. It is not means tested as far as I know.

Another essay from me then ...

so the paed did the neuromotor clinic referral for dd2, but i've just had an e-mail from the physio telling me all the info they need to accompany it. it will take forever:
'

• Specifically identified problem or issue

• Correct demographics

• Birth records

• Proof that a discussion about the diagnosis of CP or CP-like condition has occurred with family

• Results of any developmental screens

• Results of any allied health profession team members (SLP, PT, OT, Psych, Social Work, dietician)reports or assessments

• Results of any diagnostic imaging or other related tests

• Surgical history

• History of botox injections

• Medications

• Language spoken at home, including whether parents are English-speaking

• Any current or past equipment, splints or bracing

• Health care coverage.'

the child is 8yo and has been having all sorts of therapy, interventions, and equipment her whole life. and two mris!!!! crappety crap. as if i haven't got enough to do, i've got to regurgitate her entire file. ffs. do you think an abridged version would do?

Found this thread, which is fab as i am looking for support from other Mummies in similar situations...it is very easy to think that you are alone in raising a child with cerebral palsy, which is exactly my thoughts at this moment in time!
My daughter, who is an identical twin (her twin hasnt any disabilities) has Spastic Diplegia Cerebral Palsy and although this is very mild and luckily only affects her legs (I know it could be so much more worse, so i do count my lucky stars), i still cant help but think why?! why her? what went wrong? what caused it? She was diagnosed at 15 months and before this her lack of gross motor skills was put down to 'developmental delay', as she and her twin were born prematurley at 32 weeks. . .her twin however was very advanced for a premature baby and although we shouldnt compare them, i always had a feeling early on that something wasnt quite right.
My daughter and her twin have just turned 2 and at 2 she is still unable to walk, however does now cruise around the furniture and will walk holding hands (although on tiptoes). . .she is the happiest little girl and so determined to do everything her twin is doing, which is why i think she has developed so fast with the help of physiothereapy. . .so for her its great having a twin. . .for me on the other hand, I find it hard looking at her twin and seeing what she would be like if she wasnt affected by CP (am i wrong in thinking like this?) Is there anyone out there in a similar situation? Having multiples, where only one is affected by a disability? Would love to hear from you. . .

Apologies for posting in the wrong area. Wishing you all the best :)

Hi xtwinmummyx - glad you found us! Sounds like your DT is doing very well and will hopefully be walking before too long. The walking holding hands bit seemed to go on forever with my DD but must be so helpful for your little girl to have her twin to copy and spur her on.
I know what you mean about thinking 'what if'. I used to have a picture in my head of my DD without any difficulties and feel really down but that picture is slowly fading away as she gets older and she just is the way she is these days!

inhibernation - thanks for the info on direct payments - interesting I didn't know about that. I am expecting we could lose our DLA soon which will be a dire blow for us so we are saving it up madly to live on if worst comes to the worst...

Hi survivingwinter nice to hear from you :) How olds your DD? Is she now walking independently then and how old was she when she was? What form of CP does she have? Sorry for all the questions, I know all children are different, but its nice to hear other peoples stories :)
I really do hope this feeling fades soon, i feel awful having these thoughts as I do feel totally blessed to have twins and my little girl is amazing...in a sense, it makes the little things she does on a day to day basis that little bit more special and makes Mummy that little bit more proud!, so for that reason i wouldnt change a thing and certainly wouldnt change her for the world!...I just worry about what the future holds for her and how being an identical twin will affect her... At the moment its a definate plus being a twin and has helped so much with her determination and confindence to try new things and move forward with her physical development, but i am afraid as she gets older she will start to think 'why me?' Its just horrid the not knowing!...not knowing what the future holds.

xtwinmummyx - DD is 4.5 yrs now and doing well given her brain injury and very rough start to life. She walked at 20 months and these days has difficulty with balance and fine motor coordination. We escaped official CP dx at 2 yrs as it was still a 'wait and see' but DD is probably mild athetoid CP as she has some fluctuating muscle tone and a weak trunk which is quite characteristic.

We have some friends with twins (non identical) and one has CP. I know it has been difficult but they are so close and really help each other. There are quite a few parents with twins in a similar situation on the FB group I belong to - Hope for HIE. Might be worth a look!

xt - welcome . My dd sounds very similar to your dd. Also 2, with diplegia. Has started to take independent steps recently. Developmentally, she sounds similar to your dd. It must be very difficult for you at times because of your twin dc who is unaffected but I'm sure you are right that this is a positive influence on your dd and helps spur her on. Where in the UK are you based?

Hello everyone. I just wanted to pass on a comment I just had from one of Ds's physios who was of the view that while walking independently is the goal, that sometimes it is better for that to be a bit more delayed in the long term, s if for example our children spend a lot of time cruising and going sidewides they are strengthening the muscles tone on the outside of their legs which will compensate for the tightness on the inside (that's my DS pattern which I understand is quite normal for a prem) so that in the longer temr the gait will be better.

Can I just ask has anyone also got a child who has both CP and hypermobility? I am told this may be a good thing for ds but am not sure as the hypermobility is more of a balance issue than the cp i think, but it also means he doesn't toe walk

thereonthestair - yes DD has both and we were told in the early stages of her walking that the hypermobility was 'helping' as she doesn't toe walk due to the lax joints. As you say though, it affects balance which as DD has it in her hips, knees etc means it is an issue. Now DD is older, we are working on the hypermobility more and it is still hard to tell how much the CP is affected by the hypermobility and vice versa

That is a very interesting comment from the physio about the delay in walking potentially being a good thing!

Re the delay in walking we have been told to get DD crawling again as once she started walking the stiffness in her shoulders massively increased again. So in our case I agree with your physio thereonthestair it would have been much better for DD had she walked later.

I imagine the advice will differ depending on what type of CP and how severe the involvement is. As the child starts to walk, the physio should simultaneously be focusing on gait as well as function. dd's walking has improved at the same time as her balance - fortunately! Though she does have some tightness in her shoulders. PT thinks this will improve as her core strength improves (which it continues to do).

survivingwinter thanx for the reply, sounds like your little ones doing brill :) Does she attend a pre-school or school?...and if so, how does she get on? My little girl goes to nursery one day a week and has just moved up to the next age range room where shes the only crawler...although she enjoys it lots and as far as im aware mixes well with the other children, i do worry as she is the only one crawling how the other children will look at her.
Thankyou for the facebook page suggestion, will take a look :)

inhibernation yes i agree our little ones sound very similar in their development, ive seen a few of your older posts and thought the same :) Hows your little girl getting on with taking her first independent steps?...i bet its very strange for the both of you? Does she use a walker?...my little girl is due to get a walker soon, so hopefully that will help get her more sturdy on her feet and give her that little bit more confidence.
We are based in Devon :)

thereonthestair thankyou for passing on the comments from your little ones physio, it makes me a little more reasured that my girls physio is on the right tracks also... The physiotherapist my little girl has is brill and has always said that it was better to get her crawling the best way she can before getting her up on her feet... From only being able to commando crawl at 11 months old, she then learnt to get up on her hands and knees but would only rock forwards and back (but atleast she was up on her hands and knees!), then would crawl but shuffle both knees forward together, and now she crawls on her hands and knees really well alternating both hands and knees...all due to her physio giving us the same advise! Her physio also suggested early on to get her pulling herself upto kneeling against things so she was strengthening her upper body and back, which she learnt to do at 15 months... She was also very reluctant to have her on her feet too soon...although she was doing this within a month of learning to kneel (but i think this was down to having a twin who was up and about walking at 15 months!) As we couldnt stop her from pulling herself up onto her feet, once she knew she could...her physios emphasis then was to get her standing in the correct manner (for example with her legs apart and feet flat) and for us to help install these correct messages in her brain.
inhibernation i again agree that our children are very similar in the way their development is going and also the way in which their physios work with them...my little girls physio always focuses simultaneously on gait and the way she stands correctly, as well as function and getting her to walk :)

once again i typed a reply but the computer lost it. damn

Xtwin my DS goes to nursery and both the nursery who I rate very highly, but also the physio want him to stay in the group with his peers even though he is the only non-walker amongst them. it was more of an issue a few months ago to be honest. Now I am sure its the right thing to do. the other children all seem to get that DS is a bit different but its not a problem at all, and in fact the children are super inclusive and will always come up to DS and say "share" and also join where he is playing. They just accept him for what he is and given I expect him to stay with this age group as he goes through to school that works for me. I also have some friends with triplets one of whom has CP, one has other issues, and one is completely NT, I know their mum very well and she says that the fact they are triplets with different issues is a definite plus. The triplets are quite abit older now and to date there is no sense of why me.

surviving great to hear that about your dd's physio agrees re the hypermobility. I think it probably is also a plus, but it seems so weird. Mind you DH is apparently extremely hypermobile and although my mum says he's clumsy I never knew until DS consutlant said he was far to bendy. DH has some great party tricks!

thereonthestair ive done that twice now...it gets you to sign back in and then your message has gone, so i learnt after my 3rd attempt and copied it before i sent it!
Its great that your little one is doing so great in nursery...my little girl has been attending nursery since i went back to work part time when the twins were 10 months old, so before she was diagnosed with CP...she absolutely loves it and as i work at the nursery of course i would rate it very high and its nice its my friends who look after her. I guess its just a 'mummy' thing to worry anyway, but i do seem to worry more over the twin with CP than the one who isnt affected...even though she oozes confidence herself and certainly doesnt let anything get in her way!... I wouldnt want to hold her back from her peers either, as cognitively shes at the same rate as them and it is just her physical development that sets her aside from them and im sure it wont and doesnt phase her...its us mummys that worry too much about things isnt it!
Thankyou for the info about her friends with triplets, its nice to know there are other people in similar situations...and very nice to know neither of them have the sense of 'why me', as thats one thing i do worry about as she gets older and starts realising shes 'different' in some ways :)

I am seriously thinking of changing dd's NHS PT. I don't want dd to start to get negative vibes - especially when she seems to be making such good progress. I just don't get why comes across as so negative when everyone else is so positive.

xt - it's great that your dd is so bubbly and positive. That will stand her in such good stead

I will be requesting a different physio when I see paed in Feb, I don't get why DD isn't being given adequate support to maximise her potential for 'typical' movement. I'm in a ranty mood about the reason we ended up in this situation and the true impacts of the NHS cuts......

Well I'm not alone in wanting a rant.....that's good

Grrrrrr............why do the job if you aren't prepared to work in a positive, constructive way with the family. It's not as if we're that difficult. Yes, I can be assertive.......but frankly I think some parents may have lamped her by now.