Mums to kids with Cerebral Palsy?

[Sneaks]

Hi just wondered is anyone in the same boat ? and would like to chat?

hi there I'm one will I do?
dd is 11 and has afetoid cp. she goes to a sn school. just moved up to secondry.
How about yours?

hiya,
i have a 6yr old dd who is in year 2 at a m/s primary school with cp spastic diplegia......

My daughter is 2years old and has Spastic Diplegia. She attends a (pretty crap) early intervention programme with enable ireland.

Hi, I have a 8 year old DS with spastic diplegia CP and a 6 year old DD1 also with spastic diplegia CP. They are both in MS school, DS doesn;t need any support, but we are in the middle of the statementing process for dd1

Wow SG..can i ask do you know was there any reason that both your children ended up with SD?

I'm amazed to finally find some moms with kids who have cp to be honest!
With regards the fact that all your kids are older and have SD - are they walking .. and if so how hard was it to get them going? My daughter is 2.5years old and at present still crawling (properly) and pulling herself up to stand with the help of furniture and also some very slight cruising across furniture..and i mean jerky small movements to get where she wants to go.

How much physio do your kids get?
My little one only gets it maybe once a month which i think is shocking!

I love my wee one so much .. my first .. im a single mom .. ive never known any different with regards babies.. i knew she had it (thankyou google :D ) before they diagnosed it at 18mths. she has moderate sd cp. i think myself it happened due to the umbilical cord being wrapped around her neck during delivery.they never noticed, and i was pushing and she was being strangled. she came out black basically. . and not breathing. she was resus and after what seemed like forever was brought around and whisked to the special care unit but was apparently ok to breath on her own and everything. Her problems only became apparent at about 4mths when she wasnt hitting milestones.

Its hard ... the strain is hard.. but to be honest the worst is the hearthbrak of wishing she could get up and run around at 2.5 and play with the other little ones..
She is the loveliest happiest little girl though, always laughing and giggling and up to mischief . she loves to sing and just started to talk. . so im delighted.

2shoes
What is afetoid cp?
And hi girly

Sorry if im talking too much!

Hello sneaks im mum to a DD with left side hemiplegia,and she also has ASD, she is 2.5.

DS's CP happened in pregnancy, sometime between 28-34 weeks, he stopped growing but the blood flow was ok, so we didn't know that anything had happened. At 7 months I realised that something was amiss and was back and fro to GPs, and specialists, noone knew what was wrong. At 18 months old me and DS went to stay with my aunt for a week (DS had just started walking). Her dd1 has SD CP, and she spoke to me saying that she felt it was CP. Anyway, we continued to go to the GP and health visitor, and eventally we were referred to a back specialist, as someone thought he had a curved spine, when we got there the specialist said that he didn;t have a curved spine and referred us to a pead. who didn;t know so referred us to GOSH. Within a hour of walking into GOSH they said that they felt that DS had brain damage. A MRI and blood test followed and we were told about 2 months later that he had SD CP. He was 2 1/2 years old by then.
With DD1 she was 9 weeks premature and suffered a lot of problems while in SCBU and she was diagnosed at 13 months after the HV picked up that she was very floppy, wasn't transferring objects etcetc. She has mild CP, but behaviour, learning and vision problems too.
DS is now 8 (nearly 9) and he walked at 18 months, DD1 is now 6 and walked at 26 months. They both wear splints and DS wears gaiters at night.
Sorry have rambled a bit

are they walking .. and if so how hard was it to get them going?

yes-dd can take steps around the classroom unaided(so leaves her k walker just outside the door-there is a specially marked parking bay for them-h+s for all)and can take about 20 steps on a flat surface as long as there are not alot of people around..
yes it was hard work getting her going but we are reaping the benefits now

How much physio do your kids get?
when we moved here(dd age 21 months and no official diagnosis)we received fortnightly physio at the local hospital but it was a nightmare, dd would scream as soon as she entered the room so nothing was really progressing until physio decided to do home visit and saw a different side to dd- a nice little girl that really wanted to try and do things-so home visits continued on a weekly basis
for about 18 months and then when dd started playgroup they went back to fortnightly(physio was busy but also dd was really tired!!).For the last two years(year r and year 1 the visits continued to be fortnightly at school with one visit during the summer holidays)but now dd is year 2 the physio is only visiting once a month(not sure if i like this idea but dd certainly does)
At home we did play based physio with dd(before she started at school)but find it very difficult to do any now that she is at school but we do take her to swimming lessons twice a week(mainstream lessons)and i collect her from school one afternoon for a couple of hours and she goes to the local riding for the disabled for a 45 minute horse ride.When she goes back to school her teachers have commented that she is so relaxed and they quite often get the best piece of work for the week in that 30 minutes back at school.

My dd also wears a lycra suit(can't remember the official term and afos and specially adapted footwear

Hope you don't mind me saying but start thinking now about when your dd will start playgroup/ school and what extra help or support she will need so that you can start the process sooner rather than later and so your dd has everything in place that she is entitled too(and that you are too- a short break at pre-school is a wonderful thing for you to be able to relax/do things that you find difficult to do when your dd is around- and of course it means you are more focussed to carry out the extra tasks your dd will need when you are both refreshed

i so hope i haven't upset or offended you with the above paragraph but i found out more information from mumsnet than any other place

Good luck and take care xxxxxxx

ds, nearly 6 yrs - left hemiplegic cp.

I was just wondering..to all you mums of kids with CP.
Do you think that my DD is getting enough physio..as I am worried that she is not.
She has moderate spastic diplegia, not able to stand by herself , gets around by crawling. She can pull herself to stand at furniture but she uses her arms mostly to pull herself up.
I queried the amount of physio with the centre she visits and was told that she is "doing most of what she needs herself and is taking things at her own pace"
She is only seeing the physio for an hour (not even) every month.
Other than that at the moment there is a playgroup for her every friday morning where there are two physios (who dont really do any "physio" with them) and about 6 kids.

I'm quite worried as personally i think that she should be up and walking by now as she is quite determined and independent. The physio has never given me a programme of excercise for her, anything ive done with her has been through my own common sense for building up her leg muscle or research through the internet and sites like this.
I was diagnosed myself with a lifelong illness not so long ago and it means that i cant work with her as much as i should be able to. I explained this to the physio and got told the same as before "that she is doing what she needs to be doing on her own , and look, she is able to pull herself up to stand now"
I feel very frustrated and depressed over everything at the moment.

sorry been away with the fairys
afetoid is wher you get extra movements.
Don't know where you live but when dd was that age I think she only got about an hour a month. but we had exercises to do as well.When she was about 2 1/2 we satrted do conductive education which was a nightmare but REALLY helped. Have you considered that?

I thought it was athetoid? As in 'athetosis'? DS used to be described as having this kind of cp.. have I been prounoucing/spelling it wrong??

DS is six.. no proper diagnosis but currently described as having a 'dystonic type of cerebral palsy' with develomental delay and a whole host of other things wrong with him. But lots 'right' with him too.. although he is a little git!!

Well we get nilch physio for dd nothing, she has left hand hemiplegia and we are on the waiting list, we had a 4 month waiting list for her feet to be measured for piedro,s and she has gone up and size and not been able to wear her boots for over a month, we bought her some trainers but she has been falling all over the place, its terrible in my HA.

r spelling used to describe extra movement in which case you are most likely right I am a crap speller

you are right my spelling wrong

Athetoid cerebral palsy - control of muscles is disrupted by spontaneous and unwanted movements. Control of posture is also disrupted.

my niece has cp she is 5mts old she also has a termanal heart cond i am going to show my sister this thread so she can talk to you

hi
i am mum to dd1 who is 8, she has right-side hemiplegia cerebral palsy.
she hardly gets any physio at all, anything she's ever been given is because i've pushed for it. all her progress has been due to her own efforts! she's never had more than an hour a month, now it's even less. we've got exercises to do at home but that's not the same imo. she has a dafo splint at the moment, she's been refused botox for her hand/leg. a few years ago she used to have piedro boots.

My dd has SD CP and at age 2.7 has only just started crawling. We are appalled at the lack of physio she gets - about once a month if we are lucky BUT we have lots of exercises to do at home and frequently get updates from the physio on new things to try. Her philosophy is that a burst of physio for half an hour or an hour etc isn't what dd needs - she must constantly be positioned and moved in appropriate ways so that is why it is all down to me to pick up these techniques and ideas and do it myself. I think it sounds like a bit of a cop-out but then i can see the sense in it deep down. There is no point having half an hour with a physio and then leaving her to her own devices the rest of the day. If you can't get anymore contact time then maybe you can at least get a plan drawn up for stuff to fo at home and then agree to review that every so often depending on how your little one progresses.

But frankly, i think it is a real eye-opener to see how little help there is available.

Also, i echo the MNer who suggested that you start thinking about preschools etc. We have just started trying to sort out and have again been stunned by how little help and support there is for getting dd into somewhere appropraite. We got there in the end, but it took countless meetings, phone calls and rows. it shoudln't be like this, but it is.

Flocci,
are you all sorted for your dd to go to pre-school....do you have extra support in place???

don't be fobbed off as statements of special educational needs are available to children in their pre-school year(and possibly before-my dd was!!and she has sd cp)as this is a legal document the support can not be removed without a fight....

good luck and hope your dd enjoys herself

Hi my son has possible cp, nothing official as of yet. We are just going throgh the process of statementing. He was 2 in october but in terms of development its easier to say what he cant do. He is unable to control his head properly and cant sit up/ crawl or roll. He has definately come along in his own little ways though. He has very poor vision and an ng tube for feeding.
He was born at 36 weeks as he wasnt growing well. The labour and everything went well and although he was small he was ok. 2 weeks later he got hyperthermia and went to scbu.
He is hopefully going to sn nursery/school in January.
Just got a blue badge too which makes things miles easier. Now we just have to find disabled spaces!!!!

Forgot to say he gets physio fortnightly and hydro weekly as well as what we do at home. He goes to nursery and they are fantastic and do all his physio etc too. They all know how to do the ng feeding which is brilliant.

Hi to all of you who dont think your getting enough physio! I have to say most parents of kids with cp say this or at least feel it at some point. But Flocci has hit the nail on the head when she says that a lot of it is about knowing your own child and where they are with their development. If you want a programme of exs or stretches for your child and havent been given one, then do ask your physio. But remember that a lot of the everyday stuff and general stimulation is really important too. Its easy to get bogged down with a child walking, and then realise that they have no fine motor skills or social ability.

With the best will in the world, resources in the nhs are crap at the moment, but we have always said theat the best person to work with a child is their own family, as they know the child better than anyone else. three times a week in the physio gym would be a wwaste of time if the child just cries all the time.

Im going to stick my neck out a bit know, but if your child hates having physio, then maybe the physio isnt right for that child. Or it maybe a way of getting sympathy from Mum - "if i yell, mum will cuddle me and this nasty lady will stop making me do things that are difficult!" Parents have got to be involved, otherwise it all gets like the bit on Supernanny where Jo frost leaves the family alone and it all fallls apart, only to miraculously get better when she returns.

This may sound a bit garbled, but its late and its been a long day. Best wishes to you all