Support/information sharing thread for parents of children with Cerebral Palsy - Part 2

[Galena]

Can I start the new thread by saying, welcome to any parents of children with CP - any age, type, etc.

Looking back at the last thread, we have discussed treatment options, chatted about other peoples' perceptions, celebrated milestones, given support, and generally been lovely!

Come along in!

DD is 3.9 with Spastic Diplegia. Independent walker and attitude the size of a planet! We are considering SDR for her in the next year.

goo??!! good. again

Oh, and she's 'running' round the living room in her new kaye walker from the physio . Night everyone!

Hi all,
Nice to see some new people
Very busy right now as we've started fundraising for dd's SDR aftercare. Also we've switched from Bristol to Gosh! I've been finding it a struggle to keep chasing relevant services, health professionals etc. at the same time as working but it has to be done! Hope everyone is ok :)

Hi all. In hibernation thanks for pm, will reply soon. Glad to see some new faces. Ds now 3 driving me mad, but not driving me as mad as he is driving dh. I hibernation interesting re gosh. Have you got a neurologist as well as Kristian at gosh? If so which one.

We are still neutral/ unsure about sdr. Just heard a complete horror story of a little girl whose cp is very similar to ds (hamstrings mainly ex 28/29 weaker grade II similar with kaye walker to ds - in fact could be ds apart from age and sex). etc who is so much weaker now and parents kicking themselves. But still trying to find out more to decide. Also now thinking about schools but getting nowhere fast as parent partnership never able to call apart from when we are at another appointment. We will get there soon enough.

Does anyone (apart from sneeze cake) have a child with cp, who is not the youngest? I would love another child, but dh not so much even if life came with a guarantee another child would be fine, which of course it wouldn't. I am not getting any younger (40 is fast catching up on me) and I just don't know how if at all to sort this dilemma. I suspect the answer will be no as dh is so anti but I fear something will always be missing.

Separeately I just want to add that we got a trike (well 2 in the end- long story) and the Tom cat trike is by far the best thing we have ever bought for him ( much better than the kitten he tried and imp we got second hand). Anyone who has children who can move at all over 2 ish I would really recommend looking into trikes for the summer as it makes such a difference to ds who can go out independently, and steer and has such fun. And the physios love it ! Also lots of charities will fund but they take a bit of time so if you are thinking about it, it is something I would heartily recommend.

Hi All,
Would second any recommendation for a trike- well worth the money as generally the life span of the first/second size tomcat trike is for 4-8 year olds.
Anyone looking for a blue one 4-8 years I know of one that is being sold and its in excellent condition.

Also look into starting swimming with your children really positive and beneficial too.

My dd is not the youngest in the family - she was my first and we took the risk having a second child....a few scares during pregnancy and thought we were going to have another 31 weeker but held on until 38 weeks. Do listen to the doctors though as I was supposed to be on bed rest, no lifting etc but what do you do when your child can't sit up properly, stand to go to bed- and you are the only adult around as the other half needs to work as you haven't.....that's why number 2 was nearly a 31 weeker and why baby did arrive at 38 weeks cos I was naughty!

Anyone at pre school age please make sure you apply for a Statement of Special Educational Needs now, don't leave it up to pre school or think that school will do it, it is so much easier if you do it now( please believe me as I speak through experience- not well meaning health professionals who sometimes are not aware of how the educational system works)

My child hasn't had sdr but has had major orthopaedic surgery at a hospital that performs sdr and we saw children who had received the surgery and wow- I wish that we had known about this at an age that we could have had the option for dd.

Well hope that's not too long, hi to Galena and Hairy too x

Everyday..thanks re bowen, I will look into it as nothing ventured etc! DGS currently having cranio saccral therapy to see if it halps with his anxiety. Very new age but the therapist said she felt a lot of tension around his ears (he has hypersensitive hearing and rubbish balance!) and she nearly made him drift off to sleep even though it was still morning, so we're giving it a go.

Giddypants who is my DD and DGSs mum has just had a new baby (9 weeks old) so DGS is the first. Frankly she was petrified of another placental abruption, not prem birth, but it was very carefully managed and a successful c section. Little jabba the Hut porkie fully bf baby is such a sweetie and we can already see big differences in development compared to DGS. They take really good care the minute you say 'I have a disabled child!'

Definitely get a trike. we tried DGS on the Imp and it was fab for seating but the pedals were too wide for his pelvis so he was pedalling outwards, not good! Thats why its always best to get OT involved and trial. DGS has at last started RDA and I would recommend a handling belt for a dyskinetic child with poor balance Also off this week to Brainwave so better make sure we've done all our homework

We have our next OT session next month, so I'll definitely ask about trike recommendations, thanks all.

Chatee DD2 is turning 2 next weekend, are we too early to start the statement for SEN? Do we apply direct to the LA?

Our new paed (now transferred from hospital paed to community care) promised in March referral to portage and a co-orinator for all our services (early years, perhaps?). Nothing has materialised so I'm going to call her this week and hasten.

Oops name changed. We never got portage, because ds in nursery. We are in early years. At the moment they are number 1 on the what the actual fuck do they do. So far nothing apart from question ds entitlement despite the fact ds paed who is their overall boss put him on it. That made her very unhappy.

We may yet send ds to a local private primary and if so not really sure what happens with statementing. He'd still need his one to one and on the current system he'd get it. But of course all change for the year we need it and so far getting no answers from anyone

Everyday- do it now! Like tomorrow as if you apply before a child is 2 years old there is no decision about whether to assess the SEN COP says that children under 2 years must be assessed.
Go to the IPSEA website where they have draft letters for you to amend to your child's details.
Send to the head of children's services at your LEA.
You won't need realms of info in the letter just a few basics as to how and why you think your child will have more needs than the average child - focus on health and safety too( as that makes them worry a little more) remember pre school is all about free child led play - how will your child cope with that? Can they access the dressing up clothes independently? Hold a paint brush and stand at the easel? Walk/ sit up without assistance? Express their own needs vocally and independently? Eat safely? Contact Paed and tell them you want a report for your application for a Statement of Special Educational needs but do not delay applying as part of the process involves getting all the reports together.
Good luck x

Just checking in and reading everyones news! DD is doing brilliantly with her Kaye walker. She is keener on walking holding my hands but her stamina and posture is a million times better in the Kaye so trying to encourage her to use it lots more; come on sunshine! We recently had a gait assessment and physio wants to try AFOs as next step so waiting to be measured. Interesting about SDR and hamstrings; that is where the bulk of DD's spasticity lies too. Stupid question-do most of you find out about things like SDR, other therapies etc from paeds or own research?

Our physio wants us to have a CAF/TAC/whatever it is called meeting soon with all the professionals involved before she leaves us in August and we start to look at preschool as she isn't wildly impressed that no one is working together. I wish the rest of them were as good as her; I think it might be a waste of time!

Hope everyone else is doing well x

Amymouse,
Please apply for a Statement of special educational needs yourself now- Dont wait until all professionals can get together...
See my messages above
Good luck x

Ps it's so good to hear how well all the younger children with cp are coming along- really brings back memories and reminds me of how far my dd has come on. Especially at the moment as she is a typical teen with horrible hormones and. Super stroppiness. I am quite fortunate that I know two lovely young ladies with cp ( in their early 20's ) and an older teen who have all taken dd under their wings and treat her as the annoying little sister and put her in her place. I can also see and talk to their parents and know their is light at the end of the tunnel x

Hi everyone. Busy day today. Called pead and stated my disappointment that I had not received our initial consultation report nor heard from any agencies we were supposed to get referrals for. How long does all this usually take? Our consultation was 12 weeks ago! aaargh . Anyway, apparently report drafted awaiting doc signature and will be dispatched in the next 2 days. Also they've referred us for portage and Birth to 5. Horrah, something is happening.

Then called our preferred school as all the templates for applying to LEA mention the school. Our preferred school v helpful (SENCO) and said they would be more than happy for me to name them on the form and were v constructive.

Statement application is going to be posted tomorrow, now I have some more info under my belt.

Chatee

Amymouse our OT, physio, EEG, MRI, portage and Birth to 5 have all been on referral by the paed. (The hospital paed being FAR quicker/more efficient than the community one we now have ).

Everything else has been chatting on here, Scope and general internet research. I got Bowen recommendation from this thread and backed it up with some internet research - my physio and OT hadn't heard of it. I suggested to our physio that we'd benefit from a kaye walker after hearing about it on here. I've asked for a SaLT referral (through physio). It seems we have to do much of it off our own backs.

My mantra is every kid deserves a pushy parent .

everyday - you are so right! Though it is kinda draining.

Chatee - statements are being phased out and in the borough I reside in it is now almost unheard of for children to get one unless they have more than one profound need. Physical disability alone is not enough! So though I have applied for SA it is likely that dd will be on Action Plus which equates to 15 hours 1:1.

Thereonthestair - so glad ds likes his trike. Dd loves her bike too. It's so good for their muscles, and it's fun :)
Re SDR - the physio period is lengthy as some children are weak for a long while after. Dd's physio said she's worked with some children who take up to 1 year to get back to where they were. dd is milder than them so we hope it will be sooner that she's regained her strength but prepared to do up to 2 years post-op physio. The spasticity is like a shell encasing the child's muscles so there are some muscles that have never been utilised pre-SDR. dd is weaker on the side of her body that has higher tone so we know she will have to work harder on that side. Though it is also reassuring because it shows she is capable of building strength as she has been able to do so on her less affected side. In the physio assessment underlying muscle strength will be measured.

Request for assessment from LEA posted today traceable/signature special delivery, so it'll be there by 1pm tomorrow. Scope online had a very good template to use as well.

I luffs this thread...

Lots of endless research articles etc etc. especially if your LO (like DGS) is uncommon and only about 16% Cp is like him. Maybe even fewer as he doesnt fit any typical picture so half of the research is just finding a proper description so we can look at related therapies! Just about to wade through 'oral pharmacotherapy for movement disorders of cerebral palsy'.

Hi all, just had our second pt session today, physio says there is tone in ds right arm and leg, think its called right hemiplaega, hope I got that right! She has suggested ortho boots for when he starts walking and maybe a splint. Said we could also think about Botox injections if needed in the future. They mentioned something about him having an MRI scan? She said they don't need it to make a diagnosis as the symptoms are obvious, so I'm unsure as to any benefits of having a scan?

Everydayaschoolday, how s your daughter now? Does she have mild cp. our paed and physio think my sons is mild and I hoping his symptoms will be minimal. This s a new thing for us and its taking a while to sink in, we have all sorts of things running through our heads at the minute. I'm already worrying how he will manage at school, will other people notice, how will he manage? Really is a rollercoaster of emotions at the minute.

Hanc - a lot of children with hemiplegia do walk.
dd has Diplegia and wears splints on both feet. She tolerates them really well. Honestly we are so lucky that despite her feistiness she tolerates day and night splints and physio! I think it helps that she's had them from a young age (before 2 yrs of age).
One fact that kept me going in the early days was that children with CP are no less happy than their peers without CP. This was researched. It helped me to know that there wasn't a thing I could do to cure the CP but at least she wouldn't necessarily be sad as well!!

Hanc i think the vast majoirty of hemiplegic children walk, and in very general terms if it is just hemiplegia it is more likely to be classified as mild, although there are often more issues with writing, dressing etc. I know a few hemi children, far more than I do diplegic children like DS. One I would not notice he had CP at all, he walks, runs, plays sport and the only time there seems to be anything noticeable is when he plays the piano, which he does badly. I first met him when he was 7.

The other child is more severely affected and yea I did notice when i first met him (when he was four) he had one splint, but walked and ran badly. he used a maclaren major for ling distances, but he was toilet trained, dressed and undressed and at a mainstream school. His main issue was sight and dribbling. It just goes to show that when you have met a child with cp you have met a child with cp. They are not all the same.

DS also is fine with splints. he doesn't like them but he tolerates them and always has. He also never complains about pain even though he does sometimes say they hurt. he is just very sociable.

You may wish to look at hemihelp. I hear they are very good. Shame I can't say the same for scope.

On another point anyone heard of/tried PERCS. I understand it is a US technique now being trialled in the UK?

HiHanc DD2 is doing really well. She sat at around 16 months. She's progressing now exponentially (she'll be 2 on saturday). She can cruise along the furniture (side stepping or walking holding on). She is doing some self feeding but getting cutlery at the right angle is proving difficult. She is using her right hand now, but it's still quite stiff and she needs reminding to use it - it's harder work for her than her left. She has no speech (yet) I'm still holding out for my 'mummy'. She can point, nod, shake her head, giggle, laugh, drop things to get a reaction (!), crawl (only very recently), so we're getting there.

As inhibernation said, she is so, so happy. She'll have a great quality of life because I can see her personality growing and she's a fighter . And funny with it

She also has piedro boots on referral from the physio. They are v cute and come in a selection of designs and colours - so don't be dismayed if you get a referral, most people don't even recognise that they are any different from a sturdy pair of clarks.

All the mums at the school gate for DD1 (turning 5) all know about DD2 diagnosis. I'm open about it and have such lovely support and understanding. I'm confident that all the kids at primary (ages off yet but you do think about it!) will be kind and help her. Secondary school might be different, but not thinking of that one yet.

It took me a while lurking on here (about a year) before I posted. It takes time to let everything sink in. Give yourself that time. They change so much in the early years, and kids have a habit of surprising us or proving doctors wrong .

Everydayaschoolday thank you so much for your words of encouragement. I'm just letting it all sink in at the minute. Having physio every two weeks and had a liaison nurse come round to talk with us which was very helpful. I'm starting to get my head around things a bit more now, and its encouraging to hear so many promising posts on here. At the min he is still commando crawling. He gets up an all fours but just rocks and gives up. Not pulling himself up yet but has started trying on the bottom stair. He can stand holding onto things like the bed or the settee but ain't started cruising yet, but to be fair he's not 1 for another 3 weeks so I'm very pleased with that. He does seem to be trying to use his right hand more, just seems awkward and stiff and has very poor grip but hopefully with physio this will improve??

DS having botox on his adductors this afternoon. I am sitting at work trying (and failing) to concentrate on drafting a claim for a client. Nothing really to say. I know it will be fine although I understand that it is more painful than hamstring and soleus which we did before. I think I am just feeling sorry for myself. Spoken to a colleague who says that he knows its different but everyone feels the same about their kids and worries the same even if the issues are different.

Not sure if I buy it. Not everyone takes their children into hospital regularly for therapy and treatment. Not everyone looks at all the other children running into nursery and climbing up and down stairs etc. Not everyone has to worry about whether their child will ever get to take their own shoes off (although DS can now take his splints off at the most inappropriate times). Nothing really to say, just having one of those days somehow and figured you lot would understand.

On phone so keeping it short. Was thinking of you today, thereonthestair. Was at work so couldn't message back. Hope all went well this afternoon, and your DS is feeling alright. Big hugs your way. And no it's not quite the same as I didn't worry about dd1 the same way as I worry after dd2. You're right xx take care xx