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.

Yes yes yes to research research research :)

Oh and hippotherapy!

Research Karen pape. She says when nt children develop they learn to do skills better with age. Just as cp children learn to do what they do badly better. Children with spasticity, because their brains have learned to walk with a typical gait, will continue to walk in this way and they will get 'better' at walking badly. This walking badly prevents them from learning to walk with a better gait.

Even the muscle tightening typical of spasticity increases because the brain learns better how to tighten these muscles. The muscles themselves are not abnormal so in theory there is no reason for them to get tight, its just the brain giving the wrong messages and because it gets used to working this way continues not just to do it but get better at it!

It's not easy to stop all this, far from it, but understanding better what happens helps with therapies and may explain why some are better than others.

Hi!!

Can I join in? I'm a bit of a MN lurker but I have a 6yo DS with spastic Diplegic CP. He is having SDR on 7/10 at Bristol. Very nervous but can't wait to see the results!

We also have a 2.5 yo dd and I have found this summer very difficult to manage them both whilst out and about :(

Hi Fizzy knickers, I would be feeling the same nervous but very excited to! good luck! How have you found Bristol as there seems to be very mixed options of them on here?

I have a DS2 whos a 1yr with quad CP and a DS 3yr and I have it differcult to go out with them both on my own as they both want to do different things generally avoid it unless I have family with me to help who are normally brilliant with them!

Best of luck with the SDR, there is a few on here who have had SDR and I personally find this thread a great place to get a bit of a release! been amazing help for me so far and continues to do so! :)

Hi Bishboschone!
Long time, no see . DD2 had a Kaye Walker, but her walking has come along exponentially that we only had it for a couple of months. She's not perfect at walking, and only in short bursts, but she just refused the walker and seems to be pressing on independently. So the physio agreed we could send it back and re-order it at a later date if required.

DD2 walking seems to have really taken off since we started Bowen therapy. It's complimentary therapy and we go to a private clinic. Worth checking out if you have someone in your area- I just googled it after a recommendation on here.

DD2 has a diagnosis now. She has asymmetric bilateral spastic cerebral palsy. You'll recall that I suspect CP from about a year old when she wasn't sitting independently (that seems like such a long time ago). She still has increased tightness in her right arm and leg although she is affected on both sides. We're encouraging use of her right hand/arm and this seems to be working, but the physio is watching for growth spurts when there may be difficulties with muscle lengthening having difficulties keeping up with bone growth.

We're immersed in the Statutory Assessment process at the moment and find out by 9 Oct whether we'll get a Statement for DD2 (highly likely according to child psychologist). And I have the forms to apply for DLA but have not yet had enough wine courage to tackle those yet.

I recall your boy was at much the same stage as DD2 about a year ago. How's he getting on with his Kaye Walker?

Relative newbie here (perhaps 6months in to this thread?) with DD2 who is 2YO.

I've caught up with the thread and wanted to assure the 'old timers' that this newbie was interested in their SDR talk, even though it isn't quite relevant to us yet. This forum has provided me with a wealth of excellent information and support. I appreciate we're all at different stages on this journey, but that's why this thread is so great; it has helped prepare me for what the future might hold.

But I also understand if you'd like your own thread too (I'd just lurk there now I have found out what SDR is!). Thanks for considering the newbies , and although I can't speak for all of us, I'm not distracted by the SDR info

Hi everyday , he walks brilliantly with his walker but won't walk / can't without it.. He is 2 .3 now but really 2 . We have had genetic testing and still none the wiser . He presents similarly to cp which is why I came over here. But the paed says no to MRI as it's genetic . Hhmmm... Great that your dd is walking independently though, I'm hopeful ds will one day !!

Ps .. Everyday... We did the dla form online one evening and honestly it's no where near as bad as it's made out to be ( for me anyway) .. It's very repetitive and a bit daft at times but overall pretty easy and we were awarded middle rate .

Re DLA. Think about all the things you do for your child that a non-disabled peer would not need e.g. Physio every day, help toileting, up at night (spasms, toilet etc.), help getting in and out of car/wheelchair, falls, orthoses, stretches etc. as a general rule middle rate care is if your child needs more than 1 hour extra support a day, high rate is if the child needs support during the night. For the mobility component you need to describe in detail your child's walking ability. The mobility one is easier to complete.

hi there, I'm new to this page. my ds is 18 months old and diagnosed with spastic quariplegic cp. I live in leeds and want to meet other mums with a child with cp, anywhere in west Yorkshire. hope its ok to post it here, thanks

Hi everyone,
Not posted in a bit but everything has gone mad busy. Jack has now re started physio after summer holidays and so far has met all his targets, his portage starts in a weeks time and he has been referred for orthopaedic shoes. We are also waiting on a standing frame and special push chair, everything suddenly seems to be happening! He's reaching and grabbing better and although he's not talking he's making lots of noise lol when he was diagnosed I was devastated and thought that was it but I've already seen the progress my little man has made. I just wanna say that everyone on here has been so supportive and even though its hard work its so rewarding when your little one manages to achieve something new and makes everything your fighting for so worthwhile.

SAlbook1 I have a DS2 who is 12months with quad CP also I wish I lived near you as would love to meet someone in the same situation, im in Wiltshire. bit far for a coffee :)

Vampcladi I just read your post and think I have been living in your life lol our standing frame has just been delivered and got our app for shoes to use this frame, although I am haven a fight with wheelchair services as they say they cant accommodate DS2 as hes not 3 yet and they don't have anything that he will fit in.

can anyone recommend a good car that you will get a childs wheelchair/pushchair in the boot as I have been looking currently have a corsa and it just wont work with a chair been and looked at the otto block chair has anyone got any experience with this?

Thanks in advance

cheers bish and inhibernation

salbrook1 sorry, I'm not in your area either. Below is the link for the CP charity, Scope. I've done a search all Scope befriending groups for West Yorkshire, but give them a call if you don't see what you're after on the list. hope this helps.

www.scope.org.uk/nearestyou/localgroups/West%20Yorkshire/-/all

Hi choggers ,
I've just been give a Renault Megan as a curtesy car and that seems to have a really big boot, I wouldn't recommend a new Clio as that's got a funny shaped boot that's awkward to get a pram in. Hope this helps a little x

Does anyone know is persistent whingeing a side affect of having cerebral palsy or am I just unlucky enough to have a really whingey child? My daughter, two years old and a twin but her twin is not affected. She has mild cp spastic diplegia just affecting her lower legs and is still not walking. Attends weekly physio and has been fitted for piedro boots. She is on the milder end of the scale and outcomes should be good for her. She is such a whingey child though. I estimate around 80% of her day is spent whingeing. When she is like this we would lift her and try to comfort her but she would push you away. She doesn't seem to like other children and days out to activities and soft play always end in tears. Her twin is the opposite, outgoing, running around and in to everthing. It breaks my heart to see her just sitting there and me thinking I wish you were more like your twin. I done everything by the book, why are you like this? I don't know if it is frustration with her but sometimes she makes things so difficult. We are doing everything in our power to help her walk and despite months of physio I feel that we are still a long way off.

Hi
I'm a lurker that decided to join in!
My DD is 22 months (18 corrected) and has diplegia. She is now walking with a Kaye walker and we are having a wheelchair made to give her more independence.
She's a very bright little button with amazing speech (uses sentences already) and an adorable personality.
Question time!
She's recently started being on her toes almost permanently and never has her feet flat. She has higher boots now but I think she's on her toes even with the boots on. Is this likely to be permanent?
I believe Botox could help but is there a minimum age they do it?
I'm not given much info by anyone and I would live a better understanding of the type of issues the future may hold if anyone could give me an insight.
Thanks x

pumpkin. Do you do stretches? I think you need to let the physio know this is happening. AFOs can help with toe walking. Do you have Piedro boots? Night time splints are also useful. Using a standing frame for upright activities can be helpful for keeping the weight through the leg joints and the weight can help pull the heel tendons down flat. If all this failed they would consider botox but not sure of the age as we are not in botox territory ourselves!

Albaba. Some children are just whingy but with CP there is a lot of frustration involved. Check if you can that she is not in pain or uncomfortable somewhere. Is she worse at certain times? Is she overtired? Look at all the physical things first and rule them out. We get whinging if things are not going to DGSs personal liking but we have lots of strategies to stop the whinging. Unfortunately the more strategies to divert and entertain you have in place the more it 'rewards' the whinging, but this is true of any child! The only thing I can suggest is to find things DD likes and distract her. Anything is better than nonstop whinging

Pumpkinpie - she could be growing? My DD always gets stiffer during growth spurts. Is common in children with CP particularly and as sneezecakesmum says stretches should be suggested by physio.

Albaba- I have to be honest, DD has never been a whinger although she's becoming rather a feisty 6 yr old I'm rather dreading the teenage years as she is so completely stubborn and singleminded! It could be frustration with your DD but she sounds close to walking which is great

Thanks for your replies.
I think my LO has just grown a bit.

We don't do stretches. In fact last time the physio came I changed the time on my living room clock to see if having the therapist longer would mean we got more quality with extra time but it didn't! She kind of actually does nothing except say how well my LO is doing.
She wears Piedro boots, we were meant to get splints a couple of months ago but the orthotist decided against it. I think the decision was based on her schedule though rather than DD's need as the two appointments after us were already waiting so there wouldn't have been time for the casting.
We have physio this week so I will really have to put my foot down I think and insist something is done.

Another question maybe somebody can answer for me is about when the children start school.
Do they normally need extra help because of their mobility or are they left to become independent?
My LO wouldn't be able to cope in a nursery without help so I have requested statutory assessment but I was hoping by 4 she'll be moving without help!
Thanks x

Hi Pumpkin - if your DD is independently mobile by school age then she may not need a statement but an IEP should be done at the very least to make sure all her needs are addressed at school.

DD has an IEP and we've been able to access specialist equipment including a supportive chair and a laptop. Apart from extra support with PE she doesn't have much other help in school which is great as she hates anyone thinking she's different! She wouldn't use the special scissors they got her and would much prefer to make life harder for herself with the ordinary ones

There is a good demonstration of all the stretches needed for cp children in this book here Your physio should demonstrate how to do them but maybe shove the book under her nose and ask which ones are appropriate to your DD. the stiffness with growth spurts occur because the bones grow but the ligaments and muscles don't keep up, that's why stretches, AFOs etc are so vital.

Thanks everyone. I'll have a shop around later for the book (I hate Amazon!) and I will challenge our physio on things this week, I'm feeling more confident about fighting my corner following your replies.

I took my DD to a shopping mall today to practice with her walker. We didn't get much walking done though because everyone wanted to stop us and say how culture she is! One guy even said it was the 'best baby walker he'd seen' and asked where I got it. Poor guy looked really embarrassed when I said it was free on the NHS because she has CP.
I've never seen another child with a walker. Do other parents use them in public or is SD not as common as I thought?

I take my ds everywhere with mine.. Shopping included. I'm determined he will walk and the way I see it practice makes perfect.. He gets soo much attention because he has little glasses and is very cute . He also loves music so will often stop at hops at dance to their music. I only go first thing when it's quiet though as he is a little willful and will go where he wants to
Go
Sometimes! I'm in the south if you fancied a walker meet up :-)

Hi Pumpkin, my DS has had a walker since he was 18months old. He is now 6 and a half.

He is having SDR on TUESDAY!!! :O

Good luck then Fizzy! Where are you having the SDR done?
So your DS has not moved away from his walker since he was 18 months? I assumed it was just a temporary step but never thought to ask!
A walker meet up would be great. I'm south West so if anyone ever fancies a rather slow walk around Bristol or Swindon I'm getting the hang of my directional kick to the front wheels for turning corners!!