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

DGS had hydro for 3 lovely years, 1 hour weekly and it was brilliant for him. It was via our hospital physio department. They also ran the sessions so I would start there. They have now stopped for us and are only doing blocks of 6 weeks then you are supposed to find a pool and do it yourself Think its cuts more than anything but they said they have too many referrals. tbh a good many children there did not need it as they had such minor disabilities, not even noticeable in 2 cases, and DGS is affected in all 4 limbs and really benefited. Should have kicked up a fuss but its always awkward. He started at 7 months.

There are never enough hours in the day and juggling appointments and work is a nightmare. I am going to buy a lycra vest from USA (SPIO) as our physio is not keen on them at the moment, but I would rather fork out the money and see if there is any improvement. It certainly doesnt act like a corset, more a sensory reminder of where his body is.

Hi Everyone,
Just wondered if you had heard about Conductive Education for children with Cerebral Palsy................. I myself work in this field and am a strong advocate for this way of working..

We got dd's diagnosis in a rather twisted way. Even though dd was getting behind with her milestones at about eight months adjusted, her hospital consultant and comm paed still found her muscle tone to be normal until she was just under one year old adjusted. At this point, her consultant found she had high muscle tone, mainly in her legs but also her arms to some extent. We were under the impression that a bit of physio will sort it out. The first physio appointment followed shortly after and within ten minutes or so, the therapist (who has been absolutely wonderful and me and dd adore her) told me that she has spastic diplegia.
Back home, I googled spastic diplegia and high muscle tone and was struck by the fact that all the hits that came up had something to do with cerebral palsy. it annoyed me a bit, because of course my dd didn't have something as heartbreakingly awful as cp (because none of the medical people we were involved with had mentioned this), so why couldn't I find a reference to spastic diplegia and high muscle tone that was relevant for us?
The next physio session revealed all. To start with, I asked roughly how much physio dd might need until she has caught up with her peers, and the rug was pulled from under my feet when she gently explained that dd will never "recover" from this and will have issues for ever, at least to some degree. I then asked about spastic diplegia and the fact it always shows up in connection with cp when googling it, and I finally got a detailed account of what probably happened to have caused all this, how it has affected dd and what it might mean for her future.
For several weeks after that, all I could ever think when looking at my gorgeous, cute-as-a-button little angel, was: Your brain is broken. You are so perfect on the outside, and so adorable and lovely from within, and your brain is broken.
I'm getting all tearful remembering what that felt like. It was hideous, and I felt like such an awful mother not being able to see past this ...imperfection.
But after a while and constantly reminding myself of the fact that she was still exactly the same little person she was before the dx and the one I was so in love with from the word go, I started to see her again for who she was, rather than just for a very very much loved, but broken child. And we started to come to terms with things.

Thereonthestair I know what you mean about not seeing that anything will happen anytime soon. But you never know. Things happened very suddenly and quickly with dd at one stage. We went on holiday when she was 1yr10 months. When we first got there, she could stand while holding on to something. a couple of days in, she was letting go of the table while using both hands for playing. A few days later, she stood up unaided - on gravel out of all the possible surfaces she could choose from! - for the first time. About a week later, back home, she took her first steps! Mind you, it took her several months from that point before she started using the walking in a functional way, she kept holding our hand for a long time, apart from when she walked from one person to another and she only had a yard or two of ground to cover.

So, progress can always happen, even if it doesn't look like it's nearby.

Anyway, sorry for such an epic post. I feel good for writing it down though, I hope you don't mind. x

Jokat what a lovely post. Thank you...

When DS has had phases of progressing it has always been in bursts so I do know what you mean. It's just been a while since the last burst. Physio this am was very positive, and said given the extent of the CP DS is very determined and clearly wanst to get to walking so he will. Maybe that's all I need a but of a kick up the bum every now and again. DS also told my DH that he had to run with DS holding his hands walking at the weeked, so he does seem to be seeing the point.

My next question for those more knowledgeable is how to incentivise DS to use his wlaker. He needs a lot of persuasion, he'd rather hold hands!

Jokat. That was a lovely post and sums up what every parent (and grandparent - me!) goes through. It is incredibly difficult but gets easier with time. Never goes away though

Thereonthestair. We get DGS into his walker and encourage him to go into the kitchen and drag everything out of the drawers! He hates his walker to for what its worth, and will only tolerate it for very short periods. Its a rifton 2nd size, and funnily enough he loved his old one (first size) I bought on ebay, but this nice shiny new one he cant stand! Would love some tips too

My ds doesn't seem to hate the walker, just doesn't see the point of it. He'd rather crawl. The physios say he needs it to be independent btu he can dow hatever he wants if he crawls, whereas with the walker he's more limited. Mind you I have just lost the plot with one physio who set generic goals for DS which inclduded spending time outside with the family doing other activities such as cycling. uh he can't walk and you've told me he may never cycle so how is that a sensible goal. It's like me having a goal of winning the lottery. Not going to happen especially as I don't buy any tickets.

I think it is brilliant your DS is crawling. Just wish DGS would have the coordination for this. No stiffness just like Pinocchio with the strings cut! Crawling does so many things motor development wise, and exploring his environment is beneficial for his social/cognitive development so I cant see their gripe! I am sure walking holding hands is just as good provided the stepping gait is correct.

Have you considered a trike? DGS has one and loves it. He can also peddle it amazingly well! Its got all the supports on it for correct movements and positioning. Maybe not this time of year but in the Spring. If you go down this route the OTs can assess and make recommendations and you can get charity funding for trikes. Takes a good few months, but something to think about

Jokat - loved your post - totally empathised with the bit about looking at your dd differently. Just such a shock to be told the issues may never resolve So pleased your dd is doing well

Totally agree about the crawling. Once dd had mastered that it made a huge difference to her coordination as it patterns walking. We've always found the progress goes in bursts - dd almost gets worse with everything before something amazing happens and she makes another milestone!

Long time..........

Hope everyone is ok. Welcome to newbies

Busy here. dd had her second assessment for SDR in Bristol and we await the decision. Also trying to sort out school and a statement as she starts school next year. Have been told statement is unlikely which I'm not about to roll over and accept easily so looks like yet another battle is about to commence. dd is still mostly a happy, active girl though very stroppy sometimes - esp toward her poor big brother. She's 3 going on 13!!

thereonastair - it sounds promising for ds. Maybe the botox will help him start to walk now that his feet are flat and muscles less stiff. Re trike - dd has one and we used to take her out in it before she started walking even. My husband fixed some converse type boots to the pedals so she could get the feeling of pedalling with us using the parent held handle. Now she can do it on her own :) But she wouldn't be able to do it without the boots as her feet would just slip off.

We need a SN buggy for dd as she has outgrown hers. Have just been referred to wcs

Our friends little boy has just had his SDR in this country, not sure which one No news as yet but his parents have raised 20K for physio with 20K still to go . Apparently he needs 2 years intensive physio! He did have very stiff legs despite botox and baclofen, so I'm sure it is the best thing for him.

Sorry ladies, what does SDR stand for?

Selective dorsal rhizotomy

Dd2 only ever gained a new milestone once I had given up on her ever doing it. Minx.

Tis freezy here. Brrrrr.

We have three broken brains here. Dd2 with the birth injury, dh with traumatic brain injury after a work accident, and ds1 because he was cooked in cortisol courtesy of dh's accident.

In hibernation, which trike do you have? Dd2's kitten had foot straps, and you could also get it with fitted AFOs...

There - we had the yes/ no thing with dd2's walker. Ended up getting it back again after a year without. sometimes taking a 'backwards' step is just a way of kick starting development again.

It's snowing.

Jokat feel free to ask any question about SDR and what it involves. Unfortunately there is a lot of misinformation about it even from doctors.

Madwoman - didn't realise about ds and dh. Gosh you are the odd one out in your family! How are your ds and DH affected?
Dd has an ordinary plastic trike. I quite like her to pedal without her splints so she can get proprioceptive feedback. Next step might be a girls bike with stabilisers. A used one perhaps at first. Don't want to spend lots of money on an adapted trike if we can do without.

A mum of a child with CP has just had a book published called Dana's walk" see Amazon. Iit's a good book for anyone considering SDR but also just generally if your child has CP.

Lol, it's me and dd1 - I've got an ally!

Dh was in a bit of a state after the accident, but is pretty much back to normal now - he wasn't expected to survive, and I was 10weeks into cooking ds1, we were o'seas with no family support, etc etc. he gets the irritability and tiredness, but is mostly fine. Ds1 has ADHD and aspie traits, anxieties and phobias. All of our specialists agree ds1 is way more stress than dd2!

hello. I'm currently on a name change for various reasons but have been here before in a different guise. For those considering SDR I hear tell from a paed friend (not connected to my son's care in anyway) that one of the Bristol team has just gone to GOSH and they are looking at setting up a team there. Not sure how reliable it is but friend does work at GOSH so must be fairly accurate.

Peas your friend is right. Kristian Aquilina has gone to GOS and hopes to start a spasticity service there offering SDR amongst other things. Great news for London.

DGS has no spasticity anywhere but is like pinnochio with the strings cut . So SDR and botox def. out.

We are waiting at the moment for a SPIO vest to arrive from USA so will let people here know how we get on with it. Basically a lycra vest, but not of the corset variety. More to give proprioceptive input.

Snowing omg.

We are waiting on Lycra socks for dd - again for proprioceptive feedback

She had a corset thing provided but it didn't fit so it went back.

Madwoman - glad you've got an ally!

so glad my friend is right. Bristol and Oswestry a loooong way from here.

Hello everyone. Have been getting on ok for the mo. DS making progress but his physio being encouraging with a veiw that those who walk a little later with DS pattern of tightness (hamstrings mainly) actually walk better. So despite the fact he still seems to be doing nothing, it should all stand us in good stead. Fo rus though Botox has been a revalation. Ds is so much free -er now and no sign of effects wearing off yet. Also not revealed any other weaknesses we didn't expect. Also he's now back to akay walker which he uses but hangs off. Physios disagree about forward versus rear facing walker. DS disagrees with it all and repeatedly says no wlaker - bike, or no walker - up (meaning on my shoulders)

Ds due to get a vest/bodysuit thing as current theory is that it's his core which is main issue not CP as such. It was delayed though so god alone knows when that will come. Also going to start potty training soon so short/vest body suit may be an interesting combination.

Inhibernation when do you think you'll get the decision on SDR. I am coming round to the idea we need to think about it for DS. Would be great if it was London though. Bristol would be a real pain, but I guess nearer than St Louis.

Madwoman - I await the day when i get the swing of CP. But what alot to deal with. You always seem so calm.

There - glad botox has helped ds
Feel free to pm me or post on the thread if you have any questions re SDR. If you wish to consider it I'd recommend asking for a referral as its taken us over a year to get to this point. We hope to hear within the next fortnight.

Bristol is not near us either but am just glad it's being done in the UK as it wasn't when we first started researching it

inhibernation I'd be grateful for some details on SDR. Even though dd's spastic diplegia is quite mild and there's currently no reason to look at surgery, it can't be ruled out all together for the future. I just have no idea what kinds of surgery there are! So what's selective dorsal rhizotomy all about?

Jokat, there are plenty of mild SD children who have had SDR. The problem is that although the brain damage is static, the effects on the body are not. Spasticity causes much damage to the body, often necessitating a series of orthopaedic surgeries. And loss of function occurs as well so that children who have been walking in early childhood have to rely increasingly on sticks, wheelchair etc. SDR involves selecting and severing affected nerve rootless in the spinal column - the ones that cause lower limb spasticity. Once the spasticity is gone/dramatically reduced, the individual will initially be weak as spasticity provides false strength. Intensive physio is then required for approx 1 year post surgery to build strength and teach better walking. But there is an excellent safety record for SDR and despite a lot of scepticism in orthopaedic surgeons and some physios etc. the improvement after SDR is immense. If you have a look at YouTube you'll see lots of pre and post videos - I felt choked when I first started viewing them. Also on Facebook there's 2 groups - one for SDR St Louis Children's Hospital and the other is SDR UK. In this country it's available in Bristol, Leeds and Alderhey. There's a different SDR performed in Oswestry. Hairy's son had it done there. It's not neurosurgery - its performed by an orthopaedic surgeon. You need to look at the differences in the procedures. We've chosen the neurosurgery version. I've been in touch with parents whose children have had it both online and in RL. All say it's the best thing they could have done. There is no denying though that the physio programme is gruelling. It takes a massive commitment but IMO you tend to have that if you have a child with SN anyway. The other thing to say is that not all PCTs will fund it though this will improve I feel. Families have to fundraise for the surgery and/or rehab programme. Our main reason for wanting dd to have SDR is that her function is maintained. It would be great if there are further gains but the most important thing is that she is able to continue to ambulate independently. We also want to reduce the need for her to have orthopaedic surgery and there is evidence that SDR achieves this if performed early enough

Correction: both versions of SDR are neurosurgery but the one at Oswestry is performed by an Orthopaedic surgeon