Please or to access all these features

SN children

Here are some suggested organisations that offer expert advice on special needs.

support/information sharing thread for parents of children with Cerebral Palsy

999 replies

inhibernation · 03/11/2011 12:59

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 Smile

OP posts:
Everyonehasaprice · 04/09/2012 12:43

isw thanks that's really helpful and it appears you have been told some of what we had, but with more detail. If you could link or pm me the research papers that would be wonderful.

I agree about doing botox first and seeing what the response is and I think that is at least part of the reason we are probably going to go ahead as we probably only really need hamstrings, as they are the muscles preventing DS last few degrees of movement.

inhibernation · 05/09/2012 00:27

Isw - your understanding of SDR is the same as mine. However I spoke to a parent who's child is quad CP and she said she thinks in some instances perhaps Dr Park might cut more nerves depending on the child but that he has a 100% safety record with no sustained complications.
He has a 20 year unblemished reputation.

The idea that spasticity is useful to a child is becoming less commonly shared. It is not true strength, it is masked weakness. I have seen my daughter get tighter and have more falls. In stretching her we are always fighting against the tone. She cannot put one foot flat. She walks on tip toes. If she doesn't have SDR she will be in a wheelchair in a few years and will not learn to run. You are right, it isn't a decision to take lightly. It requires a lot of commitment before, during and after surgery. But we've researched SDR thoroughly for 18 months now and we are 100% sure that we are on the right path.

How is everyone else doing? Master sneezecake, madwoman's dd, thereonthestair's son..........and everyone else.

Loving the Paralympics Smile

OP posts:
survivingsummer · 05/09/2012 13:51

Interesting question on funding of SDR in Prime Ministers questions this morning. David Cameron going to personally 'look into it' with regards to NICE recommendations apparently.

Also loving the Paralympics - am starting to get very excited thinking about what dd could achieve looking at the CP athletes!!

madwomanintheattic · 05/09/2012 14:26

Sooooooo, who knew yesterday was CP day?....

It doesn't seem to have been very well publicized!

wentshopping · 05/09/2012 18:05

We've been back at school since last Monday, and dd already been sick and back at school again. Why would someone send a kid to school with a tummy bug? Obviously not someone who has to clean the runny poop off a wheelchair. And the paralympics are not on the tv here in the US. There, that's better, rant over.
DD had botox a few years ago, and had terrible reaction to it - so dr advised not to do it again. (I've posted about this before, so apologies if you've heard me drone on about it). Don't think we are candidates for sdr either, as even if her hamstrings were loose, she still couldn't sit or stand on her own.
Just embarking on application for new power chair - a sit to stand one. Crazy $$ though.
Reminds self to watch youtube for yesterday's boccia action.

chatee · 13/09/2012 21:04

Hi Hairy,
have just caught up with your blog and it is really handy to ' know ' a little about what lies ahead when having surgery at rjah(i know the surgery is slightly different) but the ethos about going back in for intense physio the same and i would love to think there may be a 'peer group' for dd too somewhere.
This time in 2 weeks it will have been done - dh and I are still in the burying the head in the sand mode but i am liasing with dmil this weekend to see when she can have the little brother(who is desperate to be allowed to still go to school!)
Thanks for keeping the blog updated as I have said before it is a good resource.

thereonthestair · 14/09/2012 18:08

Hello everyone.

So it looks like many more people are either going down or looking at the sdr route. Interesting.

We are all fine. It appears DS is making very slow progress. Still can't walk. Took 2 steps independently in early August but nothing since. Now got a standing frame and we are thinking about swtiching the kaye walker for a rollator. He uses the kaye walker in nursery but never ar home. Maybe its behavioural.

His physio has retired so we have a new one. The one who said he has CP then promptly left the session. To be fair I liked her more this time. Maybe she is a better therapist than she is in clinic. Also she's American so is ok with the question if this was your child and money was no object what would you do.

We may try 5 days per week physio for a fortnight soon to see whether it helps.

Not sure what I thought of the paralympics. To be honest glad to go back to normal.

And as for sending children to school with tummy bugs, I am afarid that I think the answer is because nobody thinks... well apart from themselves

HairyMaclary · 14/09/2012 18:58

Hi all,

Sorry, not been around much, too much physio!

To clear up a few points. The Oswestry version of SDR is the older one, it is more invasive, leaves a bigger scar and does not go down so far, this means it is at less risk of causing bladder, bowel and sexual function problems. However even Mr. Roberts, the surgeon, thinks this is a theoretical risk but it's one he doesn't want to take. This means that the Oswestry version of SDR leaves residual spasticity in the calves. As a result of this it is a more conservative procedure, not only does it not include so many vertibrae, mr Roberts only cuts between 30 and 40 percent of the nerves.

The USA / Bristol SDR is the same operation, the Bristol dr trained with the American dr. This is a more radical op, as usually at least 50 percent of the nerves are cut and more of the nerves are chosen, ie the ones from the lower regions are included as well. This is where the possibility of bladder/ bowel issues comes from but as I said earlier it's unlikely anyway to cause a problem. The op is done in a different way, more like keyhole surgery, so the scar is smaller and the time spent lying flat on your back less post op. I think it's 48 hours compared to 5 days in Oswesrty.

The biggest difference though is in the selection procedure for the op. Oswestry will only take those who they know will show a significant, measurable, benefit, usually a move from GMFCS 3 to 2 or from 2 to 1. This is partly due to the funding issues of the NhS and partly due to Mr Roberts belief that post op is too much work for those who will only see a minor improvement as they are already too able or those who are too severe will not be able to do enough effective physio.

Dr Park and Dr aquilina have much broader criteria as for them the removal of spasticity may allow walking, even if not independent, which brings a great improvement in the outcome of the child receiving the op.

Here I feel I need to say, we chose the Oswestry version for a number of reasons but nearly went to America. I have previously been attacked (subtly but obviously) for our choices but in my eyes we are all doing the best for our children and I have no critisim about any of the surgeons, they are all offering a freedom to our children they would not otherwise have. Mr. Roberts does not deserve the vitriol I see in some parts of the SDR community but neither does Mr park deserve the label that he's only in it for the cash that I also see.

Having got that out of the way! I would encourage anyone interested to look at all options. It certainly has been life changing for DS and all of us, but it is very, very hard work for him and the whole family and that is not to be underestimated.

Will now look at the rest of the thread, once both DSes are in bed, I think this post inquire long enough!

inhibernation · 15/09/2012 22:11

Madwoman - yes I knew about CP day. I rang Scope to ask if they had any merchandise I could buy to promote it. They didn't know about it.

Thereonthestair - good to see you back. If ds has taken some steps I'm sure more will come. Are you thinking of a physio centre? Have heard intensive physio can be very helpful.

Went shopping - hope dd better now.

Hairy - its terrible that you have felt judged by others re your decision to opt for Oswestry. You're right - we do what is best for our children. That won't always be the same thing. Glad to hear ds continues to make good progress.

OP posts:
wentshopping · 16/09/2012 18:30

hello all. DD now on third bout of diarrhoea, now with vomiting. Each time gets completely better and goes back to school. Luckily the couch took a hit this morning instead of wheelchair. Grin
All she wants to eat is mcdonalds - wondering if I am feeding her too healthily the rest of the time. Just posted the same question on g-tube thread - but have any of you had diarrhoea issues with pediasure? I'm wondering if that is upsetting her stomach after the initial tummy bug.

sneezecakesmum · 17/09/2012 19:11

I've answered on the other thread for what its worth!!! I read here too all the time but we're not in the market for SDR. Which is a great relief Grin

We do need to discuss with the neuro about whether botox will help DGS with standing and his fluctuating tone. No spasticity when relaxed but like an ironing board on effort. bloody confusing all this stuff. a mixed picture child is unusual and a very small percentage of CPs so even our physio is a bit Confused by DGS and whats best re baclofen/botox.

madwomanintheattic · 17/09/2012 19:30

Sneeze - they do sometimes prescribe different meds for intention tightening, I think? Might be worth discussing, even if to rule out, whilst pondering the Botox? Can't remember what it is, but deffo not the same as for straightforward spasticity... We didn't ever follow it up, so I'm not sure if I've even got a record of it... It was yonks ago though, so I suppose might have been withdrawn or fallen out of favour...

I'm with you on the mixed picture. Grin frustrating!

Lol, went, I love that she craves mcd's to recuperate. Grin

inhibernation - scope didn't know either? I don't feel too stupid, now, then. I suppose I ought to join the local CP society and try to stay in the loop!

All well here. Dd2 is 9 on Friday! 9! The whole lap top thing isn't quite working out at school - it seems to be too much of a faff. I am pondering whether we should suck it up and buy her an iPad for her birthday, and get it set up with immediately accessible stuff so that she can type at school without having to open programmed, wait for loading, and generally always be five steps behind everyone else. Someone else's TA has taken to writing in her agenda for her (I'm guessing no one could read her own notes) so there must be some sort of academic planner app that I could download?

Any ideas? The iPad just seems easier.

wentshopping · 17/09/2012 21:11

Hello mad - on the agenda at school - my dd uses her eye gaze device to control a laptop for all her written work. For the agenda, she or someone else just takes a photo of the whiteboard where the homework is written, and it is stored on a memory stick which she brings home. The communication device is pretty big and bulky, but I love the memory stick going back and forth with all the work on it. (the laptop is a school provided macbook)

Saw GI doctor this afternoon - she suspects giardia even though test back clear. Oh well. We're going to give her some medication to kill the giardia which has the side effect of... an upset stomach :(

sneezecakesmum · 18/09/2012 20:53

madwoman. Thanks for the info. DGS has an appt thursday (?what) with someone or other. Ill go along and see if they think this is an option. Probably a SLT appt though !! The intentional tightening is a killer though, the harder he tries to reach for something the further away his body pulls him!! He is getting an idea about voluntarily relaxing but he was only 4 this month so its a lot to ask.

Re the ipad. DGS uses mine all the time for toddler apps and games. You can get specialist protective sleeves which protect against dropping as ipads only break if they fall on the corners apparently. They are amazingly fast to respond though. Grin There are specialist for SN pads for communication alone but we have no experience of them. Inclusive Technology do lots of stuff like this. The only problem with the ipad is it doesnt do flash player so a lot of stuff is not accessible (cant do cbeebies for instance) and you are stuck with apple stuff. Then again they do an awful lot of stuff which we have no experience of yet!

wentshopping. at least they have got to the bottom (no pun intended) of the diarrhoea problem and it is treatable. I can see a very long haul though if the treatment also causes upset bowels. It'll take ages for all the inflammation to settle.

madwomanintheattic · 18/09/2012 21:35

Went, I like the idea of the laptop and stick, but it didn't seem to work in reality. I think because it was taking so long to boot up laptop/ get organized - and she was unable to use the stick herself with any great speed... The grade 1 teacher originally suggested MacBook though, because of the easier cable connections and stuff (the pc she uses means it's hard for her to get the stick in/ plug in etc, so it's more of a time issue. I get the impression that she would find an apple product faster and more user-friendly, and would probably be able to use it herself. They tried a buddy system so that she had a friend to help her with the plugging in and whatnot for the pc... But I'm getting the impression it's too intrusive)

Ugh on meds. Fingers crossed they work fast x

4! He's so big! Doesn't time fly! The inclusive technology stuff looks good, but I'm guessing it wouldn't keep up with school stuff? Will have a look round. It uses flash though! Grin

wentshopping · 19/09/2012 02:26

Mad - dd's aide plugs the stick into the macbook - dd would not be able to manage to do anything as fiddly as that. Then she can switch everything else on with her eyes, so just works away by herself. We actually went to school to get some catch up work today on the stick, and she's just finishing off now. Unfortunately someone had scanned a worksheet sideways so we couldn't write on it Grin
So far so good on poo today - keeping everything crossed for a calm stomach.

sneezecakesmum · 19/09/2012 21:12

Mad..its really difficult with communication aids. DGS has been given one of these a super talker from salt which you record onto and put symbols/pictures into. He likes it but DD and I are Confused with its best use. I put in numbers 1-8 and he pressed them in sequence first go but after that we are scratching our heads....its not like he can trot off and bring it to us and touch the drink icon!! We will persevere as salt will be checking up on us. We made all the pages up the day before his first (post aid) appointment and luckily he showed her he knew how it worked!! Phew we managed to blag that one Grin

Fingers x that tummy stays calm went!

wentshopping · 20/09/2012 06:32

Sneeze - dd had a variety of these "low tech" devices before her first big communication device age 3. We had one which was just four recordable buttons, and I used to sit her in front of Dora the Explorer, record the three places Dora had to go to before the end of the episode and leave her to press the button when Dora asked on the tv. (Got the idea from older sister shrieking the answers at the tv). Next was a 20 button talker like yours, and I recorded a random selection of things so we could play a modified version of I spy in the car - So one button would say "I spy with my little eye, something that is" then she would press "green" or "big" etc, with also a button for "yes, you're right" and "no, try again". Now we have a free app on an ipad for very basic communication - she doesn't use this very much though as the eye gaze device is very effective for her - it is big, however and needs to be positioned on a table in front of her. We also have a tango, which has a selection of jokes on it, which she likes to tell to random strangers. I also used to make the 20-button device into a mealtime selector so that it would be in front of her at mealtime, and she could ask for more, or a drink, or tell me something was delicious Grin

wentshopping · 20/09/2012 06:36

The ipad app is Tobii Sono Flex lite, by the way. The lite version only gives you a certain number of goes at speaking, then you have to reinstall it.

sneezecakesmum · 20/09/2012 19:37

wents. Will try the Tobii sono flex free version as he loves his/my ipad! Its really difficult to use those talker devices isnt it?? Its the ideas that are tricky, but your ispy game sounds good. Not in the car as he cant hold a device, but putting pictures on the pad of objects and then asking in to press the button when we hold the appropriate object up. Increase the complexity once he gets the idea! Thats a really useful suggestion thanks! Not sure about dora as he's not into her, but we are incorporating books he loves and waiting for a response from him. He's a bit bull in a china shop at the moment and just enjoys pressing everything.

Its so difficult with him to do cognitive stuff as the physical is so important. Had a hip xray today which was OK but he has tightness in his legs, but not because of intrinsic SD but lack of normal movement stretching the muscles. So lots more of the hated standing frame and the hated AFOs and the hated walker! The only thing appropriate he loves is the trike and its too cold now Angry Still we have the power plate as suggested on these hallowed threads Grin

Oh and choosing food is a non started. He has virtually no interest in food whatsoever, end of!

madwomanintheattic · 20/09/2012 19:48

Aw, sneeze, get him in a warm pair of trackies and layer up and get him out on the trike. We used to have a Thomas the tank engine play table, and I would get dd in the standing frame, and dump a load of stuff on it, and put the tv on as well. Best chance for distracting her for twenty minutes. If I was feeling v yummy, I'd wang a shallow tray of gloop or lentils or something, and do some sensory stuff... But I usually left that to nursery as she was sooooooo weird about the sensations and phobic. Grin

Well, we went for the iPad...

sneezecakesmum · 21/09/2012 12:07

Yea on the ipad. You can use it when shes in bed Grin

DD got DGS in his new AFOs and did sit/squat/stand exercises with him and we are going to do the standing frame daily and a bit of walking too every day. Hope we can still use the trike with lots of clothes layered on and some warm gloves...of course its chucking it down today!

He hates the standing frame despite the stuff you advise but will tolerate it with the ipad but we like to use that on the floor getting him to prop on his weak arm and 'tummy time with reach' which is really getting good!

Really going to push the standing and the AFOs now to loosen up those tight muscles. Much less of an evil than botox. Not against it on principle but its not nice having it done. More bloody sedation Sad

wentshopping · 21/09/2012 15:58

sneeze - if it's any consolation dd has always hated her stander and gait trainer. When she was 4 or 5 she would wail to be let out of it. With having older siblings we also have a wii, and we have found that her gait trainer fits around the balance board for her to play wii fit - the running and cycling work best, but she also likes the yoga poses and a few others. We also got her a nickleodeon fit game which she had been playing at therapy - for her activities on it you don't have to hold the control, just march on the balance board.

madwomanintheattic · 21/09/2012 16:10

Oo, clever!

Are you getting hydro pool time, too, sneeze? We used to do a lot of stretching in the water, as well. Have you got his name down for RDA?

Which walker have you got? I can't remember. Can you take it outside? Or is it too big to transport easily? Dd2 loved indoor shopping centres. It was a royal pita as we had to take everything to the mall (fortunately we had a galaxy) but she found the floors easy to manage, and the scenery distracted her. You have to go when it's quiet... When she got really proficient we toyed with the idea of putting a rein onto the frame, rather than her... People were usually really good - very smiley at her, and she just loved that she was walking at the shops. My very very favorite trip out with her was on holiday. We had a house on the beach front, and she walked all the way along the promenade - literally all the way. The sun was shining, the beach was there to be looked at, the people were smiling and moving out of the way. Lord, it took hours but she was soooo chuffed with herself. Dh was running around with the other two, onto the beach, and watching the waves, and back up the next set of steps.

(we had a couple of epic failures as well. Grin)

She's 9 today. Grin

wentshopping · 21/09/2012 16:17

Happy Birthday mad-dd! DD was 11 (can't quite believe that) 2 weeks ago.
A while ago, I took dd to the zoo in her gait trainer. Unfortunately we didn't get to the giraffes as they had been moved, so I ended up with her under one arm, dragging the gait trainer back to the car. Definitely had to have chocolate (from my secret stash of UK choc) after that.
DD loves cooking apps on the ipad - more pizza, more grillin', more breakfast etc, and now we get to listen to Justin Bieber in the car as she scrolls through her collection of music videos.