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

(950 Posts)
Galena Tue 29-Jan-13 08:58:56

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.

thereonthestair Tue 29-Jan-13 09:26:22

Glad you started a new thread. I meant to last night but by DH came home!

DS is 2.10 (actual age- like many of us he was a prem) spastic diplegia uses a kaye walker proficiently and taken 2 steps independently ever many months ago. We are battling the NHS about rubbish physio, and paying for private. Beginning to think about SDR and great fans of botox. However he is bright, a complete flirt and I am told is manipulative and wilful even for a 2 year old.

amymouse Tue 29-Jan-13 13:32:16

Brilliant, I just joined and then it ran out! Galena, I remember some of your posts from the Bliss boards, when I was searching for information around diagnosis time some of the past threads popped up. And hello, thereonthestair. Can I be nosey and ask why conductive education didn't suit you-it's sometimes we are considering but I'm rather on the fence about how it will help us?
DD is 2.5, also a prem and can cruise holding hands and create exorbitant amounts of mess and giggles! We are having physio, hydrotherapy and awaiting SALT as she also has delayed language (though signs, thank you Mr Tumble). We were just told this morning by Early Years in our area she is as bright as button and they have no concerns about mainstream pre-school/school when they come up next year and will just coordinate to ensure her physical needs are met. Yippeee!

thereonthestair Tue 29-Jan-13 13:49:53

We didn't think conducive education was for us because (and in no particualr order). Ds does not seem to have any additional learning needs, his nursery are fantastic and incorporate what DS needs into what they do anyway, we did not want to let DS be too "different" just because he cannot walk, I am particularly antisocial and don't generally value the benefit of groups and group settings over the individual and I think even if there is a group setting the sooner DS can manage in ordinary society the better, the academic studies don't indicate that it improves outcomes - and logically I can see no reason why it would, at the moment I am hoping DS is not bad enough to need anything else, and even if he is he is still little. I didn't see how it would help but did see that it would take time I don't have (I work basically full time although technically 4 days per week, ditto DH works full time) and there are only so many things I can think about. Because I work so much I have a habit of trying to outsource what I can to other professionals and stay as DS mother and conducive education wasn't available where I live.

Personally I am always looking for the evidence not the anecdotes. (It's my training I'm a lawyer) and I didn't think it was there. I am hoping that I don't conclude the same about SDR because I am still looking for the magic wand (and failing that a reliable way of improving an outcome for an emotional and risk I am willing to take)

Verybusymummyof2 Tue 29-Jan-13 19:56:37

Hello everyone, I joined towards the end of the last thread and found everyone so so helpful and supportive at thisreally difficult time. thank you!!!
Your little ones all sound fantastic!!

I am just starting out on this road, My little girl has just turned 1. She is 9 months actual, born 3 months early. She has no diagnosis yet - but I most definitely suspect CP. she is not rolling, or sitting and has high to normal tone in all 4 limbs. But She is getting stronger and can now grab and suck her feet!!
We are strongly considering Anat Baniel especially as we have a therapist just 20 mins away. Has anyone any experience of this??

chatee Wed 06-Feb-13 11:52:59

Hi ALL,( sorry the links are for UK info - but might help you to find more local info)

Just want to raise awareness of the following groups who can help children with cerebral palsy to participate in sport. Please feel free to add organisations that you know about, generally most offer opportunities to children 6 years and over but get in touch for more up to date information.

Try to make contact with them as they will help you to find out what is available locally to you (or if there isn't will help direct you to how a sports club can become inclusive and

HairyMaclary Wed 06-Feb-13 12:32:53

That's for all the links Chatee, I am struggling to rind things local to us, which is a surprise as we are just outside London and I thought there would be lots.

chatee Wed 06-Feb-13 12:35:55

If you want to pm further info and interests I will 'search' my contacts info for you Hairy

ps How is your ds getting on?

HairyMaclary Wed 06-Feb-13 12:46:01

Thanks Chatee, will pm, but part of the problem is that he doesn't know what he wants to do apart from run, which he can't really!

DS is fine, we're back in hospital this week for more physio, hence me being ver bored and stalking all the MN boards and firing off enquiry emails to all and sundry!

chatee Wed 06-Feb-13 12:48:34

we were there last month for a week and december for 3

chatee Wed 06-Feb-13 12:55:00

ps i have one currently wide sitting at the moment too - its now the lunchtime routine

amymouse Wed 06-Feb-13 22:41:16

Hello again, in terms of equipment did you all have things offered or have to suggest then push for things? We currently use gaiters and Piedro boots but have been wondering if a walking frame would help in terms of increasing DD's indepedance. She isn't currently at nursery, but I do feel for her as when we go out and about she can't really go anywhere unless I can hold her hands walking or there is a wall she can cling into for dear life! At home she is really confident and full of beans but around other children she seems incredibly placid (which in some ways is good) and can get pushed around a lot. Physio haven't brought up using one yet, which I wonder is because I am at home with her so obvs she always has me there for her. But she is 2.5 and not walking yet and I'm not sure realistically how soon she will...what has anyone else found best?

HairyMaclary Thu 07-Feb-13 08:42:32

We had a walking frame, I slightly pushed for it as I was pregnant at the time and wanted DS to have some independence once DC2 was born. One physio,a very experienced one at the conductive ed place we went to, looked askance at it when we arrived and muttered something abut how he might be better off without it. I diddn't ask why as I wanted it, DS loved it and a physio gave it to us, so what could possibly be wrong!

In hindsight, DS is 8 next month, I think she may have been right. In it DS was independent BUT he learnt a really bad gait pattern, to walk really fast and on his toes - all to keep up with his friends. This gait pattern is very, very hard to break now we are post SDR and he has the capacity and ability to walk in a perfect gait pattern but re retraining the movement pattern is proving hard and frustrating.

If DS had been the type if boy to go slowly of his own accord then it may have worked better but my suspicion is that without it, Ds would have learnt to walk eventually, but more slowly and in a proper, or more normal, gait pattern which would have been better long term. This has to be balanced though against what he got from being independent .... Unfortunately there are no perfect answers and everything to do with CP plays one thing off against another!

sneezecakesmum Thu 07-Feb-13 22:09:51

Verybusymummy. We have tried ABM with DGS who is now 4. He had free smile lessons from a practitioner who had just started specialising in children and had already done 3 (?) years and was already a physio - so well qualified! DGS had a good few lessons and it was amazing to watch how brilliant the practitioner was with him, and how DGS would go into the 'zone' that is mentioned in anat baniels book 'child without limits'. I also have the DVD set ordered from the US. DGS seemed to do more in the way of movements following the lessons, and had better fluidity of movement. If we'd had lots of money we would have continued them but I think they are better if started on younger children (1 ish) or younger. Definitely have a set of lessons if you can. We still use the principles and think, along with other things, it is very useful.

amymouse. We bought an old walker of ebay when DGS was 2ish as physio were being a bit sluggish and he loved and and took off waking straight away. Funnily he walked better in the ancient one than in the new shiny one from physio. In that he just pisses mucks about swinging his legs together and trying to see if he can disappear down the chest harness grin When he does walk though it is with a proper gait pattern, but then he is not SD which can give children a poor walking pattern sad

everydayaschoolday Tue 12-Feb-13 01:08:52

please can I de-lurk and join in? DD2 is 20 months and was diagnosed in Nov with CP. I think it's Spastic Hemiplegia (high tone in right arm). We've sussed sitting now, Jan we got pointing with a finger and this month we've got 50/50 getting food to mouth with her right hand smile We're getting a little further forward each week.

I wanted to de-lurk to thank HairyMcClary (love the name, we love the books) for the walking frame advice. DD2 can commando crawl, roll over, slow side step holding sofa, but not 4 point crawling or walking. I was considering a walking frame but think we might wait a bit now. Physio has not mentioned it yet and OT has just got us a standing (not moveable) frame for her.

I'm going to continue to lurk for a bit as I feel totally out of my depth with all the abbreviations and the education stuff. But thanks for being there and letting me sit at the back while I google all your terms catch up. Please, what is SDR? In my RL it is Strategic Defence Review blush

thereonthestair Tue 12-Feb-13 07:54:54

Welcome everyday. As regards walkers ds has a kaye walker and a rollator (forward facing). He got the Kaye walker this time last year, and at the time was 22 months actual. He could sit, crawl and cruise. Anyway we battled and battled to persuade him there was a point to using it. Also however he mainly had it in nursery and we didn't have one at home to, and didn't transport it backwards and forwards as we travel by bike.

Anyway 10 months later ds walks well with the walker now, but his gait pattern does come and go. He walks straighter with the rollator but it is harder work. We also have a kaye walker at home.

Do I think it is an advantage to have it? Yes, because it does make ds independent and saves my back. One of ds physios thinks that ds will be reliant on the kaye walker for a while, the other one is in the school that he would probably have chosen to walk eventually. So will I think the same in a few years, who knows? I think ds gait may be a bit more wonky than it might be. But he loves being like the other children and it does make him fit in more. It also got him from crawling all the time which had been a big issue and in the end stopping crawling was a big issue for us. In the end it was the crawling that became the biggest problem and the walker was the biggest solution.

HairyMaclary Tue 12-Feb-13 10:41:51

Everyday - in our area it is standing frame or walker, not both, that is provided. This is because weight bearing through the feet is so important for the hip development, I think DS needed them both, but that's hindsight talking!

Personally in your case, I'd stick with the standing frame only for a bit longer until there is an obvious need, like thereonthestair says, they can be invaluable in certain situations.

HairyMaclary Tue 12-Feb-13 10:50:37

Ps SDR stands for Selective Dorsal Rhizotomy, a major operation that is very popular with parents and children who have spastic diplegia CP. It cuts some nerves that leads to the legs and drastically reduces the spasticity easing movement considerably.

DS had his done in April last year at an NHS hospital in Oswestry in Shropshire and we are very pleased with the outcome. It's very, very hard work though with post op rehabilitation. Lots of families choose a slightly different style of SDR performed by a doctor in America at the St. Louis Children's hospital. This styleof SDR is now available in the uk at Bristol and Leeds (possibly elsewhere now too). However it is very hard to get funding from the NHS for it and most families fundraise for the op and the aftercare. We fundraised too for post op physio as not enough is provided by our local team.

If you look at the last thread there is lots of info on there, at least one other regular contributor to the thread had it last year in St Louis and a few more are getting close in the UK. Lots and lots if info on the web too!

everydayaschoolday Tue 12-Feb-13 22:10:07

thank you for the welcome, and the replies. I'll check out the previous thread as advised and google the kaye walker and rollator thanks. We have our next physio on thurs so I'll discuss standing frame/walking frame with her then. But think we will stick with the standing frame for a bit. Glad your DS is doing well post op HairyMaclary smile

sneezecakesmum Thu 14-Feb-13 21:18:15

Welcome everyday.. So pleased your DD is doing well. I dont think SDR is done for hemi (though it may change in the future as I cant see why not?? (discuss!)). The good thing with hemi children is they almost always walk smile Their gait has to be watched carefully though and you may get some AFOs for the affected leg. I would definitely contact HemiHelp. They are for hemi children and I've got a useful DVD as DGS (grandson) is weaker on his right arm so lots of good exercises.

DGS is one of the more unusual CP presentations and not much has been offered medically so far but the neurologist recommended a trial of benzhexol (artane) which we are so hoping will help with the unwanted movements.

inhibernation Thu 14-Feb-13 21:55:00

Just briefly......I believe Dr Park in St Louis has operated on some hemi children. Have a look at the SDR St Louis FB pages.

Galena - yes I believe we are in the same fb group <nudge nudge wink wink> smile

amymouse Thu 14-Feb-13 23:34:30

Probably stupid question-google images isn't amazing-but what is the difference between rollator, kaye walkers etc? We have no experience so to me they all look quite similar!

thereonthestair Fri 15-Feb-13 07:12:21

Kaye walker goes behind ds, so it is sort of pulled. Rollator is forward facing, like a baby's toddle truck or old persons Zimmer frame and you push it. The kaye is the conventional walker for diplegic children as they have arm strength and in theory are easier to use, but ds can sort of hang off it which is why his gait is dodgy with that in a way it's not with the rollator.

Hangingbellyofbabylon Fri 15-Feb-13 11:00:12

Hi, just popping in say hello really. dd is nearly 7 and has double hemiplegia (both sides affected but right a lot more so than left). She used a kaye walker from 2 and then walked independently from aged 3. The kaye walker has benefits socially as it is behind the child and so they can approach other children, walk up to a table to play etc without there being a physically barrier in front of them. Using the kaye walker did not affect dd's gait in my opinion but even it it had I would find it hard to have regrets as it gave her so much independence and gave the chance to be alongside her peers. She still uses it now on 'wobbly' days and there will always be a place in our heart for her 'Mr Walky'.

We came through the Conductive Ed route - I know that not all centres work in the same way but I can wholeheartedly recommend the Rainbow centre in Fareham. The staff are inspiring and we credit dd's progress largely to the Rainbow Centre. We travel up from Bournemouth and if anyone is within driving distance it would be well worth a visit.

The other big thing we've found to help is The Bowen technique. dd has this treatment from 18 months old and it is the main reason that she now has excellent use of her right hand which was previously tucked up and pretty useless.

I wanted to ask parents of school age children here how do you cope with the fatigue? I find dd gets more and more tired just from daily life. It builds up and she becomes more wobbly, more emotional and eventually I have to keep her off school as she cannot cope with anything and just looks like a little wilted plant. This probably at least one day off for fatigue every 2-3 weeks, and then if she picks up a normal cold it really knocks her out and leaves her tired for ages. When she is this tired she can't really learn anything either as her brain gets too tired to cope with reading books etc. She's at home today, flaked out on the settee with some colouring. Thank goodness it's half term, although if we dare go out at all she will end up exhausted again. Boy, this is hard work sometimes! We're cool with the CP itself and have varying therapies in place etc but the fatigue and the far reaching effects of it are really something else.

isw Fri 15-Feb-13 22:27:16

Just checking in.
Dd is 5 at the month spastic diplegia with some arm involvement, mainly her right. She had SDR in St Louis at the end of Sept last year - she was also accepted in Bristol but we choose to go with the quickest route as she is still in nursery. She uses a Kaye walker, we have always had a standing frame and a walker. She had a more supportive gait trainer from about 20 months and have moved to a Kaye as she got older and stronger. Her "walking" in the gait trainer was awful she uses to kind of jump and push rather than walk. But it was great for socialisation, independence and that all important upright time. A standing frame is good for hamstring stretching, wieght baring which helped the bones develop and when used in prone back extension and strength work.
We walk, soft play, cycle, swim, generally try to do Physio in real life situations but also have Bobath input to help with her retained reflexes. Her startle is still very pronounced.
Fatigue is a real problem we try and manage her activities and include stretching time and when she gets really tired she kind of curls up which in turn makes everything more tiring sad Now I kind of wiegh up what she wants to do and what she needs to do based on the Spoon theory which was written about people who live with pain andother conditions but i think works loosely for CP too

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