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

oh, i also wanted to say - the solicitor has found the next flavour of independent expert for dd2's case (consultant neonatologist this time) so it rumbles on. next one is the midwife... fortunately no reports for me to read and comment on this time.

Outof - I had to chuckle at your turn of phrase, my own body managed to break my DS in utero, damned thing. I hope your case goes well, my ex-bil's dd has severe spastic quad cp as a result of medical negligence they are also going down the very long road of a court case. Is it harder putting a case forward from abroad?

The neuromotor appt sounds very interesting, I do feel that DS has been offered all he will be already, although I had talked to his physio about SDR before and she has recently told me that a child in our PCT is being funded for it - but she's very guarded about giving me an opinion on it.

we started it in the uk, but the whole thing was a pita. she was born in scotland (we moved to the south of england just before she was two) and so we have to have a scottish solicitor and use scottish legal aid, etc etc. we didn't know that at the time. on one spectacular occasion it took 8 weeks for us to receive a solictor's letter though. everything is done by e-mail now, so it makes it a bit easier. i have no idea whether at some point we will have to go back, it seems as though we are miles away from anyone being interested in dd herself tbh.

i do often wonder whether i should have contacted the midwife and gone for a cup of tea with her. i bet we would have had it sorted out much faster. i often wonder if she even knows the legal side is going on. do the individuals ever find out, do you know? or is it all pct driven until it's all been hashed out?

Very quick one from me tonight as I MUST go to bed...........hairy, massive congrats on your amazing achievement PCT funding is almost a mythical phenomenon. You must be over the moon. Will ds be having SDR at Oswestry?

outof you're my spooky twin in Canada, right? DD born in Scotland? OMG so was mine! (I did have a cup of tea with midwife, and she told me they had done an investigation, I wonder if they keep it on file in case I ever do anything about it)

sydney yes, I am proud of my daughter - and so must you be of yours. What a rollercoaster of emotions for you.

Hope you all get some sleep soon slowburner.

very maybe a good thing you missed the botox. We have done it once and it was not a good outcome. I had to hold dd down during the procedure.

Hoping dd nice and tired tonight as I took her for a bike ride after school.

went, yep, spooky twin. it wasn't the RAH in Paisley, was it? my midwife was truly lovely. weirdly the midwife who did all my antenatal care was on duty when i went into labour, and she volunteered to stay on after her shift as i hadn't had the baby. at the time i thought it was a brilliant and fabulous coincidence, and agreed to a student with her.

Welcome sydneyscarborough

surviving - it's Kristian Aquilina @ Frenchay Hospital in Bristol.

dd's walking seems to be improving daily - it's weird cos she had less physio over the xmas period. Can't quite work it out. Maybe the gap allowed her to consolidate some stuff.

Interested in the botox stuff. Considering it for dd but mainly to help protect against contractures whilst we wait to see if dd is suitable for SDR. Has anyone seen sustained improvement after botox or is it always temporary?

outof no, we were in the North East. That would have been one too many coincidences, wouldn't it?

sydney - actually, my dd can't do any of those things you mention either - totally dependent on others for feeding, bathing, dressing, getting in and out of chair etc. It's only been with the latest technology - eye gaze communication device, ipod touch and ipad - that she has gained a tiny bit of independence, which is a huge thing for her. Now that she can talk to us - although in fractured sentences, often with all the vowels missing - we can finally get an idea of what she is thinking. And using the communication device as a computer mouse, operated by her eyes, means that she can now play webkinz, or message on skype, or even hijack my facebook to message her sisters in another room. I have to do another school run in a minute, but I'll find details of our chairs etc and post later.

Re: Botox, my physio has found it varies from child to child. It is temporary, with the average duration of effectiveness being 6 months. However, in her experience it doesn't work for some children, some children have a good effect for 3-12 months and one child she knows is still experiencing a good effect 2.5 yrs later.

DS had a fantastic result but I can see its wearing off 7 months later - although he is still loads better than before.

Hth!

inhibernation - development is really interesting. especially when they are young, virtually impossible to tell which gains are therapy dependent and which would have happened anyway even without intervention.

went, have you read 'out of my mind' by sharon draper? it's a kid's book really, but written from the pov of a girl with cp who gets a voice system for the first time. dd1 had it and insisted i read it. it's a bit cheesy, but i think it's great as it 'normalises' kids with disabilities for those who otherwise might not get much contact or think about what it might mean for an individual. i love it as a kid's book, even if the actual story is a bit ott.

out of yes, I have read it - dd2 got it and read it last year; dd3's TA wanted to suggest it as a class reading book, but as they are only 4th grade I think it is a little above them. Also, dd3 has been with this year group since Kinder, so they all know her and her communication device, and just accept her - lots of grownups have commented to me how dd3 normalises disability/wheelchairs/devices for their kids - I found it is the adults who don't realise she participates to the extent she does. Maybe it should be required reading for adults.

sydney interesting comment about language used about disability - I wonder if it is a USA thing. I hear "handicapped" all the time, and have to correct myself if I am speaking to an American - eg they look blank if I say disabled parking space, but understand handicapped parking.
Ah handicapped parking - either we cheer on getting "the best spot in the lot" or I have to chase people and get them to move their car out of the space ("but I'm only parking there for a minute while I go inside blah blah"). A couple of weeks ago I had to ask a policeman to move his car off the marked off area so I could open the van door. But that's another thread, sorry to sidetrack...

Hi everyone, I'm just popping in to say Hello. I've not been on MN so much lately after receiving a few flamings on other parts of the board. My dd is 5, 5 at the end of March and the official diagnosis is Diplegia although it is likely to be changed to a double hemiplegia as both arms and legs are affected but her right side markedly more than her left.

She goes to mainstream school and has a great statement with 30 hours a week 1-1 so she even has support at lunch and play. She uses a mixture of independent walking, kaye walker, walking stick and wheelchair depending on the day and the distance.

She was very verbal from a young age and seems bright but she does have some fairly subtle learning difficulties which are holding her back with reading and writing. We recently had tests done for visual processing disorders which was really interesting. She is well aware of her condition and initially asked when she would get better. We've always been honest and never hidden a thing. A few weeks back she said she was worried that she couldn't ever be a mummy as she was scared that she would drop the baby . Pretty crap that a 5 year old is even thinking that far ahead. Anyway, we talked it all through and gave her the confidence to think she could cope and now she would like '30 babies all at once'!

DD goes to the Rainbow Centre for Conductive Education. Phenomenal place. I have read odd stories here about CE and I know the centres do vary but this one is very very good. We travel up from Bournemouth to Fareham - 1 hour each way. If you are at all within travelling distance I would recommend a visit.

Dd's biggest challenge for us is probably her continence and behaviour. She cannot seem to stay dry after a year of trying and failing and is now back in pull-ups for the time being. The stress and upset for all of us just wasn't worth it. It's confusing as we have been told that there is no physical reason why she can't stay dry and we have had all of the tests for UTIs etc. Dd is still having regular 'toddler' style tantrums and she can go on for over an hour. She doesn't sleep well and gets very scared and upset easily.

I'm currently mid-way through re-applying for DLA. Even though I should expect it by now, I was still floored by how depressed it made me feel. I have suffered from depression and GAD (generalised anxiety disorder) mainly triggered by the trauma of dd's birth. We are currently part-way into a case of medical negligence. I try not to think about it too much but it niggles away like all of the other fights we all have to go through.

This has turned into a bit of an essay, apologies . I am part way through this thread so will carry on reading and will hopefully learn more about all of your DCs.

• 6 at the end of march

Hangingbelly - so sorry to hear you've been having a rough time, both MN and RL. @ your dd worrying she would drop a baby but it sounds like you've done a great job at reassuring her I think we all worry about dropping a NB so perhaps she is just a bit ahead there! Please feel free to hang around here - strictly support only, no flaming

very - thanks for info on botox. dd's PT did a test and said dd would benefit from it in one specific site (can't remember the name of the site) on the left side but that it is generally good for them to do it symetrically.

How does referral for conductive education work? And do you have to pay? There's one in Putney as well. Neither are that near but we could probably get to Fareham within the hour.

belly, my two nt children were still having daytime wetting accidents at 5.5 - it was only dd2 with cp that had been reliably dry for year at that point, so i really really wouldn't write it off yet! dd1 is now dry (she finally 'got it' in the summer holidays between yr 1 and yr 2) and ds1 is only now reasonably dry in the daytime in yr 5 (with occasional accidents). that said, i think it is generally more tricky with a diplegia dx? have you got the full range of support stuff so that she feels safe using the toilet etc (and at school?)

where are you at with the case? we're into our third legal aid application for the next expert opinion...

tis pretty safe here. i think even the most hardened aibu-er wouldn't bother traipsing onto a cp thread... glad you made it x

Possible stupid question...........but is there a CP friendly alternative to wellies? Only dd's usual boots are getting trashed when we go to watch ds play football.

Have a similar issue with slippers - death trap! Have resorted to using slipper socks instead!

sydney looking at your blog pictures, your dd's chair is nicer than the ones I have been offered a look at - dd has a Permobil Koala (power chair - love it!) and a Quickie Zippie. This is probably an outdated model now, and we got it because it folds (for travelling), but gets wonkier with every folding/unfolding session.
www.sunrisemedical.com/products/product_detail.jsp?PRODUCT%3C%3Eprd_id=845524441787891&FOLDER%3C%3Efolder_id=1408474400872700&ASSORTMENT%3C%3East_id=1408474400872674&bmUID=1326467444430
I also have an alvema ito for travelling to the UK now - folds up like a stroller, nice supportive seat and footrest, and good chunky wheels for going dog-walking with my sister. The only disadvantage (this is going to sound mad) is that it doesn't look very wheelchair-y. So I have to draw people's attention to it at airport security and when boarding a plane so it doesn't get treated like "just another stroller". I will try and put a photo of dd on her travels in it on here.
Does anyone else have any good chair information? Ideally for dd's replacement manual chair I would like to try big wheels at the back so she can try and self-propel. However, my wheelchair rep has said that big wheels mean that you lose tilt-in-space. I want to see if I can avoid all the extra metal tubing that Sunrise Medical seem to love to bolt onto the wheelchair frame.

hello to belly

have a good weekend everyone - long weekend here as we have Monday off school :)

inhibernation does dd wear orthotics? My dd lives in her trainers which fit (with a little wiggling) over her orthotics. For out of school time she has some crocs - do they make wellies? They are quite flexible and a little stretchy so I can make them cover the orthotics nicely.

we always tried to have two lots of oiedros on ther go at a time, the 'regular wear' ones, and the old extremely scruffy ones. tbh, mostly we just trashed every pair of piedros.

sometimes walking boots (but they don't come up very far), and recently we've been using more supportive snow boots.

the only thing dd2 wears wellies for is riding now - and even they are studier wellies with a heel on. walking in wellies for wobbly kids is a night mare.

really you just have to try not to think about stuff getting wet/ dirty/ trashed and pretend it doesn't matter... and try to keep your hankering for baby blue suede piedros (or pink ones) to a minimum. (been there, done that. they were gorgeous. for about twenty five seconds.)

dd2 has never owned a pair of slippers for the same reason. it was awful when she was about 4/5 as all she wanted was blardy slippers with dora or whatever on them. and well meaning aunts would buy her them for christmas . and then we'd be trying to explain to her that she had whacked her head/ fallen down the stairs because of the damn things, and would have to lose them in the trash.

went/syd, yy, hadnicapped is def still a north american thing. it's interesting how the language used varies so much, even in english speaking countries!

Thanks wentshopping and outofbody/madwoman
I laughed at your post madwoman
Yes dd wears AFOs. I haven't yet managed to find trainers that fit over them but she has some converse type boots from Next which have a side zip as well as laces. Apart from it being a bit expensive to buy more of these just to get trashed (would prefer something in a wipeable fabric), I'd also prefer something that she could tuck her trousers into - like wellies or snow boots but standard ones would be totally unsuitable.
Perhaps I should wait, as she is about to have new AFOs fitted so it looks like we need to buy some new shoes soon anyway. She's also grown out of her normal shoes (for the times when she isn't wearing her splints - though this is less and less often). I have to confess to LOVE getting her new shoes though as they look so pretty for about 2-3 days before getting trashed. I learned very quickly what type of shoe to avoid - suede, light colours, any shoe that doesn't have a bumper on the toe.

dd has never worn piedros - not sure why they have not been recommended. Too heavy for a diplegic perhaps? Just a guess really.

crocs are great - we were thinking of fixing some to dd's trike so she can pedal with her splints on. Not so great for winter though.

if she wears afos then that's probably why - there's usually no need for both.

have you tried really cheap trainers (asda etc)? usually with afos it's all you need. i know a few people that buy and remove the insole, and wear and dump regularly. because the support comes from the afo, in theory you don't need anything too supportive (it obv has to be snug etc, but the ankle support isn't essential as long as they've got a good heel cup that holds around the afo well?

i do confess to dd2 having been free of all support and orthotics for about two years. unfortunately you can tell this from the state of her ankles/ feet, which is why we're waiting on our referral. the physio has already discussed afos with me, but neither of us are brave enough to mention them to dd2.

hark at me teaching granny to suck eggs. sorry!