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.

Hi All, Thanks for the advice. Ihave been told that it is unlikey that DS will get any more 1:1support (during term time) under the early years funding as 8 hours is alrady seen as very high level, and as I have mentioned before, it is only for term time anyway, so doesn`t solve the problems for the school holidays. I have discussedif nursery can fund 1:1 in the holidays and I have yet to had it confirmed but it is unlikely, as I have had a chat to the manager. Has anybody been in this situation and how did you resolve it? I have heard that settings must have 5% of their budget protected to use for special needs. Anybody got any more info on this? At the moment I can only think that we will have to fund the 1:1, (no idea how much it will cost, though cant be cheap) for school holidays or if I ask my employer if I can work term time only for 3 days not 2 days all the time (and try and re-jig all DS appointments/therapies/intervention group etc) into less days. I guess the other option is to see how easter hols go etc. Anybody got some more suggestions?

Also, as I have been thinking of 1:1 support now, it has made me think of DS whenschool age. How you you all manage childcare for your CP DC's for wrap around care? Before these 1:1 issues we currently have I had assumed that I would use breakfast club and after school club but now see that it may be more complicated as DS would probably need 1:1 support in these and I am assuming as they are not 'èduation' then unlikely to/be funded by school 1:1 (if he gets one!).

Hi sorry its been a while, I need to catch up.

Well the move went well, been here nearly 3 weeks. The day we moved in there was already a letter here from dds new physio with an app. Which is Tue. Nothing yet from dds new consultant, or her old one who said she would send me a copy of the report she was sending to the new one!

Anyway can anyone tell me time frames for splints and piedro boots. I'm hoping the new physio will start the ball rolling asap for dd. It's been around 6 weeks since physio said dd would need the splints and 4 weeks for the boots but because we were moving she said no point in referring. Dd is now cruising :) which is fantastic but her R leg drags and doesn't lift right and her toes are curled all the time.
So how long from referral to casting/ fitting to actually having them, also what happens when they grow out of them?

Hi Melmo,
I am new to the messageboard, so Hi!

I only have experience of Piedro boots. DS is on his second pair. We were fortunate to get the 1st pair immediately at the othotics clinic as they had been ordered for another boy who outgrew them before he had them. I dont know how long he had been waiting for them though. The second pair took 6 weeks from being measured up. It is not the best really as childrens feet grow so fast. I think that chidren are expected to have outgrown shoes before being given another othotics appointments which is pants since you hve to wait another 6 weeks after the appointment beforeyou get new ones. It may be useful to buy a foot measurer (clarks sell them) to keep a tab on shoe size. The clarks shoe measurer is in mm and you have to access the clarks website to convert to shoe size, (though they are not the same sizes as piedros) as piedro are european sizesI know that clarks G are Piedro width 6. Gilbert and Mellish will send out brochuresfor piedro boots and they have a size chart in it. It lists all the piedro sizes and the range of foot lengths for that size. I looked into all this as I felt it too cheeky to take DS to clarks to check his shoe size when I wasnt going to buy their shoes! Also I know gilbert and mellish do sell piedro brand foot measurers but they are 40 pounds i think. Ome physios may also have the piedro foot measurers too.

I hope your move went well and it is good that your DD is criusing. Every milestone seems even more special doesn;t it?

You can also get the size chart online at Gilbert and mellish but you have to search for it! We got a pair of shoes in 2 weeks recently as DGS was crying when his shoes went on and toes were all red before we realised they were too small. Usually it's 3-4 weeks. AFOs s take longer 6 or so weeks after the casting.

FB have a buy and sell and swap page and often have piedro boots on there and on eBay. Usually very cheap or free and will tide you over until the new ones come through.

with us it takes 2 weeks afetr the casting to get the orthotics... if they are right which often they are not. It's another postcode lottery. The orthotics usually last about 8-9 months though

Hi Melmo glad the move went well and great news on the cruising! Welcome back to the thread (no-one ever leaves!).

DD doesn't have splints, but I too can give our timelines on piedro boots. Takes about 4 weeks to get an appt for foot measuring at the hospital, boots are then ordered and they take about 2 weeks to arrive. We're notified when boots arrive (phone call) and DH picks up boots from hospital (no need for shoe fitting appt). I arrange an appt direct with the hospital every 3 months for measuring, and she's always grown a bit and gets a new pair ordered. So once you get your first referral, it's then up to the parents to just keep taking your child in for re-measuring.

Also, top tip from our hospital, was to call in daily about 10am to check for cancellations for that day, and they'll reschedule us into the cancelled appt slot. I've done that twice successfully and got same day appt :)

Hey chocolate. Gosh, you sound in quite a predicament with the childcare :(

It probably won't help, but my mum was helping with the childcare while I was working, and I've recently stopped work (not renewed my contract) in order to meet all the therapy/med appts, to give my mum a break and to save my sanity!

It's a shame you can't get more 1:1 and that the nursery cannot stretch it out over the holiday periods :( OK, have you thought of approaching any charities for support to fund the 1:1? I've not done this so can't give you any steers, but I know Scope and Cerebra are well known CP/neurological disorder charities. Or perhaps something in your local area?

Failing that, sounds like you might do well to employ a childminder or nanny to cover the wraparound care. This might be cheaper than funding 1:1 in the nursery. So use the nursery for whatever is funded, and use childminder/nanny for the remainder. Do you have an employer salary sacrifice scheme for Childcare Vouchers? If you do, at least you can pay for childcare tax free (makes a big difference).

Our primary school prides itself on being 'inclusive'. So given that DD has a statement and 1:1 provision has been detailed on it, I am under the (naive?) assumption that she'll be welcomed into after school clubs alongside her peers (seems 2 after school clubs is the going rate allocated here). I'll ask the SENCO when we meet after Easter (Good point and added to my questions list!). I think having the statement under your belt might put some worries at ease. But perhaps also speak to your preferred school's SENCO and ask their advice and what their school SEN policy is.

So sorry, none of that seems massively helpful :( if I think of anything else, I'll come back on x

chocolate hi and welcome. 6 weeks for shoes! Wow, can't believe its so long. Will have a look for a shoe measurer on eBay. Each milestone is great, dd will be 1 this month so to be cruising is a great step ;)

sneezecake even 3 weeks is a long time to wait. Sorry iv never used fb but will have a look on eBay. I can't remember which splints physio said dd would need. The move seems to have messed my memory :)

everysilver do they not normally fit well? I thought that was the point in having a cast put on their legs, do they make them bigger for growing into? Lasting that long sounds good though.

Sorry posted too soon
everyday well they don't seem to make anything easy for us. You would think they realise children's feet grow all the time so would give you a foot fitting every few months. But noo we have to add another job on our list. Will try the phoning in the morning trick though :)

Off to get ready to pick dd1 up from school, takes 20 mins to walk there :( already been twice today

Sorry for my last post, I just realised how negative it all sounds :( sorry

Think I will print this out and keep checking foot growth.

www.gilbert-mellish.co.uk/Images/Upload/downloads/Piedro_Footwear_Table2012.pdf

melmo don't apologise! 6 weeks IS nuts to be waiting for a pair of shoes fgs!

I'm starting to get worn down by the repetitiveness of appointments and being the one doing all the 'researching' and 'thinking' and 'applying' and 'asking' and 'form filling'. You're not being negative, you're being human like the rest of us x

thanks for the chart Little Sneeze's Granny x

We have just returned from dds first appointment with her new physio ( although it wasn't the one assigned to dd). She was really pleased with dds cruising, she thinks dd will be walking soon :) new physio is not referring dd for AFO or piedro yet, she is worried about them restricting her movement in legs as she is moving her R leg very well. So all that worrying for absolutely nothing(yet)

Thank you all for all your advice

melmo. That is just fabulous

Great news Melmo x

Yes you must be so pleased. I would put smileys etc but dont know how (only recently got tablet too so a bit behind with technology).

= type [ grin ] without the spaces.

Smileys list is below for the word to go in the square brackets [ smile ]

Happy New Tablet Chocolate so jealous enjoy your surfing

Thanks we are very happy with her progress, considering the size of damage to her brain we can't believe she is nearly walking, its so overwhelming to hear your beautiful baby/ child has cp your mind can't help but race. To have them do anything new feels so much more special.

(im also very behind on technology :) all I do for smiley face is : with ) right next to it. Sorry if you already know that)

oh yes, i forgot about : with ) I'm a technophobe - just ask DH! I just joined Facebook this week….

yes new things are such a buzz, I completely agree. DD2 has only just started to give hugs with her arms around and squeezing. Fantastic feeling :)

Giving squeezy hugs must feel great :)

Old granny sneeze does tech. Moi is on the ipad. Also do Facebook lol

Too much tbh

It's so lovely when kids do so much better than the predictions!

Squeezy hugs are great . I was in (happy) tears last week when I got my first one :)

Granny Sneeze, we all know on here that there's no way you're an 'old' granny, so give over!

Thanks Everyday for the extra advice.

I would like to ask you all here on this thread what your experiences have been with pushchairs or wmheelchairs? I currently have a silver cross 3d pushchair which has been great but not all types of pushchair are so supportive. Ds is now getting on for 2.5 and the little silver cross 3d is getting a bit small. I am looking for a replacement that can recline and takes heavier children. I know most standard pushchairs only go up to 15kg child weignt which I think is around 3 years old. Are there any good pushchairs out there for for heavier children? When are children entitled to special needs pushchairs (if required)? Thanks

Everyday.... 2 out of 3..... I don't do boots as I have short legs apart from uggs sooo not smart, but warm much rather my jeans and nike trainers.

. --pretend 'like' button as requested. Haha, don't press the screen like DD did to the TV last week it won't work

Chocolate, OT sort out buggies and wheelchairs as needed, not really related to age as far as I remember. Non SN buggies which are long lasting and take fairly big kiddies are phil and teds and the good old mini city jogger, which we have and we sat DGS in today at 5.5 and he just about still squeezes into it! Have a chat to your OT

We just got back from our trip to Brainwave and it's just brilliant as they are so helpful and knowledgeable. We were looking not to continue simply because the formal program wasn't getting done very much, ( though school are doing their own programme which is very similar) and we weren't sure if it was useful because of that, but they do a half day 'MOT' which we could you yearly just to look at specifics and check thinks like tightness developing. It's lovely to get an overview, especially as it all seems out of our control now school is so prominent. Which is fine but we also need ways of managing mobility at home. So we are going to continue. Totally shattered now and needing a good nights sleep

Hi chocolate. Dd is still little but I thought about this a while back. I asked up thread about pushchairs that dd could have for a long time, if I remember right re wheelchairs, dc don't get them until about 4 I think, I might be wrong though. We bought a bambini 3 wheel one. Only cost £100 and is really good quality, I couldn't praise it enough, my 2.4 yo fits in it too still with room.

DD HAS TAKEN HER FIRST STEPS I want to squeal. Not properly walking but is standing up, taking 1 or 2 steps then falling over, squeezy hugs all round :) :) :)