Support/Information sharing thread for parents of children with CP - part 3

[itsnothingoriginal]

So here we are - thread number 3 to provide information and a source of support for parents whose children have been diagnosed (or not yet dx) with Cerebral Palsy.

Welcome to parents finding us for the first time and welcome back to any who have posted before

[Summerdaydreams1]

I hope you get some answers soon missdee

Thanks moomin - I have rang around a couple today - it seems strange having to ask, I sillily feel embarrassed.
Can I ask how long it took from requesting funding to getting the trike. I would love dd to have it by summer.
And Great achievement for your dd - that's what I hope my dd will achieve

[Everydayaschoolday]

Hi Summer! It's nice to pop back and see old friends . I've not been on for a while.

Our Tomcat has been the best investment ever, and like Moomin we have the parent bar off now after a year of trikeing. We didn't apply for charity funding in the end, but when I was looking around I remember Cerebra standing out and some local charities like Rotary Club.

If you find getting funding is too difficult or might not come through by summertime, it might also be worth looking at second hand options. This Facebook closed group (ask to join, took me 2 days to get accepted) is for buying/selling SN equipment. They have quite a few trikes on there (inc Tomcat) for about a third of the price I paid new. www.facebook.com/groups/SNEUK/

[Moominmamma13]

Hi Summer, I can't remember exactly, will have to look back at some videos, as we filmed DD on the trike when the Tomcat rep came.
I think it was November when he came and she had her trike mid Feb, so not so bad considering Christmas time and the new year..
Did you call Cerebra, maybe they can give you a time frame..

[triplespin]

It was suggested that I post here. My 5 month old boy is displaying down red flags for CP.

I am looking for advice on feeding side of things. Did any of your babies have a strong tongue thrust reflex and how did you work around it for feeding with a spoon?

[melmo26]

Hi triplespin
Welcome to the board

My dd was tube fed as baby and taught to suck on a bottle but she took to eating quite easily so I wouldn't know what to suggest but I'm sure someone else will have some ideas

[goneHaywire]

Hi tailspin

My DD had alot of tongue thrust it has lessened with coaching as she's gotten older.

To keep as much food as possible in the mouth instead of everywhere else try putting the food/spoon to the side of your DC's mouth, that way its easier for them to chew with their 'side teeth' and when the tongue thrusts out it not pushing all the food straight back out of DCs mouth. You can try alternating between each side of their month so that DC can get practise chewing on both sides of thier mouth and also start to learn how to use their tongue laterally.

Good luck

[goneHaywire]

Anyone know where to find Smart BLACK orthopedic shoes for kids?? This has been frustrating me for over a year now. DC bacisally wears her piedros with everything (including pretty dresses)

[Everydayaschoolday]

Not posted for a while, but wanted to share an idea. Our lovely local special school came to visit our mainstream school to see if there were any resources they could share to support our DD2 in mainstream. They brought their laptop/tablet with a software called Clicker 7. Our teacher now raves about it. DD2 struggles with handwriting, so getting her ideas on paper quickly enough is difficult. Our school are going to purchase Clicker 7 so DD2 can do some of her work on the computer, to get her ideas down in time in class. She'll still do handwriting tasks to bring along her handwriting skill. We've just bought Clicker 7 on a home licence and its less than half the price the school is about to pay. DD2 is 5, just going into Y1. I don't work for Clicker 7 lol, just came on recommendation from the special school :) If you want to know more about Clicker 7, its here: www.cricksoft.com/uk/products/clicker/home.aspx

[mumsnit]

That's brilliant thanks Everyday. That sounds perfect for my dd

[Summerdaydreams1]

Thanks everyday might need that in the future. Dd starts reception in September - hope all is going ok with dd.

[Everydayaschoolday]

No probs, guys. On the home licence, you need internet connection for the software to run. I'm now looking at the Clicker Apps for DD2's iPad, so she can take it out and about. Apps are £25 (seems pricey but that's what her DLA is for :) ).

DD2 is doing great, Summer. Smashing sports day - she managed a jog down the track and cue rows of parent onlookers in tears :) We're deep in physio and SaLT treatment blocks, and on the transition from Statement to EHCP. It's all go here! Her school grades put her as achieving all her targets. School think she's great, and is adored by all the teaching staff and pupils. Her classmates are so supportive, it's really sweet to watch :) How are you getting on with trike funding for your dd? x

[melmo26]

Hi all how is everyone enjoying your summer hols?
We've just gone back here (Scotland) DD had her first day of nursery today, was only an hour and I was there but she done great, she went off and played with a lovely wee girl who took her under her wing. Was lovely to see her interact with other kids who aren't her sisters. She never has so was a proud moment. Hopefully she is happy to go in without me tomorrow.

Loads been happening with her lately, finally have a referral for orthotics so on waiting list now, had first SALT today for DD eating, her weight is dropping so we were checking she didn't have problems chewing/swallowing, she thinks it's more her stubbornness so referring her to physcologist to help us to get her to eat, if we can't get her weight up is diet and nutritionists. So food full of calories in this house :)

Her cpips app this year has shown changes in range of movement in hip, also her muscle tone in her back is vastly different so her spine has the beginnings of a curve so we're trying to correct that too.

Hope your all having a nice holiday

[Summerdaydreams1]

gonehaywire I only just saw your post.
I was recommended this website it is fab - I got dd some lovely sandal piedro try shoes and they are really pretty too.

www.equiptomove.co.uk/memo-footwear/manufacturer/?categorylayout=categories&showcategory=1&showproducts=1&productsublayout=0

[LovelyWeatherForDucks]

Just saying hi - my 1 yo DS has recently been diagnosed with cp - hemiplegia. Into a new world of endless appointments, worrying, and late night googling! Have been reading this thread with interest, it's been very reassuring and informative.

[Everydayaschoolday]

Hello LovelyWeatherForDucks Welcome to the thread
Our DD2 has just turned 5, and I remember those dark early days when she was missing milestones and we finally got her diagnosis (around 18 months).
I googled too - and felt very afraid for the future. The hard part is all the uncertainty. CP is such a wide-ranging condition, and coupled with the fact that our kids have an amazing talent for surprising us and beating the odds, its very hard to know what the future will bring.
From those dark early days, each month did bring more and more brightness as our DD2 developed, grew and started to meet some of those milestone (albeit later than her peers).
I honestly struggle to see her condition, I just see her personality. Sometimes I have to work hard to see her through the eyes of strangers. Feel free to ask anything you like on here, or vent on difficult days. This is a friendly and safe forum and we're all very supportive xx

[Everydayaschoolday]

Hi Melmo Glad first day of nursery went well! That sounds brilliant, well done mini-Melmo!
Sounds like you guys are having a busy time too - we go for a few months with nothing, then all the blocks of treatment hit at once and it's a whirlwind! We have 2 more weeks of summer hols and I'm deep in laundry having just got back from 2 weeks camping. Kids loved it but I'm pooped!

[Everydayaschoolday]

Sorry Gonehaywire we just get the orthotic insoles now so buy typical sturdy shoes from an independent store. Hope you find what you're looking for xx

[melmo26]

Hi LovelyWeatherForDucks
I remember the pure worry and fear at the beginning, we knew from a few days old DD had CP, I researched like mad until I found mumsnet when DD was 5 months old. I posted a thread asking for help totally clueless about cerebral palsy and was directed to this page. It has helped so much not only for information but also when your feeling at a low point someone here knows how you feel.
My DD has hemiplegic CP too, affecting her right side.

Everyday sounds nice to get away but always a bummer coming back with all the washing, I'm still catching up from summer holidays and didn't even go anywhere.😀 Got a tumble dryer today tho so should help.

DD has finished her first week of nursery and has totally surpassed our hopes, she loves going and doesn't want to leave. We are soooo over the moon that she settled so well.

[LovelyWeatherForDucks]

Thanks everyday and melm for the welcome and so nice to hear so well your DC are doing - the 'unknown' is definitely the hard bit - he is so sweet and gorgeous, it's hard to know anything is wrong until you compare him to his peers (bad idea I know!). My big worry at the moment is his communication - he doesn't babble (he's made a few sounds at different times then stopped doing them) though he is very sociable in terms of eye contact, looking around, scooting on his bottom over to where the action is.

Juggling all the appointments is proving tricky... we are average 2 or 3 a week, so that alongside a part time job and an older pre-school age DC is challenging!

[Everydayaschoolday]

I have a set of Dusky Moon Dream Tubes, fitted sheet and (unused new) spare fitted sheet to gift to a fellow MN on this thread. I gifted a set over a year ago for a cotbed/junior bed size. These ones are for a single bed. We used them when little one was in a single bed on holiday - not everyday use. Never had a puncture. Don't need them anymore and happy for someone else to enjoy them. I'm in Lincolnshire but am happy to cover postage. Just need an address (happy to send to the 'Mumsnetter of the house' - no need for names if you don't want). PM me if you'd like them. www.duskymoon.com

[melmo26]

Hi can I ask a few questions about leg splints? Specifically if you have a hemi child.

DD gets her first one mid November for her R foot.
What shoes do you buy for them? Do you have to buy different sized shoes to fit over the splint? They said she will have to get a size bigger to go over but then won't her L shoe be too big? Also DD nursery like them to have wellies for playing outside and going to the Forrest, are there any waterproof type boots that are ok with a splint as they said wellies are no good because she won't be able to bend her ankle.

[Kaffiene]

Hi, I can't help with the Hemi side of things but snow or walking boots generally go better over splints. You need them to open right up to get the splint in and "round the corner"

Just reading about people starting to use Clipper etc on iPads. Check out ClaroPDF it's an amazing app. You can take a photo of any worksheet the class is using and convert it almost instantly into an editable PDF document. So pupils using iPads etc can work on the same sheets as there peers with minimal fuss.

[Kaffiene]

This website is fantastic for all things ICT and all kinds of SEN

www.callscotland.org.uk/downloads/posters-and-leaflets/supporting-writing-difficulties/

[whereonthestair]

Hi. Memo ds is diplegia, but we use twister shoes. However a friend says Clarks run an odd shoe scheme where you can buy shoes in different sizes for hemi children.

On a separate point, and as I haven't posted for a while, I just want to update for those who are feeling down. My ds is nearly 7, diagnosed at 1. Anyway he has finally learned to both stand independently fairly reliably, but also walk. Not much, and it is very tentative, but he is level 2/3 and with a lot of work, sdr, Botox and physio I want to say it has produced results. Now he'll never be wonderful at walking but the difference in functional independence is mind blowing , and finally he no longer wants to crawl....,

[Everydayaschoolday]

Hi everyone. Not posted in a while. Just checking in to see how everyone's doing. Busy here with OT, botox and being measured for splints coming up shortly.