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

I haven't even got as far as worrying about shoes lol but her appointment is tomorrow, so doubtless I'll be back with a gazillion questions I forgot to ask!

I find the subtle differences between the uk and north america fascinating, went. I guess physiatrist must be one of those things that hasn't made the leap over the channel. And no-one in the uk ever mentioned stroke patients at all, whereas here it seemed a perfectly normal comparison to make. how funny that our experiences are so similar (again lol).

Is it a discussion appointment, or casting, mad? If casting, have her wear pants that she can roll up above her knee, and clothes that you don't mind getting splashed with (wet) plaster of paris.
One of my questions is always do they want to cast the foot flat or with a slight raise? My dd has a raised heel (very slight) in her orthotics.Also, once we had articulated orthotics, with a hinge at the ankle, they were way more expensive than the regular ones.
Socks - buy M&S school knee socks as knee-high socks here seem to be very few and far between, especially ones that aren't too thick.
Hope it goes well and feel free to ask away. Lol at our matching experiences too.
Sydney how are you? I thought of you the other day when I was getting my ramp van fixed and I overheard another parent talking about how they take their child from Houston to Boston Children's Hospital, and how the care there is so good.

I thought it was for casting... But I could be wrong. Prescription is for hinged, and physiatrist said they might choose to put a small lift on one, as she does have a smallish leg length discrepancy. She has no arches at all unless she's on tiptoe, so no idea whether they too build that in for support, any ideas? are there usually three appointments then? Discussion, then casting, then fitting?

Dd, however, is just wildly excited at the endless possibilities of design. There are butterflies on the website, which is just as well as dh has ruled no pink leopard print. I suspect she's going to be less enthusiastic when they are on. is dd happy to wear them?

I didn''t want to assume it was for casting, if your dr has only just mentioned it, but when we go to the orthotics place they cast right away, then you go back 10days later to pick up the afos, but there is always a bit of adjustment, so that one is like a fitting appointment - they can warm up the plastic and remould it if it is rubbing.
One time the guy was chatting away and made the orthotic around her foot without having her stand up - well the end result was the same as if you tried on shoes without standing up in them - no room for her toes at the end. I went completely crazy asked politely for a new pair with toe growing room, so I am careful to check that there is a thumb's width or so at the end of her toes before we take possession of them.
The process of casting (at our place) - rub the leg with gel and write on the leg where certain bones are - it's a special pencil which transfers to the plaster of paris; then wrap the leg in quick-drying plaster bandages, with first inserting a length of rubber tubing down the front; wait a couple of minutes, then out comes a stanley knife ( my eyes nearly popped out of my head the first time) and then make a slit down the front of the brace, where the rubber tubing is - it's there to stop them cutting the skin. The slit is so they can get them off the leg.
Ah the designs... we have had wild animals, butterflies, leopard (actually I liked those) pink camo, and currently, (against my wishes, but there we go) American flag. If you put white socks underneath, the design will show up, dark socks will mute it so its barely visible. We also get co-ordinating velcro colours. DD has worn them since she was a baby, so she doesn't really know any different.
Oh and get them to confirm benefits and tell you your co-pay so you don't have a heart attack at the appointment. All the best.

Omg, she's going to freak at the cutting it off...

Thank you, that is all brilliant! I feel like an expert!

Hi everyone haven't been around as dd has been really ill -twice, norovirus I think. She is much better now thankfully but seems very tired. The first bout scared us a lot as she stopped walking for a week.

Papier - so sorry to hear of your loss. I guess it must be difficult to grieve properly when you feel you have to keep it together to care for your baby. I hope this thread is helpful to you. Lots of positive stories of great achievements despite prognosis. Hugs to you.

Hairy - sorry op cancelled but as you say it was the right thing to do. Hope you get another date soon.

Yuk, noro is awful hope she's perked up.

Well, casting was done today and we have an appointment in two weeks for fitting. She was a bit twitchy and jumpy, so he had me hold her legs down and just give her a bit of support so the athetoidy stuff would subside, but she did really well. Even the cutting wasn't too bad, set off a few more twitches lol, but she didn't freak. Yay dd! She's opted for pink and orange camo.

He didn't give me the total price, but confirmed that our contribution would be the max that they are allowed to charge, at $500. AADL covers 75% and then anything left over from the max parental contribution. We can reclaim 400 through benefits, so only have to pay $100 ourselves . Which means (even with my crapola maths) that they are costing over $2000. Jings.

Oddly, even though we had to drive off into the city for an hour and a half and find the place, he's currently renting an apartment about 200 yards away from where we live. too funny.

(oh, and yes, she does have funny blue lines all over legs. Very clever stuff)

Hi all - hope your dd better now inhibernation, that sounds horrible

madwoman glad you got casting all over and done with and that dd coped ok

hope dd continues to improve inhibernation. the tummy bugs are vile though personally its the fevers that really worry us. DGS had AFOs cast by a useless new person who left finger marks indents and then cut one too short! Cute fire engines etc on them but they will need sorting. tbh DGS is a shocker and screams blue murder and does ballerina feet for the casting so its no wonder. a lovely cleaner gave a sobbing DGS £1.50 for sweets after the casting

Went and had a lovely trip to Brainwave, lots of good advice and some progress but not as much as we'd have liked, but all in the right direction so keep on trucking! DGS actually didnt cry for once! Some lovely kind sponser paid £200 off the fee, so hope to sent a special thank you card and xxx How sweet and kind some strangers are

Thanks guys Yes she is much much better. Walking almost back to how it was pre-viruses and appetite good, though very constipated which is a pita - no pun intended Ikwym sneezecake - the fevers are scary. dd did have a high temperature as well but Calpol brought it down to a manageable range.

madwoman - glad dd tolerated the casting ok. dd has DAFOs with a tellytubby pattern. Had butterflies before. It's awesome what they can do with these things. Maybe ten years ago we'd have had to jazz them up ourselves. I do wish they would make the kaye walkers more funky though. The colours are awful!

sneezecakesmum - glad you found brainwave helpful The thing about kids is that their learning isn't always immediately obvious - sometimes they consolidate what they've learned over a period of time so I guess what I'm saying is that although you didn't see a lot of progress it doesn't mean it won't come - just not yet We noticed with dd that she suddenly seemed to put everything together - and at a time when she wasn't even having physio (over xmas period).

Ah, Inhibernation, I told you before - lose the Kaye and get a croc. . There was one parked at the door of the orthotist on thurs and I said 'oooo, look dd! It's just like your old one!' had all the scrapes and bump marks in the right places but was still a fab sunshiny yellow with red. her wheelchair has the same colour wheels . I do remember a site that was a bit of a 'pimp my walker' thing though - and I think on skinuk they used to frequently post pics of pimped tripods etc. pink spangly ones...

madwoman - I would go for it if the pct funded it but given that it is hard work even getting lycra shorts from them I think it would be impossible. She has stopped falling backward now at least.

i have no idea whether i should say 'yay' or 'boo'.
move to hampshire we had the best therapists ever.

we have been so lucky. dd2 has pretty much got whatever she needed on a plate. lycra bodysuit included. it just should be like that for every kid.

I agree. We use dd's DLA to pay for private physio as she gets it less than once every 3 months from NHS. As we are home owners we have to pay for everything else - stair rails, grab rails etc. Consequently we have none of them. If we didn't have an older child settled at school we'd think seriously about moving area to get better provision for dd.

eh? why are you paying for adaptations?

or are you waiting to see longer term what she will need?

blimey. all of ours were provided. in fact i've got toilet surrounds gathering dust in the garage because she doesn't need them any more...

ugh.

Put it this way.......nothing offered to us apart from kaye walker and standing frame. They asked whether we intended on getting a stair rail. I said yes we will need one. They noted it but said nothing. It's partly my fault for not asking. I must admit I hate asking. I'm going to find out what we are entitled to.

my grandad would say 'don't ask, don't get'

mind you, by the time the stair rails and bathroom stuff was fitted, we were moving again six months later... it took a year the second time it was only two weeks, there was no way i was waiting a year again. we had external rails fitted for front and back doors as well so that she could get out into the garden to play in the summer without too much help. they originally said they could only do one or the other (apparently disabled kids are only allowed to use one door....) but the workman who turned up basically said 'what a crock of shit' and fitted both.

always worth asking. the worst that can happen is they say no. (then you can ask again later lol)

does she need a dining chair that fits the table with everyone else?

Yeah I know it's partly my fault for not asking. Mind you, when asking for the lycra shorts they asked me if I'd looked online (meaning to buy ourselves) and I said that if we weren't having to use ALL of dd's DLA to fund physio we might have some left over for other things and they looked a bit sheepish. But sometimes I feel a bit embarrassed because we are not as hard up as some parents they probably see. Otoh we are only paying the interest on our mortgage and don't have savings so hardly in well-off.

Still ok with a booster seat.

How bizarre that they only supply rails for one door! Wtf!!

Did anyone watch the programme about Nic Hamilton last night. He is Lewis Hamilton's brother and has diplegia. It was really good. BBC1 have got a programme each Tues with a focus on disability. Next week the programme is about someone with Downs Syndrome.

oops I meant hardly well-off. Not sure what "in well off" means but am sure we are not that either

Does anyone know a website that sells therapy wedges? The PT recommended wesco but can't see any on that site.

Hello again. Inhibernation sorry you seem to have such a battle. It really does seem to be one of those things with the postcode, and I am always so relieved DS seems to have such a good NHS physio.

All well here, well apart from the fact DS has outgrown his AFOs and ther wwit list for the next fitting is 9 weeks - we are about 5 weeks in. So maybe not that good after all.

We have ditched the lycra shorts - hurrah. Got used to the kaye walker, and had epilsepcy ruled out double hurrah. Now we are changing for one paed to another so see how that works as DS now getting out of the NICU follow up team and moving into the community.

Why haven't you got a wedge on loan? Grr. We had loan equipment coming out of our ears! This postcode stuff stinks.

Any chance of you writing to a number of local charities, and the local PCT, and the local media, and requesting that someone sets up a loan service for this commonly used stuff? It is completely outrageous that you are being asked to buy a wedge, tbh. Have you got any sn contacts (a parent support group?) locally that can all add their voices? So much nonsense that you should really not be having to think about.

There - yay! We were thrilled to get rid of the suit! fingers crossed for transition to comm paed x