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Can any1 advise me on a special bed for my Ds, aged 2 and a half?(14 Posts)
I am looking to get Jack a comfortable safe bed,(that'll last a reasonably long time) closed in and with padding as he has frequent seizures, and an electric one would be good, can anyone advise me on this pls?
Well, my personal recommendation would be a Savi, but they are arm-and-leg territory, SS paid for ours. They are enclosed as high as you like (literally, up to the ceiling if you want), optional padding, electric raise, optional profiling.
There are other similar out there if you don't need so much enclosure, the hospice has loads - like big cot beds with half-height sides (if that makes sense), I can ask on Thurs when I see them what the brand is. But I'm sure I saw a couple of makes at Kidz south.
If you can postpone the electric raise for a bit, and it doesn't have to be houdini-proof there are a few "padded side" options which are much cheaper.
So, depends on what you need, really. Couple of links to old threads of mine;
one with a pic of our Savi bed and one with some links to other products
Hey r3dh3d yeah I have spoken to Savi, had a brochure, they start at £3000, but we are fundraising for Jack atm and are at £2000 so...., I told them I needed padding and the electric bit, Jack will defo need padding cos of seizures xx
can't you get a a bed through your local healthcare. do you have an OT they can help with things like this & for free. they supplied my son with an electric bed, think it might be a savi. this is because my son has cp, not sure if your circumstances are different?
There's this I have on my favourites for future reference!
Have you not had a home visit from OT? We haven't either yet, but it is on the cards, and they are going to look at his bed first - he's getting too big for a cot now.
There was another one but I didn't save it to favourites. I'll try to google now from the sketchy details I can remember.
How is Jack? OK I hope x
It was like this, but not this one (don't look at the price - eeek!)
Wish I'd bloody saved it now coz I can't find the right one.
Get on to OT. They should be providing this and should be carrying out an assessment on home aids and adaptions to help him and keep him safe.
There is also this charity who provide grants for equipment.
Fundingwise, ours went like this...
I spoke to our social worker about a bunch of issues with DD1 around the house. She referred us to their OT (my dim understanding is that stuff you might use at school is covered by NHS OT, everything else - effectively the stuff in the house - is covered by SS OT. That's the way it works here, anyway.) SS OT came and did an assessment in the home, and as a result agreed to sort a few things, mostly radiator covers and a new bed. They arranged for the SAVI chap to come and demo the bed, agreed the spec, booked and paid for the whole thing. It took a long time coming, but they sorted the whole thing.
We are also looking at something for use in holiday home/hospice. Because it's not a permanent bed, SS aren't allowed to fund it. But their OT is involved again and has given me a heap of info about charities who will fund or part-fund and says she will help me with the applications.
A permanent bed to keep your child safe in their own home due to their medical condition is NOT the sort of thing you should have to fundraise for yourself. Though you may have to push. We are lucky that our SS OT is very good. She says DD1's SAVI is the only funded SAVI in West Surrey, possibly in the whole of the county. Though she is v impressed with it now she's seen it in action, and would like to do more of them.
we are trying to get the chalfont safety bed at the mo
We've been meausured and quoted for a bed with high sides, tilting (dd needs to sleep on a slope), up and down, port holes for tubes and clear perspex panels so she doesn't feel shut in
Having a bit of a mare with it cos SS OT are fighting about how much of the bed is for a medical need - basically they are wanting money to come from PCT towards it. The PCT are now wanting to send their own PT round to assess.. and so it creaks on
Just to echo that you should not have to pay for the bed yourself, so please do keep your funds raised for the many many things that would be useful that wont be covered! unluckily if you are telling services you have raised funds they may well decide "thats alright, she doesnt need the bed covered then .
So do give it a proper go getting the bed funded first before you resort to using up your own funds!
We have the Kinderkey Cosysafe Cot here.
It's Electric, Profiling and has Trendelenburg positioning, with 80cm high fully padded sides on 3 sides - the front side is perspexed, with padding about a 1/4 of the way up. The height and padding was agreed on due to Josh's epilepsy.
It also comes in a lovely choice of fabrics and was paid for by I.C.E.S (Integrated Community Equipment Service.
YOu are doing really well with the fundraising, I hope you can get Jack an amazing bed.
LRC's bed is the one the hospice use. [nods sagely] The mattress is a bit high off the ground for us - the SAVI goes really low so DD1 can get in and out herself (hemiplegic). But it seems like a good 'un.
we have a savi tom-its fantastic but expensive. our local authority dont fund any beds at all so it was funded through The Cauldwell Trust. It was made to my spec-higher sides, all perspex (wood sticks are not good for cleaning!) high rise, trendlenberg etc. we also have a another very similar one-the Kayser, (sticks ) which we bought for the holiday house-we paid for it ourselves and we bought it from the clearence dept-it still cost £2.5k but it was worth it. Bakare supply both of them and they have a clearance dept (ex demo etc) on line. speak to Daniel or Emma if you phone them.
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