buggy advice please.

[olliewilliam]

hi my son who is nearly 4 has fgs syndrome ( no i hadnt heard of it either)
he has a lot of pain in his feet and leegs that is probably nerve pain ( waiting for mri on spinal cord)). he also has low muscle tone hyperextensive joints and wears piedros. his balance is quite poor.
we need a buggy for him for obvious reasons. he can walk short distances but then tires very easily. we have been referred to the wheelchair clinic where i am told we can get a buggy.

my questions are do i have a choice on what they give me? i also have a 2 year old daughter so i do not know how i will manage this. i also want something quite sturdy. we had a mountain buggy urban double when they were smaller but he has grown out of this about a year ago.
i would also prefer something that didnt look very "special" as he does have normal intelligence although his beahviour is up the wall. he has autistic traits and severe sensory issues as well as anxiety and panic attacks.

sorry for long post but i want to get this right i don't reckon my chances of getting something different.

any advice experiences welcome. we looked at the mountain buggy single bigger version but i can't push 3 wheelers for some reason

Hi, your son sounds a lot like my daughter. She's just 5, and we were referred to wheelchair services last July for similar reasons.

We were given the immediate choice of a Maclaren Major buggy, or a wheelchair. As we needed something immediately, and they had ordered a new Maclaren in for us to try, we took it. We could have had a voucher towards a different buggy from somewhere else, but this would not have covered all of the cost.

IMO, the buggy that we've got doesn't look particularly "special". It only tends to get noticed if we are next to someone with a normal sized buggy (as it's a bit bigger). At the end of the day, although it isn't particularly stylish it does it's job, and I know that my daughter isn't going to collapse in a heap!

I don't know if a buggy board would be an option for your 2 year old, but it might be worth looking at some. It's very unlikely that wheelchair services would give you a double buggy, I'm afraid.

we got a wheelchair when dd was 4 because a buggy seemed too babyish - having her in a buggy had begun to seem wrong

my 2 year old just runs alongside; sometimes she sits on dd1's knee or holds her hand other times she runs off

I have a double buggy, a double Maclaren, which is MASSIVE

since my littlest was 2.5 (she's three now, sorry didn't clarify that in earlier post) I have not used it - it is so wide you can barely go anywhere in it around town

does anyone now if the maclaren reclines for sleep?
i am toying with the idea of a easy jazz something stoller as it looks quite inconspicuous but its thousands od pounds literally.
however it does recline.
if you decide to take the voucher does anyone know how much it is?

julia

probably be offered a Maclaren major or a Blade wheelchair. Personally I find there's less stares of 'big boy in buggy' if you have the wheelchair. The Blade folds up too.

I think the voucher is about 200 quid but I could be wrong.

you know this is all tough to take.
i don't know if i can see my son in a wheelchair yet or ever
the maclaren looks very hard and uncomfortable

do the nhs offer anything else?

Depends entirely on where you live. Each PCT runs the wheelchair services thing differently and both offer a different range and fund it differently. Where we live you can get a voucher for quite a large amount and we opted for the larger version of the Mountain buggy which was mostly paid for by the voucher. The down side is it's not going to last more than the 3 years the voucher covers, it's not a "big" buggy iyswim. Also it's a terrain (fixed wheel).

You'll struggle I think to get a recline in a SN buggy - recline tends to be for kids who need it for postural/medical reasons at this age, and so tends to be more for the "proper" wheelchairs. The Mountain Buggy XL has no recline because the child's weight is positioned so far back (to make steering easy) that if it also reclined it would tip over backwards.

we live in cheshire

maybe i was being slightly optimistic about the recline, but ds does drop of to sleep often and get very tired, so i dont want him hunched up. actually we have this problem in car seats as well i cant find one in his weight range that does have a proper recline like the 9-15kg britax seats have.

what do you think of your xl? like i say we had a terrain but it has 4 wheels and swivel so ....?.

btw my dd has oxygen to carry about as well! not to forget the sats monitors etc.

maybe i will just stay in. along with oldest 12 year old autistic child i think i could be asking for trouble.

ollie the idea of your child in a wheelchair is hard

but I found it easier - it was about saying she was growing up, you see adults in wheelchairs but you don't see them in buggies iyswim

dd was much happier to be in a wheelchair than in a 'baby' buggy - she is physically disabled only - she was actually delighted about it

I'm not sure how the oxygen tank and sats monitor would fit on the Major tbh. It tends to be the default buggy for kids without postural or medical need but who it isn't practical to walk with for some other reason.

I suppose you could get the oxygen tank etc on the XL - the basket underneath is just the same and fairly roomy though you'd need to hold it all on with a bungee or something. But tbh it sounds as if you might be looking at one of the wheelchairs as they have attachments for that stuff - they don't all look like wheelchairs at all, some look more like buggies but they have the ability to add those sort of bells/whistles. I think you really are going to have to visit your local Wheelchair Services, get them to talk you through the pros/cons and what they will and will not fund given your requirements. Your issue is that the wheelchair systems are mostly expensive because they're so specialised and you don't want to be funding that sort of thing yourself.

We're very happy with the XL at the moment, but it really is just a standard MB frame with deeper canvas, higher rain hood and the ability to add a deeper footplate. Up side - it goes anywhere any other buggy does. Down side - she will grow out of it in a few years, it's not a long-term solution.

i can see this being a difficult one.
cappucino do you have a blade?

has anyone seen the jazz easy here it is.
i think it looks not too bad until you see the price, but its obviously designed for children with more severe needs than my son.
its the look i suppose that i find attractive.

btw i carry dd's 02 on my back in a back pack and she mostly walks, but she is only 2 and gets stroppy!

www.adaptivemall.com/thjaeastsi2.html

We have a buggy board (well a kiddy board but same thing) on the MB XL btw. Which is how we do 2-kids-at-once should I ever be insane enough to leave the house on my own with both of them!

you are not kidding, i havent mentioned the price to dh yet!!!!:O

Meant to say - yes I think I know someone with a Jazz or something v similar and yes that is exactly what I meant by "doesn't look like a wheelchair but has the attachments". They lug ng pump and suction round with them, not sure about oxygen.

I have NO idea how she afforded it though . I think if you can show a genuine need, it will be funded. And the oxygen issue might be need enough. Your problem is what if it is not sufficient need - but that sort of ££££ chair is still best fit for your requirements?

Yes, alas. They say it goes "up to a slim 9yo" but tbh I expect DD1 who is absolutely 50th centile to be out of it by 7 or 8. It's ideal for us as it is still a "buggy" and so we have no issues with lugging it around etc. I've not looked at the advance ones (freedom/independance?) but my gut feel is they will be very long and great for offroad or in the park but absolutely impossible around the supermarket or wherever. I think the assumption is you have a Major or a standard wheelchair for town and your large 3-wheeler for the country.

But as I say, haven't seen one in the flesh yet so I am maybe being unfair!

We got a Jazz Easys from wheelchair services, the main distributer in the Uk is tendercare

www.tendercareltd.com/

i phoned them and they told me that my local authority wheelchair services did the Thomashilfen Jazz Easys so i printed off the brochure and took it to the appointment with me.
WS generally dont advertise that they do it as it is so expensive but if you know they do ask for one you should get it.

that being said i managed to break ours after about 6 months, it has a lot of plastic parts on it (adjustment handles etc) and the part that attaches to the runner to make it tilt in space broke in two.

it does look fab and we got asked a lot where we got it when we were out and about (not just by people with SN children either!)

after it broke so easily i didnt want another so we went for an Ormesa Bug which we had for a year before getting a wheelchair, we have a sunrise medical quickie zippie ts.

the bug is much sturdier and doesnt look too bad but both are VERY heavy and take up a lot of boot space.

hi midorimum.where do you live?
did your child need something very suppoertive or did you just choose the jazz easys?
i needs to be armed with this info before i go, otherwise they will convince me to have a maaclaren which is ok but i think it has its limitations.

im in scotland, and the WS here is called Westmarc, the jazz easys has lots of adaptions so would suit children who need a lot of support as well as those who need very little, my son has poor head control and cant sit unsupported but another mum at DS nursery has one and her boy sits very well.

make sure you phone tendercare as they will tell you if your local WS uses the jazz, i knew ours did but when i went to ds appointment they showed me 3 brochures for other buggys and when i asked about the jazz they were like "oh i dont think we have that one" so i whipped out the brochure i'd printed off and told them i had spoke to the supplier and knew they did it, got it no probs

thanks midorimum

i called tendercare and they confirmed that all uk wheechair services can order this.
and it takes oxygen cylinders and i am sure i could put a buggy board on. they are sending me the info. i dont expect it to go that easily but with both childrens problems i am sure i have enough of a case. otherwise i will be selling the mountain buggy, and the stokke and anything else i can land my hands on.

they also make a less complicated model but although its cheaper. i cant get o2 on it easily but maybe its possible??

if i really want one of these can i demand it or do i have to take the options they offer me?