took my second child to school in a wheelchair this morning

[cory]

thankfully big sister was off sick so the wheelchair was at home

otherwise I suppose I would have been where I was with her 4 years ago, staggering up the road with a tall heavy child on my back

this is about the age it started for her

and he knows that

how do you push two wheelchairs at the same time?

(I can't drive)

at least I now know I made the right decision when I asked the GP to refer him last week

but I don't feel up to going through all that again

Will someone uncork that bottle???

I know it's not massive, it's just the thought of the logistics. And they'll want him to give up playing football. And I had set my heart on having one healthy child.

Another slug and I'll be fine. Really. Have to meet him in half an hour, complete with wheelchair and cheerful grin.

we no longer see any doctors regularly with dd, morningsun: once the condition has been diagnosed and a pacing regime agreed on, there is not much more a doctor can do

It's Joint Hypermobility Syndrome (now thought to be the same as Ehlers Danlos III). At least I am assuming that that is what it is, as that is dd's diagnosis, the condition is known to be genetic and ds is showing the same symptoms. But we are still waiting for him to be seen. He has been seen at the orthopaedics department, but they can only deal with his ankles, and didn't want to say anything about the cause.

I don't really have any useful knowledge/experience of this sort of issue, all I can say is sorry that your DS's problems are becoming more obvious, and hope that he doesn't have to give up the football.

she sounds similar to dd2 in terms of use, which is why we're looking at the scooter option long term lol. although they did keep her in her chair all day once, much to her disgust, as they said she wasn't safe out of it that day...
sorry about eyesight - hadn't realised it wasn't a straightforward 'don't drive' will ds move up to the same school post yr 6?

are insoles sufficient if he is starting to have further issues? revisit orthotics whilst you are waiting for rheum referral? we are v lucky as our orth will chat through pros and cons... at least ask him about supportive football boots lol

two wheelchairs a huge psychological step - and actually at their (increasing) ages, you do probably need some sensible advice on maintaining independence... is there an EDS support group anywhere near you that might have members with older kids? i only know littlies and they are so much easier to chuck in a buggy or carry

sending virtual choc brownies and a punch bag.

(oh, lots of x posts lol - that's what happens when the doorbell rings mid-type!)

thank you, this is helping enormously, madwoman, in focussing my mind and seeing what I need to do next

supportive football boots a great idea- I'll look into those

dd is actually getting very good at independence so I think we will overcome it for ds too

it just sounds so odd when you try to explain the variability of her life to other people: on the one hand, she has transport and takes the wheelchair to school and is sometimes bedridden; on the other hand, before ds's foot started hurting, they were going into town on the bus on their own, with a mobile so they could call for assistance if she collapsed- so she is really quite independent if she is prepared to do that with only an 8yo for back-up

her school are very good about understanding that she is responsible for knowing what she can do and what she can't

she danced in a ballet performace two years ago just after she'd come out of hospital, knowing perfectly well that she might collapse on the stage- I told the ballet teacher to just kick her to one side as they might do with any dropped prop

(it's just the thought of the enormous courage required- and having to muster that for one more child)

I don't suppose the wheelchair will be forever, or for every day; but the unpredictability is scary for a young child

it's taking your life into your hands every time you step off the kerb or walk downstairs

lol - dd2 also does ballet. whilst i don't generally encourage the extremely lovely ballet teacher to kick her out of the way, they do ignore her if she crashes to the floor. she doesn't generally have such catastrophic consequences though, and is mostly able to drag herself back up again...

wondering aloud - is cycling an issue? has there been any research into comparing the knee and ankle joint stability for cycling v walking ? - just interested in the pros and cons of less weight-bearing against the different movement required?

dynamic lycra splinting?

i do think the kids are more robust (lol) than we are in coming up with coping mechanisms though - the best we can do is to provide some sort of safety net for the unpredictable bits... whether that's having two wheelchairs in the cupboard or not...

and bless dd and her phone. so grown up.

well, cycling is one thing that makes me feel more hopeful of ds than of dd (or at least feel his problems are different)

she never had the balance to learn to ride a bike, but he finally has, at the age of 8

otoh she has been able to learn to write and actually has quite nice handwriting (though she needs a laptop for long texts)

I think the next thing I need to do is to explain to ds a bit more of what was going on with dd's diagnosis, why things went wrong, why she has been damaged by it (massive panic attacks, many of which he has witnessed) and why that won't happen to him.

it is hard to get him to open up, but today on the way to school (wheelchair thankfully still available- dd will just have to prolong that chest infection lol), he did ask a few questions, which I felt was a good sign

really sorry to hear you are all going through this.

My ds1 has this, he's a bit younger than your two but pain is gradually becoming more of an issue. He also wants to play football but I daren't let him.

From the reading I've done the only real solution is to strengthen the muscles so they can cope with the extra flexibility without strain. I've heard that pilates is supposed to be really good for it, because it teaches proper positioning and not overstretching the joints - might be an idea for your dd especially. Mine has dyspraxia and asd type problems too, so not really an option for us!

It's horrible watching them collapsing in pain because a joint has buggered, I know exactly what you are going through.

IRRC you don't get dla, is it worth applying again? It'd be a bit of money maybe to cover the odd cab fare or whatever when he can't walk? ds1 gets mobility at the higher rate because of the pain, and the fact he cant walk far at all without it starting to kick in.

Both mine are doing ballet, which I think has a similar effect to pilates. Dd has grown a lot stronger in the last year or so: she has put on a bit of weight which didn't hurt: ds is still a scrawny thing.

We did get the paperwork together to apply for dla for dd last autumn, and then decided against it at the last moment, because she did seem to be getting a lot stronger and we didn't want her held back by the thoughts of how far we'd put in her notes that she could walk iyswim.

I think this was the right decision for us: I would have felt awkward letting her go into town on her own, if I was claiming for mobility. It's not like it's going to be every Saturday, but now and again she will be able to go, and then I want her to have the freedom. Of course, that's tough shit for the other days, when she still needs an awful lot of support and help. But I don't think the dla people are particularly good at understanding variable conditions.

Really consider trying again. You are supposed to put down what things are like on the very worst day. You could explain that to your dd, or even not show her the form!

ds1 only knows he has bendy joints atm, I know what you mean about not wanting them to start thinking negatively. Hence, he doesnt know he is registered disabled or has dyspraxia or social and communication difficulties.

It's good to ehar she has put on some weight. How did she manage it? ds1 is underweight and I keep trying to fatten him up a bit but it's jsut not working!

that does sound as though he's almost ready to do some 'finding out' himself. hopefully as time goes on they'll naturally help each other to work out different coping strategies too - i know that sounds a bit 'waltons' and unlikely, but it'll probably happen just through growing up with similar fears and coping attempts as much as anything else... and maybe help dd a bit if she sees someone else having to come to terms with the condition?

sending 'back on the treadmill' strength to you - hope dd perks up soon.

mm I do understand what you mean. I wonder sometimes when ds1 is having a good day and tearing down the road. The money pays for his swimmign lessons though, and all the extra petrol when he does need drivign because he can't walk, the clothes that get destroyed from constant falling over, his computer games because he can't always be active, etc. so I don't feel too guilty.

chops, the weight came with passing through puberty; she now has a fine woman's figure

about the dla- I think it's more that I would be nervous, if she suddenly started doing lots more than we had put down on the form; I am worried in case I would go all clucking over her and stop her from doing things

partly I think it's a fear of being "shopped" in case she is seen doing something I have said she struggles with

doesn't help that we have gone through 4 years of being suspected of all sorts of dodgy things in connection with her disability: from sexual abuse to deliberately encouraging her to truant. I just don't feel confident enough to put myself in a position where we might come under suspicion again.

Cory

I have no experience of this but will send you a virtual case of your favourite tipple. xxx

big hugs to you cory dont have nay wise words but will always listen and have lots of hugs to go round

Hi Cory,

It's been a while since I posted on here, and I'm sorry to hear about your son's problems. My dd's 6 and has got marfans. She has recently been given her first proper wheelchair. I haven't joined a hypermobility forum yet, but a friend keeps nagging me to do it.

Is there any way that one child could have an electric wheelchair? I've seen my dd try to self propel in her wheelchair, and it takes too much out of her to get anywhere, or for it to be practical. You shouldn't have to buy a wheelchair, we got ours from wheelchair services even though they know that dd isn't a full time wheelchair user.

As for DLA, I applied for my dd and she got it. I was honest, and said that her condition (and what she can manage) varied massively, so she is covered if anyone sees the "miracle moment" when dd gets up out of her wheelchair to walk a short distance with her friends... of course, the people that see that are rarely about to see her conk out again a few metres later. I know of someone that recently got DLA for their son with marfans/hypermobility symptoms but no firm diagnosis yet, so my advice would be to apply.

maybe I am being silly about dla

I think all those years of being doubted and disbelieved one way or another has made me over-cautious

Cory, I totally understand about the driving thing, I'm the same, and it's my sight that's my disability, so you're not alone there.

It's going to be a big thing for your DS, as you say, psychologically, but please, please, please, encourage him to ask for help when he needs it! Too many times I've soldiered on with print that's too small, or in a room where I can't read the board because of the sun, and instead I should've said, "Hey, I need help here!" but now, finally, at 19, I've come to realise that yeah, I can do most of what my friends can but I do have limits, like I don't go clubbing because of the lights.

He will come to realise that TRUE friends are the ones that come to you offering to push his wheelchair (maybe when they're a bit older though!)

You're gonna be fine, you seem so strong and willing to help him and your dd, I'm sure you'll overcome this

thanks for encouragement, lollipop

at least one worry is off my mind, as I have spoken to my parents and they were really supportive without saying anything that rubbed me up the wrong way. (not that they'd ever do that willingly, but it is so easy for things to come out wrong)

my Mum even offered to come and stay with me (from Sweden!), but I was able to reassure her that I don't think that will be necessary.

I need some sort of plan for Monday morning, though, assuming that dd will have recovered by then.

I am a little worried about his friends, too. They are still very young at this age. He was a bit upset this afternoon, as he'd been pushed by another boy, seemed to be about rivalry, but he did say "I don't think he likes me because I eat slowly" (so presumably cutting short valuable footie time)

I asked him if he'd explained to his friends about his problems and he said "yes, to the one person who hasn't got grey fluff for his brain but will actually stay and listen" (I tell you he wasn't in a good mood)- and then he mentioned a name I'd never heard, certainly not one of his close friends. SO I'm not so sure they will be there for him.

can someone point me towardsa hypermoblity forum,I suffer frim it abet only mildy now my eldest ds does to though not to bad.

But my youngest ds does suffer badly with it along with hpertonia and needs a wheelchair for anything other than short distances also wears pedro boots and looking at af splints to,we was lucky and the physio spotted t within secs then took one look at how i was sitting and said and how long you had it to.

Really feel for him, cory. He will find new friends, though.
ds1 lost quite a lot of his initial friends as his conditions became more apparent to them. Now he has some lovely friends who aren't bothered that he isn't the sportiest kid in the school and are a lot more tolerant and understanding when he can't keep up.

I also hope I didn't come off pressurising or nagging aboput the dla neither, some of my posts crossed with yours! It sounds like you have been through a hellish time before, and I don't blame you for being cautious.

Hopefully over the weekend maybe he will get some rest? Give his joints chance to recover a bit before monday.

for pheonix I think this is probably the best one. Their site is really good, and I have lurked on the forums, but never posted.

thank you ,not to ds had problems did i realise how bad it could affect this is despite forever dislcating my knees as ateenager and even on my honeymoon second day in mlol tht onewas 6 weeks in plaster