Hypermobility worsening - Update

[ChopsTheDuck]

Went to the GP today and didn't go particularly well. Now I know why I usually stick to the paed! She thought basically I was expecting too much from him with the HMS and he needs to cut down on activity more, and maybe he has a kind of viral hip infection worsenign things. Have looked up that and I doubt it personally, seems more likely that it is inflamed due to HMS since he has no fever or anything. She didn't think an orthopedic referal would help. He has to take nurofen 3 x day for a week then go back.

I'm jsut not sure what to do next. I've already cut back on his exercise a lot, and it's really beginning to affect us all as a family. If a 30 min walk is excessive (as the GP stated) are we supposed to stick him in a wheelchair next? I'm driving nearly all the time as it is now, and it's not very fair on the other 3 kids. Even he finds it hard, because he does want to be active.

Luckily jsut this morning the latest OT appointment came through so I can discuss thigns with them next friday. I really feel at the moment though that he is just being shrugged off.

Hi Chops, sorry it didn't go well. Could you maybe try and get him referred through the paed? Also lets hope the OT can help.

Alfie has hypermobility, has to wear boots now but is still getting the leg cramps. Strangely the OT rang me today to arrange an appointment. Like you, I hope she can help.

Good luck

Hi, sorry to hear that your ds is having a rough time.

What I have found is that HMS is very unpredictable.

Dd would certainly struggle to walk for 30 mins most of the time, but there are times when she can. Usually we just have to plan any outing around what she can do and take a wheelchair for back-up.

She was much better at Easter, but overdid it on a day out in the holidays and ended up with bursitis in both knees; still not walking without crutches. Could this be your ds's problem? No fever but swelling and bruising for no obvious reason.

We find it very restricting on the whole family (particularly as I can't drive).

If he does end up needing to use a wheelchair- try not to think of it as sticking him in the chair. It doesn't mean he can never get out of it or that it defines him. Or that things will always be this bad.

Alfiemama thank you and I really hope you get to the bottom of the cramps. If it is muscular It doesn't sound HMS related to me and needs more investigation.ds has joint pain rather than muscle cramps.

Cory, ds prob has overdone it. We've been trying to teach him to ride a bike (with stabilisers) I did wonder if something like a a stick or crutches would help but with dyspraxia I don't think he could do it.

Tbh I think w wheelchair woukld make all our lives much happier and easier but I kinda feel like I shouldn't and that I'm doing it to make my life easier and not for his benefit. I also think the gp will just add it onto her list of evidence of neurotic mother as no one has said specifically that he needs a chair!!

opting for a wheelchair will label you as a neurotic mum, no doubt about it

it's a question of whether you feel it would add to the quality of your ds's life- or to that of the rest of the family

all dd's doctors were strongly against it because they felt it would single her out; it took a chiropractor to point out that carrying her to school on my back, as I sometimes had to do when her legs gave, was a far more effective way of singling her out

What I've been longing to say to the doctors for years is:

suppose there are two children in a class who find it difficult to walk

the school goes on a trip to the zoo which involves several hours of walking, something which neither child can do

one child goes on the trip taking his wheelchair as back-up for when he gets tired

the other child stays at home and when asked about it afterwards mutters that he hates giraffes

now which of these children would you say is disabled?

Disability to me is not whether you use aids or not, but whether you can take part.

The only real danger to consider is that muscles will waste away from lack of use. But owning a wheelchair doesn't mean he will have to be strapped into it or use it every day. They make excellent clothes horses

crutches more dodgy ime as they can lead to overstrain on other joints

We got round the doctor's unwillingness by buying our own wheelchair nfrom a mobility shop.

Hi Chops, children with things like this do seem to get shrugged off by the doctors. My dd's 6 and has hypermobility as part of Marfan syndrome. She has had various insoles and boots to try to prop her up, but walking is getting harder for her as she gets older.

We did opt for the wheelchair on the advice of a physio, and although she doesn't have to use it all the time it is better than having to carry dd when her joints ache and pop, or if she gets tired. I had my reservations about dd using a chair but it has made things easier for her and me. She will also now try to walk a bit further when she isn't so sore because she knows that she can sit down when she's had enough. I wouldn't trust my dd on crutches, she'd be a danger to herself and everyone else!

I suppose it depends on the personality of the child.

All the doctors seemed to know my dd better than I did and were adamant that if she was once allowed to sit in a wheelchair she would never get out of it again. This simply hasn't happened.

Dd uses the chair as and when she needs it, but its most important function is to give her the confidence to go into school, to go on the residential school trip, to come with us onto the moors- because she knows that there is backup should she need it. It helps her to be more active.

But some doctors seem to have a very punitive approach to children's disorder, seeing it as their main function to make sure they're not enjoying a minute of it.

Thanks for the replies. At least now I feel less neurotic about considering it even if I am going to look it!

The more I think about it the more I really do think he needs it. They have a school trip next week and its a 1 mile walk there. He can't do that. I've just bought them all legoland passes but even with an exit pass he isn't going to be able to walk around all day.

I don't think he would overuse it. He loves running and wants to be active, but when he can't walk, he just can't!

yep i view my ds chair as enabling him to do things , that without would effect him more

Quite the school have jsut told me to keep him home because he can't walk for the trip. I thought they would probably expect me to drive him, but they said keep him off. So much for inclusivity!
Made me wonder though, if he had a wheelchair he could have gone, but who would push it?

If he had a wheelchair the teacher or a helping adult or another child would have to push it. There is no way they could legally keep him off if you could show that he is equipped to go. The law (Disability Discrimination Act) says they have to make reasonable adjustment to ensure that he has access to the same experiences as his peers. Pushing a wheelchair is reasonable adjustment. But you could argue that risking to get stuck with him or having to carry him if his hips give is not reasonable adjustment, as that might involve a risk to the teacher or that the trip couldn't be carried through.

Right I see,
thank you for explaining!

Is it just the problem of getting there, or are they worried about him getting around? Ime trips to the zoo involve an awful lot of walking once you are actually on the premises.

this one is jsut an issue of getting there - they are visiting a church. There is one later this term to Birdworld, which is going to involve more walking. Not sure what I am going to do about that, I really do need to save up for a wheelchair.

I don't know of any mobility shops local here, will have to have a hunt. I've been looking online and the cheapest reasonable looking one is about £300, but I think we need to go somewhere and get proper advice really.

When we go out as a family we tend to make sure he has lots of mini breaks to make sure he can keep going. The rest stops seem to really help a lot. I keep my eyes peeled for chairs or walls where he can sit for a few mins whenever we stop! If his legs do give out we have to call it a day. School aren't likely to be able to do that!

£300? Ouch... Are there any on Ebay?

We got ours through Wheelchair Services, we were referred there by dd's physio. In our area, they accept referrals from any healthcare professional. Dd does have problems with her heart as well as hypermobility, and I don't know if this is what made the difference to whether she got a wheelchair or not. A friend's ds has hypermobility and is waiting for an appointment with Wheelchair Services where they live, and there is an 18 month wait

We've done the struggling along to the next bench/low wall and it isn't easy.

The Red Cross may be able to lend you one: they did for us.

Try looking for a major buggy? Or would that be too small?

no 2nd hand on ebay cheap. Really don't know why paedriatric chairs are so much more expensive that adult ones!

I'm not sure if he would fit in a major, or if he would want to sit in it tbh! He is very tall for his age, so probably not an option. He's about the size of an 8 year old.

red cross is a good idea, I've had a look on their site and they look promising. I read that they only loan for 6 weeks, so I might try to get one for the summer holidays. Then hopefully I could afford to buy one.

This week we've stopped all exercise (cept one swimming lesson) and he has been so much happier! I don't think he always lets on how much discomfort he has, and he just carries on until his legs give out. He is far less moody this week, and he hasn't had any meltdowns, and is more alert (often off in his own little world). I can't believe the difference and I'm so pleased!