Hypermobility - diagnose at what age?

[Rhubar]

Does anyone know at what age you can diagnose hypermobility at? My DS is 5 and has been attending physio for weak joints. Although she says he meets the criteria for hypermobility, she says he's too young to diagnose and I was wondering if this is true? The team have a history of being unwilling to diagnose because then they will have to provide support!

Also his pencil grip is poor and although is it improving his hands are quite weak and he doesn't put much pressure on the pencil. Is this because of hypermobility? The physio says it isn't which I find hard to believe although I don't want to contradict her without being sure.

Thanks in advance for your help.

[proudmum74]

Hi, my DD was diagnosed with hypermobility in all joints at 3 months old, so not sure why your physio is quoting 5 as being too young, unless there are other issues complicating their diagnosis.

You may want to ask for a second opinion.

[soverytiredofthis]

DD was diagnosed at 17 months, we were in shock, just thought she was clumsy. We did initially receive great OT and PT but she now wears a lycra suit, insoles and helmet so we are pretty much on our own now!

Keep pushing as some professionals are so bogged down they forget they are looking at an actual child - (sorry if anyone offended but we have been left to it for almost 2 years without hardly an ounce of support!)

[Ineedmorepatience]

Dd3 wasnt diagnosed until 8 when an OT spotted it. She had been seen by 3 paediatricians prior to this and they had missed it. She is hypermobile in all her joints.

She had 3 months physio and orthotics in her shoes now we dont get anything and I buy her orthotics online because our HA wont provide the ones which work for her in adult sizes!

Good luck

[Rhubar]

Thanks everyone. It was actually the OT who referred us to the physio when I pointed out how weak his hands were.

When I think about how many times I said how clumsy he was to different people on the team but was just fobbed off as one of those things!

So would hypermobility affect his pencil grip and writing? His hand grip is very weak.

[Ineedmorepatience]

Yes it does make writing hard and tiring. Just staying upright is hard work for Dd3, she tends to lie across her table and is very floppy.

She uses a Stabillo pencil and pen at school but a pencil grip can do the same job. It has a soft grip and clearly defined spaces for her fingers and thumb.I feel she would benefit from a writing slope but she is reluctant to use one, I think because it stops her flopping across the table.

[Rhubar]

Yes, DS complains about being "too tired" but it only seems to be when he is doing something he doesn't want to do which makes me unsure whether to believe him or not! But it's particularly when he's doing handwriting. Even when he was younger he never drew pictures at home - he just wasn't interested.

Some days though he'll run and run and then other days complain that his knees hurt.

[auntevil]

OTs are reluctant to suggest hypermobility in young DCs unless there is significant problems caused by it - repeated dislocations etc.
A huge % of 5s and under are hypermobile naturally - but grow out of it.
Hypermobility could affect pencil grip, but there could be other causes, such as dyspraxia or DCD.
DS1 was an early dx of dyspraxia (3-4) and a late dx of hypermobile (9-10)
DS3 is already dx hypermobile at 5 - and is now being assessed for DCD - unlikely before he turns 6.
They are often linked

[Rhubar]

Thanks very much everyone, it's great to get everybody's views.

auntevil, thanks for that. I understand that young children are very flexible so didn't want to immediately contradict the physio when there could be some truth in it. Thanks for the info. DS is diagnosed privately with ASD and ADHD also but I'm still waiting for the state diagnosis.

[auntevil]

Just recently we as a family had the Beighton scale assessment. DS1, 2 and 3 all scored 8/9. They are 10, 7 and 5. I scored 8/9 too - and it was all the same one that we passed/failed (?) too. So with them, they were just genetically disposed to be hypermobile and it would have made no difference if he had of been 1 year or 5 years.

[Ineedmorepatience]

There are lots of people on here whose children have ASD and hypermobility. There is no official link as far as I know but Tony Attwood mentions lax joints alot in his books about Aspergers.

It is v interesting and yet another challenge for us to deal with

[cory]

Don't assume there is anything wrong with his veracity if he seems able to do things one minute and not the next. It is normal for hypermobility pain to fluctuate. Dd would go from using a wheelchair to dancing in her ballet show in a matter of days, or even hours. She is much more stable now that she has stopped growing.

[BeeMom]

My DCs were identified as being hypermobile as infant/toddlers, but like hypotonia, it was just another descriptive term - they weren't identified as having a hypermobility syndrome at that time.

As for ASD and hypermobility, I have seen it first hand, both in my DCs (although both are part of the larger picture for them - autism and hypermobility are symptoms of their disorder) but also in the DS of a friend who was VERY loose and hypermobile, and also has classic autism. I agree with cory, pain does tend to lessen and stability improves when they stop growing (or grow only very slowly).

[loverstryst]

Hello, I'm sorry to hijack this thread, but I wonder if someone knowledgeable could advise.

At 17 months a physio at a children's centre said DS was very hypermobile. He didn't walk till 18 months but is very active now, at 26 months. Although his hands do seem weak to me and he can't jump really at all, although he tries.

Recently I've noticed his wrists and shoulder blades pop/crack a lot. They don't seem to bother him, although he does pull at his hands sometimes.

I have hypermobility, diagnosed during pregnancy and my nephew has hypermobility syndrome; neither of us are prevented from doing anything, and we both very fit.

My question is: I want to get his 'popping' assessed. I realise he's probably fine and that they will say there's nothing wrong, he's not got pain etc...but I'd rather know if I'm doing anything wrong or if I can support him in ways that will help him longer-term, in case it does progress.

The HV said go to GP. But the GP batted me off just before his 2nd birthday.

Should I go back? Will they take me seriously?

Any advice really welcome.

[BeeMom]

Bee pops - a LOT, as do DS, DH and I. As a family, we sound like a creaky old house.

However, there really isn't anything that can be done about it. Aside from my 40 year old, heavily abused knees, None of my popping causes me any pain, and no one else in the family complains either. Generally, the popping sound is innocuous, but if it seems to be causing your DS any pain, I would suggest you try and talk to the GP again... this time emphasizing that it is painful for your DS.

With that in mind, aside from strengthening muscles to help to support the joint stability (the same as you would do for any hypermobility) there is not much you can do. Splinting can actually be counterproductive for some children as it doesn't encourage the use of the muscles to support the joint, and they can weaken.

[loverstryst]

Thanks very much BeeMom