Hypermobility

[LavernAngela]

Hello, I am looking for some advice, my 3 year old son has got joint hypermobility, he’s in pain every night to the point he is in tears with it, he’s on calpol regularly but it’s not having a huge affect on his pain,. The doctor said to get him to sit still for half an hour every few hours but he is 3 and very active, does anyone know what I can do to help him?

[Pinky2233]

Have you heard of

Ehlers Danlos Syndrome?

Are you in the states?

There are wonderful people who treat this is Maryland in the US.

Here is a bit about the syndrome.

When you pull on his skin can you pull it a few inches? Elasticity of the skin is one sign of the syndrome.

Just wanted to share if it can help him

Keep me posted

google.com/search?q=ehlers+...

[LavernAngela in reply to Pinky2233]

No Leicestershire uk, and been told he hasn’t got that, but he’s on the higher end of HM

[Pinky2233 in reply to LavernAngela]

I’m not an expert but have had my own issues. Strength building could help stabilization. He’s young but if you could figure if there are specific joints causing pain, perhaps strength if those joints specifically with pT might help.

[LavernAngela]

It’s mainly his hips, legs and feet that cause him more pain than anything else,. I massage his legs when he goes to bed but he’s been saying that hurts now too

[Candy2595 in reply to LavernAngela]

Hello I’m a fellow broken one, from the uk, where you from? I’m in Kent.

have you tried hot water bottles, heat pads, even cold (personally this makes me spasm lots, but works well for others), placing pillows between his legs or a rolled up sheet, keeps the legs straight and hips aligned.

Do you know where the pain is? Or does he tell you what hurts?

Also if the pain is muscle, it may be worth trying ibuprofen instead of paracetamol, as it’s an anti inflammatory which may help him more, or alternating the two? Might be worth a go.

Have you had any involvement with occupational therapy? They can help with all different things, like sleep systems, mattresses, every day tools.

You may also need to pace him a bit throughout the day, which is harder than it sounds, but just have some calm moments and have a wind down in the evening; bath pjs, get him relaxed, so it doesn’t become stressful, massage straight after his bath and he’s in bed - this can be really good, relaxes the muscles and the mind, try and keep him warm not hot, this makes a huge difference to our bodies.

Unfortunately nights are my ultimate worst times too, power naps throughout the day (on a day off work - I don’t think I could get away with it, but I might try Haha) work well for me, as for that 1-2hours, I don’t feel much pain and can just sleep, well pretty much pass out!! But any longer, I’m in spasm and dislocating all over the place!!

Don’t let anyone tell you, this isn’t fun!! Haha

There’s also the HMSA website, I don’t have kids, but I’ve seen the journals they send out and they regularly do loads of stuff on kids and adapted accessories available (if needed).

Might be worth a look on there, I’m just telling you my point of view and what works for me, I love my bed, but my body doesn’t, so me and my bed are having a sordid affair, without my body knowing hahaha. I hope some of this helps,

I’m sure you’re at a point of wanting to try anything, poor lil mite xxx

[cyberbarn]

This what how my son was. He used to tell me at age 3 (I kept a diary so this isn't from memory!) that his legs weren't old enough to walk! He was very active, moving all the time, so we tried to get things for him to do that didn't always involve walking. We ended up with three climbing frames in the garden!

We also did pacing, so I would try to alter a busy day with a 'do nothing' day. At three it is so hard to tell, but it ended up that my son was on the autism spectrum and a busy day, (anything that was noisy) was over stimulating his brain and that was also what was making him hyper. When he was four he threw all my car keys in the bin and because it was a French car it took a month to get new keys from the factory. We live in a tiny rural village with no shops or amenities so it was a very quiet month! No playgroup, shopping, coffee mornings...

At the end he was a different boy, quieter, more relaxed, and nicer to be with!

And I wouldn't discount EDS just yet. Here in the UK there are a group of health care professionals that think that if they don't diagnose EDS in young children they won't grow up with it. But that just isn't true. If he is at the high end of hypermobility that will be causing problems. There are other signs of EDS too through, it isn't just about hypermobility and some of those could also be causing problems that they can't express.

Have you seen the RCGP EDS toolkit? Have a look at it, as well as the EDS UK website. See if there are other people in the family that might have it.

rcgp.org.uk/clinical-and-re...

And hang in there, it will, well, not necessarily get better but the picture will change. My son is now 22, but at age 12 he went from being hyperactive to having fatigue. That was when we finally got the formal diagnoses of EDS. Although it is sad that he wasn't able to go to university like he wanted to because of the fatigue, at least he stays in the same place and I don't have to go hunting for him when he runs off!