Q for parents of children with Hypermobility

[WillowB]

GP referred us to paediatrician due to delays with DS walking & concerns around mobility. DS was diagnosed with Hypermobility and low muscle tone by the physio in Dec. We have now been discharged from the paed today after only 2 appointments (will still be having physio)
Is this to be expected? I thought they might try & get to the bottom of the cause of his hypermobility but the paed just shrugged & said that because he has no other delays it's just one of those things. I'm not sure if I should have queried this

I am not sure they can always find the cause, it can be hereditary, it's good you're getting the physio, keep on top of that! Physio can refer to orthopaedics if necessary etc. you don't say how severe?

The physio is the person best placed to give the most help with improving tone and supporting joints. They can also refer on if orthotics etc are needed. If pain becomes a persistent problem as your DS gets older, then your physio, again, can advise on ways of reducing this (DS2 likes a foot rub) and your GP can advise on pain relief, which tends to be little more than paracetamol/ibuprofen in little ones, on a rescue basis, anyhow.

Hypermobility is usually hereditary - both my boys inherited it from me and I appear to have inherited it from my dad.

The most important thing is the physio as poster said above. From what I understand, most hypermobility and low muscle tone has a benign cause and it is a case of strengthening and supporting joints and muscles as children grow.

My DD has had physio since birth due to low muscle tone/hypermobility and her muscles have strengthened up significantly. We've done a lot of strengthening exercises and swimming is also good. My DD walked unaided at 21 months old and some days she's still a bit unsteady on her feet and cautious with physical activities compared to her friends.

If no other delays, I probably wouldn't query it - if it transpires in time that your ds actually does have other issues, you can be re-referred. Until then, a paediatrician isn't going to be of any help to you, since whatever the cause, you're highly unlikely to get anything other than physiotherapy out of it at this point in time.

Thanks for the advice. DS is hypermobile in most of his joints from what the physio has said. I'm also hypermobile however my brother has Dyspraxia and was very delayed in terms of motor skills.
I guess there isn't much the paediatrician can add. I'd read that hypermobility/low tone can be associated with ASD but he doesn't seem to have any of the other characteristics other than a few sensory quirks that the physio is helping with.
I guess I'll just keep an eye on things as he gets older.

Yep. Dd2 saw paeds twice, physio twice and then we've been left to get on with it. Which means regular doses of painkillers when she has bad nights and resting the following day. Her walk is awful but as she's only nearly 2 they've said they won't worry too much until she starts school as she's plenty of time to strengthen herself before then. But she's soooo clumsy. I've just had to buy new shoes and as they've got their summer ranges in, I've not been able to get the little boots like I got (and were recommended by physio) last time.

minisoks did they not refer you to orthotics? DS's feet roll in due to the flexibility in his ankles. Physio has referred us to Orthotics who are going to fit him with some supportive (piedro?)boots to stabilise his ankles. He isn't walking yet though.

No willows they didn't. Unfortunately I think she was only just walking the second time we saw anyone so they've put it down to learning. Although a few months on and IMO she's no better. HV came out this week to do dts 22 month check and has agreed she walks funny so is putting in a referral for her. They've said it could even out but is worth investigating. She walked to school and back on Monday. Then went straight to sleep when we got home for 3 hours.