Hypermobility- any experiences?

[Balloonsandpirates]

Hi, my DD is just 4 and is very hypermobile (she’s level 9 on the Beighton scale). It is worst in her knees. She’s struggled a bit over the years learning to walk, etc, and definitely has her own running style, but largely has been doing relatively well. However over the past 4-6 weeks she almost seems to have gone backwards a little. She seems even more flexible and her legs seem a bit all over the place.

She’s relatively short for her age, but has definitely grown recently. It feels a bit like she’s catching up with her new longer legs a bit?!

I’m just wondering if ups and downs are normal with hypermobility? Does the colder weather ever increase the mobility? That might be a really stupid question

I don’t have any experience of it and can’t help but worry about her. She’s been reviewed by the rheumatologist and is being checked again in 2 months. Would be really interested in other parents experiences

No experience as a parent but personal experience! I'm in a lot of disability communities which are helpful for this kind of thing too.

I personally find that warmth improves my condition so I practice self care such as warm compresses, warming gel and hot baths. Other people with the condition report an improvement in cold weather so practice self care such as ice packs, cooling gel and cooler baths/showers. It's completely individual.

Hormonal changes also affect me dramatically. You'll probably find that as she gets older and enters puberty that she'll have more swings in development. Around my time of the month my body produces more of a hormone called relaxin which makes my ligaments looser and my hypermobility gets a lot worse and more painful. In pregnancy it's heightened further.

I also just notice that some days are simply better than others 🤷‍♀️some amount of activity/stretching helps me whereas some amount makes me worse, and I have to try and find a sweet spot.

It may be worth discussing options like joint supports as I've found these to be helpful at some points, but everything will just be trial and error as to what works for your little one and what doesn't.

I try to keep a diary (and often fail because I'm good at looking after everyone but myself😂) and record things like my diet, activities, weather, mood and pain level out of 10 and it can help to track patterns of what helps and what doesn't :)

Physio is key. DD suffers with leg aches she has poor ankle and knee control she wears basketball boots, her hands, fingers, elbows are very weak difficulty holding a pencil opening a jar unfortunately her knees are bending in she's 12.
Getting the right exercise to strengthen her body will help.
Does she have balance issues? DD is getting stronger with the home exercise sheets she gets from a physio group.
She is in physiotherapy 7 years.
It affects her confidence as her hand writing is very poor.

Thanks so much both, so helpful to hear from people who have more experience of it. I’ve been going a bit crazy trying to find things out but it’s so individual to different people and not much on kids with it.

She had physio when she was younger and has just been referred back to it, which I’m glad about.

The heat/cold thing is interesting, thank you for that.

She isn’t too bad with balance but is definitely more floppy and flexible atm. Can do the box splits, struggling to be comfortable on the sofa because she can’t hold herself up well, etc. She used to do things like that when she was a baby, but grew out of it, and is now suddenly doing it again and I can’t make any sense of it!