Hypermobility

[Lishiamortishia]

Hello
Would love to hear from anyone who has had experience of hypermobility. HV suspects dd 22mths is hypermobile and gp has just agreed to refer to paediatrician. DD is a bumshuffler and has only just begun to pull herself up and weight bear on her feet. She stands with help holding onto an adults hand and will walk (in a rather goose steppy type fashion) for a little while before she wants to stop. She often complains her legs and feet hurt. I understand that its going to take about 18wks for a referal to a paediatrician which makes my heart sink a little. DD is bright and is definitely aware the she 'walks' differently to her friends and peers. She gets very upset if she can't keep up and playmates run away to play elsewhere. At nursery, it always seems like she's playing on her own whilst the other children all run around. I obviously have my own anxiety issues to deal with but as her mum I can't help but worry and want everything to be okay for her. I hate seeing her upset. The other day a little girl innocently asked 'Can't she walk yet' and my dd got very upset. She grabbed my hands, asked to 'walk' and then shouted 'Look, walking!' Whenever we go to play centres I see others giggle and point and I just hope my dd doesn't become aware of this. I am beginning to feel anxious about going to group activites in case my dd gets upset.
I feel like I have let her down a bit by not pursuing my concerns before now. I did take her to the gp about this at 15mths but at the time he wasn't able to say either way even though her posture and sitting position (almost splits!) were very different to other babies of the same age.
Is there anything I could/should be doing in the meantime before the appointment comes through? I 'walk' with her all the time to help build her muscle strength but not sure what else I can do in a practical way.
Would appreciate any advice/help or just contact with parents who have had experience of this as feel anxious for the future and a bit sad for my daughter.
Kind regards,

Liss

My DS aged 5 was diagnosed with hypermobility and low muscle tone about two years ago - his main symptom at the time was falling over a lot. Since he's got older it's become obvious he struggles with fine motor skills - doing up buttons, holding a pencil firmly enough to write properly etc. We were given exercises to try and they suggested swimming.

Hi didldidi
Thanks for your post. I take it your DS wasn't slow to walk then? Have the exercises/swimming helped? Have you been told he will eventually 'grow out' of it?

My DS bum shuffled and walked at 29 months. We had him checked by a developmental paed who said if he wasn't walking by 30 months he'd be referred (for what?). Anyway, he pretty much got up and ran and has never had any problems. He wasn't confident about participating in team sports for a long time but now, aged 9, is very confident and quite good.

Keep encouraging your DD to walk and as long as there are no problems she will do so eventually. Bum-shufflers are always late to walk. If you are really concerned try and get her seen by an OT. They can do lots of strengthening exercises which hypermobile children need.

My dd is hypermobile, and started walking at 18 months. Before this we saw a physio, might be worth asking as might be quicker than a paed? Dd has also been wearing exciting boots which the physiology recommended.

Ecco not exciting!

Been unsure about answering this as ours is a kind of worst case scenario. Both dd and ds have hypermobility syndrome. Dd walked at 19 months, ds at around 14 months.

Dd always had problems, ds seemed fine until he was about 8 and then starting getting a lot of pain. We have worked with swimming, physio, OT etc and we do believe it has helped, but there is no way of getting round it: for them, it amounts to a disability. Dd has spent long stretches in a wheelchair and they both regularly have time off school due to chronic pain. Dd is now 14 and ds nearly 11. I don't know if they will grow out of it or not.

But please remember that lots of children really do grow out of it.

I have a very mild case myself: it hurts me to hold a pen, and I do walk a bit funny, but I used to work as an archaeologist and do mountain walking, so it certainly hasn't held me back in life.

Thank you ilovemountains, castlesintheair and cory for your responses. Seems to be a bit of a mixed bag and I guess will just have to hope that as a bumshuffler she is just being slow or that with some physio she will be up and about. Whatever the case, I feel better hearing from you all so thank you so much.
Cory, thank you for your honesty and frankness and I am so sorry that your children experience such pain, it must be so hard. I really hope that at the very least the pain becomes manageable for them in the future.
Thank you all again and I wish you and your families the very best for the future.

Hi. DD1 has hypermobility, and is considered a 9 on the Beighton Scale, so VERY bendy. She didn't really start to walk until around 16-17 months and was very unsteady. She bent inwards really badly at her ankles, and I was very aware of how she just couldn't keep up with the other toddlers.
My GP was great, and got us referred to our nearest Child Development Centre, (they are all around the country - check on Google).
She saw specialist physios who ONLY deal with children, and was fitted out with shaped insoles, which corrected her feet, - she wore these until she was 3.
We were given a lot of guidance by the physios, basicly, the main aim was to get her as strong as possible, so perhaps you could try the following;
Encourage her to climb stairs, (under supervision, of course! Build "assault" courses with cushions, and get her scrambling. When possible, put interesting things slightly out of her reach, so she has to reach up to get them (stretching the ankles, calves and arches).
Practise walking when you can - (she sounds keen!), but try to avoid holding her arms above her head. Doing that pulls the pelvis out of alignment, and prevents a proper foot strike. It's much better to encourage her to support herself without raising her arms up.DD used to walk around holding one end of a folding umbrella, while I held the other end!

Try letting her walk around pushing the buggy when you go out.
Get some reins, so you can limit falls when she's walking.
It's also important to develop hand strength, so lots of sand play, dough-squeezing etc is helpful.

Finally, I would just like to reassure you that this is really quite a common condition, and is the main cause for late walking, - you're certainly not alone.
DD1 is 7 now, and really has no physical problems, other than being a rather ungainly runner! We were warned that she might struggle with writing/pen-control - in fact, she is extremely good. We were told she might tire easily, - she is a ball of energy, can walk for miles, and regularly swims 10 lengths+ with ease. We were warned to avoid ballet and gymnastics, as these would encourage her to over-stretch.

Yes, some children can be badly affected, and I'm not a complete ostrich, I know that her condition could change, but as she has clearly inherited this from me,(it always runs in families - I was never diagnosed as a child), and I have reached the grand age of 45 with no problems, I'm hoping for the best!

my DD now 3 is also hypermobile in her ankles, knees & hips

She walked at 22mths.

Would 2nd what others have said about getting physio, we were given lots of exercises to build up the muscles in her legs (lots of squatting to pick things up off the floor etc)

Also when she did start walking we had to get ankle boots type shoes to give her more support iyswim. Were told to avoid croc type shoes at all costs due to lack of support.

Sh does not fall over as much now but when she runs you can see her legs are very bendy and her muscles are working harder if that makes sense. She is definately not as nimble on her feet as other kids the same age as her, and for a long time I had to shadow her in the park playground on climbing frames etc.

In the end she had 6mths of physio (walking up and down stairs was another exercise I remember) before being discharged.

The thing I notice now is that she cannot manage a scooter or climb onto a toilet which her friends can do. But hopfully she will get there in her own time.

I have also been told to avoid gymnastics classes till she is at least 5 incase she over stretches iyswim.

I remember once at a friends BBQ she fell down the steps (she was 2 at the time) in their garden on their decking (she was unhurt) but I felt sick when I saw the angle she had got one leg in and thought she had broken it, but she got up and was fine

We also got DD one of these as soon ), as she was tall enough;
www.itsimagical.hk/vehiculos/detalle?referencia=44625

It was the best £40.00 I ever spent on Ebay, - she could rest her feet when the pedals were locked, or 'pedal', (have her feet taken around), and as there were foot-straps, they didn't slip off. I reckon this really helped to build up her strength, and she was the first one of her friends to be able to pedal a proper bike!

My ds 8 is hypermobile and scores 9 on te beighton sacle, so another extreme one.

He didn't walk until 26 months, never crawled and still can't. He bum shuffled everywhere. We were diagnosed when he was 6 and having extreme pain in his spine, nobody woulld take us seriously before then as he was born with Hydrocephalus so everything was down to that .

He has bouts of severe pain and i use a cold gel called biofreeze on him. He also sleeps on an adults orthopeadic mattress, (this has been a godsend). He also has specific cutlery that gives him so much independence he can actually cut his own food for the first time in his life. We use these page 17 of the brochure. We don't mind if he uses his hands to eat with, which he regularly does.

One thing i know my ds couldn't ccope without is boots to wear, even his trainers are boot style. That has minimsed the pain dramaticailly since he only wears boots.

We were given alot of physio to do wqith him to help with HMS and poor muscle tone but unfortunatley we are unable to do it wihth him as he has other SPLD and they contradict the exercises IYKWIM. .

They best thing for you to do is too stop worrying about other peopl and enjoy your DD, who cares what other people think, if they want to be narrow minded and judgey about you then let them. The only important one in all this is your DD. I tell my Ds there is lots of things other children do but you can't but there is also alot a bendy boy can do that other children can't and thats a unique talent! Just backed up with just don't ever show them what you can do!

It is the caring cutlery we use, you might need the ones above for your DD

Hi my dd has this in most joints along with low muscle tone in her trunk. Both these things delayed her walking - she was 20 months when she got going and has taken a while to become steady. It is most noticeable now she is 3 when she runs as she has a wide base and locks her legs for stability.

Physio exercises and OT have been helpful as are swimming, trampolining (in moderation) and lots of general exercise - climbing, walking etc. It all helps to strengthen the joints. I have it myself and was very good at gym and ballet as a child - apparently lots of top athletes/gymnasts have a degree of hypermobility!

I'm hypermobile - I think I had Pieddro (not sure about spelling, sorry) boots as a child to help, but that might also have been because I was born with problems with my feet (I was a bit of a problematic child!). I wanted to post to let you know that now at 30 it doesn't cause
me any problems other than (perfectly manageable) shoulder pain.

DS2 has hypermobility, also 9 on Brighton scale.(being tested for Ehlers-Danloss as DD also has hypermobility, as do I, and my brother, and my Mum, and my uncle).

He has Piedro boots from the OT. We do daily exercises with him, which have changed as he has got older. He took his first unaided steps at the age of 3yrs 6months. Yet to look at him now, running around - you'd not realise that until it came to doing finer physical movements. He is 7yrs 4months, and has just started being able to pedal a trike. He can't hop yet (these are the two things his physio is focussing on atm). He also has problems with his joints subluxing (dislocating) frequently. He can't walk far as it hurts him, actually causes him physical pain to walk long distances. He still has problems holding a pencil, as his thumbs sublux, so his writing ability is at a 5yo's level.

Swimming is good for him as he can exercise his muscles without them taking as much strain IYSWIM. I spent bloody hours a lot of time when he was little with his feet stood on top of my feet, holding his hands, and literally 'walking' with him on top of my feet, to try to get his muscles 'used to' the action they have to perform when walking. Also I got these silicone 'ball' things for him to squeeze in his hands to strengthen his hand muscles from an independant living shop. Also sqeezing playdough through his fingers. Lots of time in the park on climbing frames/ monkey bars*/ swings - you'd be surprised how much keeping yourself upright on a swing will strengthen your 'core' muscles. To start with I'd sit on the 'big' swing with him on my lap and swing with him, the he'd be on there on his own with me doing tiny little pushes. Now DS2 spends a lot of time on the swings.

• Be careful on monkey bars if you have a hypermobile dc whose shoulders are prone to subluxing, don't let go of them on the monkey bars until their shoulder musles can FULLY support their weight at about 6/6.5yrs with bad hypermobility. Also visit the Hypermobility Syndrome Association website for more tips, they have been a godsend for me!