Hypermobility Syndrome - Anyone with any experience?

[hockeypuck]

DS has just been diagnosed with hypermobility syndrome, particularly affecting his lower limbs. Thankfully we have a pro-active HV who referred him early for physio and he has started already. He is 15 months and doesn't try and pull himself up or cruise yet. When held in a standing position he isn't very happy, he gets a bit scared and tries to sit down. I think this is because he is very wobbly. He also has a fear of falling over and cries if he sees DD (4) falling over and also cries when someone on TV falls over (particularly you've been framed!).

I understand that children who have this often benefit from shoes/boots before they can walk to give them some grip and to gie their ankles some stability. So I took him to a good independent shoe shop to be fitted but they say he is only a C fitting and it is very very hard to get shoes in that fitting. Does anyone have any experience of hospital made shoes?

Also, generally does anyone else have a child with this hypermobility? What age did they walk and is there anything else I can do to encourage him in moving? He doesn't crawl but speed bottom shuffles around the place!

TIA

Hi honeypuck

DT2(3.5) has hypermobility, low muscle tone and GDD.

He has been fitted with Piedro boots - currently on 2nd pair. I have seen a difference in him wearing them but when he is really tired he falls about much more and is more floppy.

He was much slower at reaching his milestones compared to hisa twin, started walking around 26-28 months sitting around 20-21 months.

We give him loads of encouragent too to help him reach his goals

Hope this helps a bit

Jam
x

Thanks Jambuttie. What are piedro boots? and what is GDD? I am really new to these things with DD having reached all her milestones quite quickly.

My son is very hypermobile in all his joints and also has low muscle tone. He sat up fine at 7 months, but didn't roll over, bottom shuffle, crawl or walk until after we'd started physiotherapy at 15 months. He walked at 21 months, which was pretty good going, considering where he started out! It entailed hours worth of practice on his part every day and he did have piedro boots (the "hospital" boots that your NHS physio can get for you)until he was walking reasonably steadily. They definitely helped, as he had very flat feet and pronating ankles. The boots help support the ankles and feet until the muscles have strengthened up enough to support the loose ligaments around the joints. Our physio was then of the opinion that he should stop wearing them, as the theory is that if you continue to wear them, your ankles and feet don't have a chance to fully strengthen up on their own, resulting in you always needing them to support your feet and ankles. However, some children do need to go back into them later on, if the hypermobility is a continuing problem, as severely pronating ankles and very flat feet can put enough strain on the joints of the body over time to damage them and cause pain and athritis.

My son is now nearly 3 and a half and is quite happy to walk and run on unsteady ground in normal shoes or bare feet. He is still alarmingly hypermobile (particularly noticeable in his fingers and elbows). He doesn't seem to suffer any pain from it, though. He is still behind other children physically - he can't run very fast, he can't jump very high and definitely doesn't have enough strength or stability to hop, yet. But he is clearly getting better at all these things quite rapidly and enjoys physical activity.

I'm told that swimming is very good for children who are hypermobile and/or hypotonic, as it strengthens all muscle groups, so increasing joint stability, without putting much strain on the loose joints. The main thing, generally, is to keep your child active.

I hope some of this helps!

ps piedro boots actually look like normal boots - or even trendy DMs. They come in different colours and styles and provide varying degrees of support, depending on what is needed. I rather miss having them, as lots of people asked me where I'd got them, because they'd love boots like that for their child!

Agree with everything hels has said - dd2 (now 5) is hypermobile and needed Piedro boots/orthotic insoles to stop her walking on sides / tops of her feet but we stopped then at 31/2 on advice from physio. Reasoning was that they can push the problem of balance further up the skeleton if worn for too long. She didn't weight bear at all until2 and walked unaided at 2 1/2. Couldn't manage stairs without holding on until early this year, and still takes a tumble in the playground a lot, but not every day any longer. Most likely to lose balance if holding onto someone else's hand IME. Still can't skip, which makes her sad, otherwise fine about it. Swimming is the best exercise for muscle tone without strain, but she has only started this year, as before that if you put her into water her legs would just float out sideways! She is predicted to reach 6'2" in height, so her hypermobility goes with her gene for height. They do catch up, but it will take your ds longer to master quite a lot of things!

Thanks so much for all your advice. Glad to know that they catch up eventually. Interesting callmemadam about the gene going with the one for height, as DH is 6' 5" so we assume DS will be tall.

Also, hels9 glad to know piedro boots are trendy

Will look into a new gym with a pool, my current one only lets me take in DS once a week but I think swimming is something we could enjoy together while DD is in school.

My 2yr old girl has hypermobility in her ankles only,accompanied by v mild hemiplegia.Her ankles look like they could snap.
She has splints,the children's clinic should refer you to Orthotics,
ans 'CROCS' clogs shoes are absolutely ideal to slip on them.She can't have piedro's AND splints, due to budget - even though it is so dificult to find other shoes to go over splints.
She loves her splints;they give her so much support and hence confidence.
I am really pleased I found this conversation string- I think it is quite rare?
Bronwen

Hi Hockeypuck,

My DD is hypermobile because she has Marfan Syndrome.

She didn't walk until way after she was 18 months old, and was (and still can be) very unsteady on her feet.

She was 4 in February, and has had Piedro boots from the hospital since around last Christmas. These support the ankles when worn, but we've been told that her feet will always be like this. She is already having quite severe pain in her knees, and her hips also roll inwards.

Top marks to the physio that's seen your DS and is trying to help! DD has only recently had a couple of physio sessions. My DD's feet were also around a C fitting in Clarks... another reason why we opted for the Piedro boots.

HTH x

I forgot to say, Callmemadam and Hockeypuck... try looking up Marfan Syndrome, as this is one of the genetic/height things. Just don't get overly stressed by the medical info, as it can be a bit

My husband has it, and stopped growing at 13 because he had a spinal op. He is 6'4".

My DD's predicted height is over 6' and could be as much as 6'6"

DS has Hypermobility and Dyspraxia

His Hypermobile joints that cause the most problems for him are his knees

He is 12 years old

But he can walk and run {although the running looks different to other children and is slower it is kind of with a slight limp}

he is very determined to try his best and never gives up on anything

DS physio and OT told us that swimming was good for him

So perhaps start doing that - although he is still a baby - he may enjoy splashing about

gosh I didn't realise other children had this (how dumb am I ) DS2 is hypermobile, has low muscle tone, ASD and is ludicrously tall - didn't realise the height and hypermobility went together

He's now 7 and has got much better in the last year or so - he suddenly worked out how to ride a bike, although he's still very clumsy and his sense of balance with other things (i.e. swings etc is not good). We do take him swimming, but again it's only been in the last few months that he's been able to do anything without exhausting himself

He's got another set of OT sessions coming up in the autumn and we're waiting on a physio assessment as his ankle rolling is now becoming somewhat alarming

My son is 3 and a half and just diagnosed. I took him to GP because he was clumsy, fell over more than normal and his foot turned and fell in. He has had on physio session, been given exercises, and is to see the orthodist next week. He is tall for his age and his dad is 6'8" so go figure!
Football is good I was told...for the knees and ankles anyway.

ya know what guys, i'm gobsmacked, my ds was diagnosed hypermobile about 2yrs ago, now aged 4, tbh it was just good to get a name on this thing that had been in our family for yrs lol, as far as i know my ds was 1st to be diagnosed, my nephew has since been diagnosed, but much of us have it, i know i do, but we would have been classed as double jointed at school. i cant believe how much help everyone got though, my ds got physio to keep an eye on him, but never actually got physiotherapy, and the most he has been given are insoles for his flat feet, shows what kind of a postcode lottery we live in aswell i guess, my ds is mostly his ankles aswell by the way. he starts school this time, he has extra support because of his clumsiness and learning difficulties, but on a day to day basis he is fine honeypuck, he's even learnt to peddle his trike this summer, so i wouldnt worry too much.