Baby with hypermobility

[HopAndEggRoll]

Hi, I have another thread about ds1 and the issues we face with him under my normal nn HugAndRoll. This thread is about my ds2.

He has always been quite floppy in the joints but we didn't really think anything of it. He's 11 months old on Sunday and still not weight bearing on his legs at all and we noticed his feet would be in very strange angles etc so he had a physiotherapy appointment today.

The physiotherapist checked him over and observed him and said he is hypermobile throughout his body, particularly shoulders, wrists, ankles and hips.

We were told he will more than likely walk but it would take a lot of extra work and time. She is seeing him again in 4 weeks, we have exercises to do at home, she is referring him to a paediatrian and will visit his nursery to demonstrate the exercises.

I was just wondering if anyone has experience of this and if you have any tips/advice etc.

[rabbitstew]

Yes, ds1 was like this. After huge amounts of work, he managed to walk from about 23 months. He is now 9 and joins in with everything his friends do. His hands tire more quickly than other children's, but he can play the piano and recorder and write reasonably neatly. His body tires more quickly than other children's too, but as I say, it doesn't stop him joining in. He tends to need to be taught how to do physical things, though, as it doesn't seem to come naturally to him! And he needed a lot of physiotherapy to build up strength. It's worth all the effort, though, because when much younger, it hugely affected his confidence and self esteem to be trapped in a physical world when he was not physically competent - everything was a threat to him. He is now a very happy, confident boy and a physically active boy, too.

[HopAndEggRoll]

Thank you for your response. Ds1 had low muscle tone so I know what you mean about confidence, he's still not level with his peers but is getting there.

We've done the physio/late walking etc but because its a different condition I'm trying to get my head around it. I'm worried it means he will need splints or something. Did/does your son need additional help such as special shoes, splints, wheelchair etc?

[seaweed74]

Hi. My dd1 wasn't diagnosed as hypermobile (and has hypotonia) until 23 months although she was never able to weight bear and her ankles bent in a very peculiar way! Dd had physio for 2 years (first appt at 2.2years). Initially she was just fitted with piedro boots, but this wasn't enough support. She could stand with hyper flexing of her knees and then would lock her hip joints.

At 2.6years dd got her splints. At 2.10 years dd became a walker (one week after birth of dd2)! Splints were cut down, then when she'd outgrown them she had a pair of daffos (similar to splints but smaller and bendier allowing more range of movement). Then at 3.8 years dd got Piedros and we stopped with any other support. At 4years dd had grown out of the Piedros so we bought some boot/shoes in a high street shop to try and she was great in them. Signed off physio at 4.2years. Dd wears "sensible" lacing shoes (very narrow feet) with an insert in them to support her foot position.

Dd can walk, run, manage 1/2 stairs by herself with railings (1 step without) and is improving all the time. Also dd used to be really clumsy with very poor balance, but this is also improving greatly.

Dd started at playgroup unable to walk at 2.3 years. She was walking by the time she left. She still managed to participate as fully as her other needs allowed in what went on there each morning. Dd was also a prolific knee walker and could get around at some speed!

Bit long! Sorry, but HTH .

[JoinTheDots]

My DD was diagnosed hypermobile at 15 months and after intense work with a physio was walking just before her second birthday. She needs supportive shoes (with a decent arch and an ankle support) but you can buy such shoe on the high street if you look.

She also tires more quickly and is everso bendy and likes to flop around or lay/lean on things if she can. We have been told she will likely be delayed with most physical development milestones like riding a bike etc but should get there if we teach her

We were also told she can have more physio if needed and it is likely preschool (which she starts in May) will request it

[auntevil]

All 3 of mine are hyper mobile, but not dx until much later.
Totally agree with late development in physical milestones. Just remember that this can be lots of the self care tasks as well.
BUT longer term, with support from physio and OT most tasks are learnt and doesn't affect academic development- although tiredness can affect motivation in all areas.

[HopAndEggRoll]

Thanks all this is all very helpful. Were your children referred to a paediatrician as ds2 has been but I'm not sure why.

[seaweed74]

My dd was initially diagnosed by the community paediatrician as this is whom gp referred us too when I complained about lack of weight bearing at 22 months.

[MissDuke]

Hi, my youngest child is 15 months was was dx with hypermobility and hypotonia by her physio a couple of months ago. She has been very delayed from the start, eg with holding her head up, etc. She rolled at 9 months, sat up and crawled at 13 months (nightmare, she would crawl off and sit up and then immediately fall over - because she was crawling, you couldn't keep pillows behind her!). She is only now this week sitting properly with her legs out in front. A very exciting development was she pulled herself up to stand yday :-D I was over the moon, and rang about 10 people to spread the news!!! The physio says we shouldn't expect her to walk before she is 2. Apparently this can be something children are just born with - my eldest dd also has it, but it doesn't affect her too badly, she also as aspergers). I also am hypermobile, but again it hasn't affected me as badly. The physio thiks in my dd's case it could be linked to something else, as she thinks she is also delayed in her comprehension of language, but I disagree - as does the paed! So we shall see what happens next x

[auntevil]

The thing with hypermobility is that it can be a condition in its own right and ultimately barely detected in later life in particular, or could be a condition that is linked with others.
For example there is research going on at the moment about some forms of hypermobility and the link with dyspraxia - which is what DS1 was first dx with by a paediatrician, 4 years before he was dx as hypermobile.
Your DS2 is still so very young, so the referral to the paediatrician could just be precautionary. He is however in the right place for if (big IF) there is anything further to be advised.

[blackeyedsusan]

link with dyspraxia? beginning to think dd is dyspraxic as well.

dd needs a wobble cushion, a pencil grip and possibly a writing slope in school too. also daily physio therapy

[HopAndEggRoll]

Ds1 has delayed language comprehension as well as the low muscle tone when he was younger, we thought he had dyspraxia and he's still under paed care and we're waiting for his salt appointment to come through which is why I have another thread for him.

We won't know for a while if hypermobility is ds2's only symptom so I guess that's why he's been referred so he's "in the system". Ds2 needs daily physio and our physiotherapist is going to visit his nursery to go through it with them.

[JoinTheDots]

My DD was referred to a Paed by the physio, she tested and said DD was globally delayed (at 15 months) but when tested again at 2 she had caught up (only just though - if the books say kids get something between 18 months and 2, she will get it on her second birthday, and not a day sooner!) I still see her as delayed in comparison to her peers, so I shall wait and see how she gets on at preschool, she will be starting this May.

[auntevil]

Hypermobility can be hereditary though - as with my 3DS - but it does not necessarily mean that any other concerns need to be the same. DS1 and DS3 have the same problems, but DS2 is completely different - with remarkably good fine motor skills. He was also early to walk .
Problem is, you need to be old enough to have severely missed developmental milestones for it to be significant enough for any dx.

[Pollaidh]

My 3 year old has severe (off the scale, oh look let's get all the other staff in to look at the freaky baby) hypermobility. She's very floppy, her feet turn in, she falls over quite a bit and for quite a while she lost confidence physically. It's throughout our family so we're quite experienced.

Despite the laxness of her joints, we've been very lucky in her development, she walked etc early in fact, which amazed the medical staff. She seems to have quite strong muscles, which keep her joints together. She needs sturdy shoes (firm snow boots best), and might have inserts later on. She tends to get tired easily and still has long naps (I don't mind . We were advised to avoid certain behaviours, such as sitting styles, which cause more damage, no contact sports. She does gymnastics and yoga and we're advised to do ballet to improve muscle tone, balance, core strength and proprioception. You have to be careful though as an irresponsible teacher can cause more damage by overstretching the joints. When she's older I think she'll love to do pilates with me, and we do exercises like standing on one leg, sitting on a ball, planks etc together. This has really rebuilt her confidence and stopped her falling over/down the stairs so much.

HM children can be clumsy because they don't know where their limbs are - I was told off so much for stomping around, clumsiness etc as a child, and now I find out it's all part of HM. Warn schools etc so they don't criticise and knock the child's confidence.

If they suddenly start screaming for no apparent reason, or complaining of injury, take them seriously. We've had a dislocation already. Also make sure HM is on the front page of their hospital summary notes, so that you're not suspected of abuse when you take them in for yet another injury.

Without keeping them in cotton wool, try to discourage them from damaging (twisty and impacty) sports like long distance running, rugby, squash, tennis - as once injured another problem is it takes a longer time to recover, and they may not heal fully. Also an injury often means imbalance and limping, which can then trigger another injury in such a child.

[HopAndEggRoll]

aunt while I appreciate he is very young to have a diagnosis, the

[HopAndEggRoll]

Sorry!

Pysiotherapist was shocked at just how hypermobile he is. His ankles do not point straight at present and his foot flexes so his toes touch his shin etc. I know its not normally dx this early but he is currently severely affected.

I'm hoping as he gets older his joints will stiffen up a bit. We will just have to wait and see.

I'm very grateful for the sharing of your experiences.

[Pollaidh]

Hop his joints might not stiffen up, but you can do everything possible to build up the muscles around the weak joints, as they will help hold everything in place.

My daughter has it severely but we have already seen a massive improvement through physio etc.

I have to do my physio religiously and will continue all my life, but I have a happy life, successful career (although a tendency to get injured and ill rather more than I like), and although I can't do many of the sports I used to live for, I manage. Just don't miss physio, even for a week.

[auntevil]

Sorry hoping egg roll - I didn't mean the hyper mobility was difficult to get a dx early, it was the 'other concerns'
Our situation is the converse to yours. Difficulties were noticed and investigated for years before anyone said ' hyper mobility' and now it is still taking time for them to join any dots

[HopAndEggRoll]

I know aunt its all so frustrating and at least we're lucky he's been picked up young.

He's currently in bed with me and keeps bearing me up with his flailing arms

[CouthySaysEatChoccyEggs]

DS2 was my 'most' hypermobile DC (though 3/4 have dxd Hypermobility).

At 9 mo, he was still as floppy as a newborn and couldn't support his own head. Through perseverance, he finally took his first steps at 3y7mo.

However - there are VERY few babies that are as hypermobile as DS2! He is the most severe my Paed had seen in 20+ years of practice. Ditto the Physio & OT.

Is your DS2 rolling over? Sitting? Crawling?

A good place to start would be to ask for a referral to Orthotics. The Orthotist will decide whether Piedro boots, orthotic shoe inserts or splints would be the best thing to help your DS2. I GREATLY recommend orthotics for helping hypermobile DC's with posture and ability to weight bear, support themselves and walk.

The way I eventually got MY DS2 walking was after he was crawling, holding him up under his armpits (never by hands in the air, as his shoulders dislocate too easily), put his feet on top of my feet, and step, step, step. For hours. Every day. For a year.

I can just remember back then, how I used to cry when he was in bed, thinking he would never walk.

Fast forward a few years, and he's now 9y3mo. And doesn't stop running!

(Ok, he falls a lot still, can't yet pedal a trike, and can't do monkey bars because his shoulders still dislocate, but he runs! And climbs! And jumps! that one took him until he was 7yo before he actually left the ground... )

Your DS2 sounds like he is more like my DD and my DS3. DD walked at 19 months, and DS3 walked at 14 months. Mind you, DS3 still isn't safe walking around outside, he falls too often and he's been walking for 12 months now. I'm hoping his orthotic shoe inserts help. They've made a visible difference to his posture as soon as they went in today.

[CouthySaysEatChoccyEggs]

DS2 had Piedro boots from the age of 7mo. And now has orthotic shoe inserts (as does DS3 now as mentioned as above). He had Physio from 11mo, OT from 18mo.

His handwriting is still frankly pants. He has trouble with fine motor stuff.

DD however, can throw, catch, write really neatly (though not as quickly as her peers, and not for as long before her hand starts hurting), she learnt to ride a bike at 8yo, and put her socks on at the same age! She still struggles to sew, and has some issues with fine motor control but partly mostly because she gets too frustrated to persevere. Personality more than anything.

DS3 is ok with fine motor already - but he is a VERY determined read stubborn as hell little boy! He is 2y2mo and he decided he WOULD put his own socks on today. It took him 2 hours to work it out, but he put his own socks on. He runs around and falls indoors, he climbs, but I automatically did the same method with him of teaching him to walk as I had DS2, but at a far younger age.

[CouthySaysEatChoccyEggs]

Pollaidh - I know the feeling of calling staff in. I knew it was far far worse than DD's when they got a Paed from the next PCT over to come and 'see' him.

Yes, both DD and DS2 get tired far easier - always have a nap after school in PE days. Pollaidh's answers are what I did and was told, she's refreshed my memory tbh, as DS2 is now 9yo, and DS3 has only very recently been dxd so I'm just getting back into the swing of it after years!

[Catchingmockingbirds]

Ds wasn't diagnosed with hypermobility and hypotonia until he was 5, mainly because I'm hypermobile but didn't know and just thought it was normal . He walked at 15 months but needed a buggy until he was 3 and a half. He still can't walk or stand for too long and has an occupational therapist to help him with his fine and gross motor delays and to help strengthen his core muscles which are very weak.

[HopAndEggRoll]

couthy he can roll but doesn't very often and can sit but no crawling, shuffling etc.

He was late holding his head up, sitting and rolling but doesn't sound as bad as your ds.

It's funny that other than his elbows ds1 isn't hypermobile but has hypotonia as he didn't walk until he was gone 2, struggles to get dressed age 4.11, can't hop, and jumped, put socks on, did up coat and climbed etc since starting yrR.

We were told they are linked and genetic but as much as I thought ds1 had a hard time learning these things he is and was nowhere near as bad as ds2. couthy's post just shows there is always someone having a harder time and it gives me more confidence that he will get there in the end.

[rabbitstew]

HopAndEggRoll - at 15 months, my ds1 still couldn't even roll over. He could sit but only if put in a sitting position as he couldn't get from lying to sitting. He also couldn't crawl, bottom shuffle, pull to stand or cruise and if he got tired sitting up, would fling himself over backwards and lie on his back. Nevertheless, within 2 months of starting physio, he was learning how to crawl and could walk (with piedro boots) just before he was 2, so it's amazing how much difference and how quickly appropriate physio can make - provided the child is willing to engage in an awful lot of effort! Countless hours were involved... and he will have to remain pretty active all his life to prevent the muscles weakening and failing to support and protect his joints. The biggest thing, really, is getting the balance right - recognising how far you can push yourself and when to stop so as not to cause long term damage or pain, but to be able to lead a full and enjoyable life.