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

Hi - yes, my DS1 didn't start to walk until he was 26 months old. He has hypermobile joints. We were referred when he was still not walking (and showing no particular interest in doing so) at 18 months. We saw a consultant within 6 weeks I think - 18 weeks seems like a long time. She also referred us to the paediatric physio team at the local hospital.

He sat unaided at 7 months, was late to crawl (14 months i think) but at around 16 months people started to ask why he wasn't walking and so we got him checked out by GP. GP said that if he wasn't walking he would be referred automatically at 18 months.

I know what you are going through, it is awful. We used to meet up with my NCT group (so children were exact peers of DS1) and the last time we all got together I came away so upset. He was 17 months and sat and played on a blanket the whole time whilst the others ran around, climbed up slides etc. I felt that the fact he wasn't walking was going to impact on other aspects of his development and that was so worrying and upsetting.

Having the diagnosis of hypermobility was really reassuring as it meant there was no reason why he couldn't walk, he just needed to strengthen all his joints to be able to do so - ankles, knees and hips. He was also the world's most cautious toddler and is a bright little boy - the physios said he had probably worked out that he wasn't strong enough to take his weight so had decided not to try. So, once we understood this and knew there was nothing sinister underlying it we were less worried and it meant I could shut people up who asked why he wasn't walking as we had a reason. The advice was to keep him active to help him build muscle tone - lots of crawling up and down stairs - and to get him shoes that gave good ankle support to encourage him to weight bear more.

Then one day, he literally stood up (he was sitting on the bottom step of our staircase) and walked. About a week later he was no longer crawling. He was very steady on his feet and we had very little tripping, stumbling etc. It was like he'd always known how to do it but he'd decided that the time was right! (And it was the in the nick of time as I was 6 months pg with DS2 and was starting to struggle carrying him!)

ANYWAY... to cut a long story short he is now 5 and started school last September. He has just about caught up with his peers in terms of jumping, hopping etc. He is still cautious so this may be something to do with it but we were told by the physios that he would catch up around the age of 4. But other than that, you'd have no idea he was such a late walker. DS2 didn't walk until 18 months - I think he has the same thing but milder and is a different character - but having been through it once I was much more relaxed about it.

I hope this helps, I feel for you. All the best with your DD - you will feel much better when you have some advice. It is horrible to feel that your child is missing out or that you have somehow failed them but if it's the same thing as DS1 then she will be fine and get there in the end, just maybe at a slightly slower pace.

Bumping this thread to see if anyone else has any input!

DD is only 6 months but I'm taking her to our GP on Friday because DH and I are concerned she is hypermobile. I have Hypermobility Syndrome and DH is hypermobile with double jointed shoulders, so we knew she would likely be hypermobile, but we didn't expect to notice a difference by 6 months!

All her joints click some of the time, her shoulders most of all. But what's concerning us is that when we pick her up with hands under her arms, you can feel her shoulders slipping slightly. It's a marked difference to picking up any of our friends babies who feel so much more solid. We used to think it was just because she was underweight (initial issues meant she dropped from the 50th centile to the 2nd) but she's now back at the 50th centile and it's more marked, not less.

She's very active, loves to stand with help and will take her own weight. I'm a bit concerned that she is putting strain on her joints being so active in the way she is - e.g. she'll flop forwards at the waist and then wriggle forwards to try and crawl which does not look good for her hips! None of my friends babies can do that, either.

interesting to read this...my 5 yr old son has just seen a consultant after 3 years of 'growing pains'. gp would never refer until now, turns out he has flat feet and mal alligned legs plus hypermobility. while i am glad its nothing sinister i am annoyed its been left so late. he has to have inserts in his shoes. he has all the signs, clumsiness, pains and while he can run, jump etc he almost looks like he has wooden legs. poor little man
xx

Hello, I know nothing about hypermobile babies but I wanted to say I have (apparently) got hypermobility issues with my back, neck and knees. Only really realised when I was about 16, fell down some stairs and then couldn't stop my back clicking after (if I lie flat it clunks backwards). I had physio at first which didn't help, then chiropractice which helped a little and then saw an amazing osteo who not only helped but showed me what I could do to improve things. From being barely able to walk when I had my period, I managed to carry a humongous tummy through pregnancy no problem. So, firstly, don't worry it doesn't mean there's no bright outlook or improvement and secondly, have you thought about paying to see a child osteo who could advise you what to do now?

Good luck and my thoughts are with you.

Thanks for the support.

I'm not too worried about it as I have always coped fine with my HMS and I had minimal issues growing up because I kept so fit. With physio I was able to ski slalom and race yachts, so it never held me back.

I just know from my own experiences that early intervention is really important...I'm just a bit shocked that I'm thinking about needing "early intervention" with my 6 month old. I guess I'd assumed she'd only show signs at a similar age that I did.

Or perhaps I'm only noticing it because I know what to look for, whereas my mum wouldn't have done...

If the GP isn't helpful, I'll contact Prof Grahame personally and an excellent osteo i know - hadn't thought of him before but it's a good idea if the doc is no help.

Hi, sorry I wish I had seen your thread earlier. I have Ehlers Danlos Syndrome Hypermobile Type, as does my ds. EDS is basically a more severe form of hypermobility (Benign Joint Hypermobility Syndrome). My ds was dx at the age of 20 months, it was still a tentative dx then as all dc are very flexible at this age, his dx was based around my dx and his flexibiity. He too, had been late to crawl, roll over, weight bear etc. He also cried when walking, fell frequently, had excellent find motor control but poor gross. He was dx by Professor Rodney Grahame, who is one of the two recognised national specialists of the condition. Getting a dx means you can manage the condition much better, and you are aware of any limitations. 18 weeks seems like a long time I know, but just try and enjoy being with her in the mean time and not worry too much.

I tell you this bit, not to frighten you to but explain there are different levels of difficulties associated with hypermobility. My ds is now 8, academically very bright, but suffers from a lot of pain, he regularly subluxes (partially dislocates) joints and dislocates joints, he has support from the physical disabilities support service to assist him in school. My ds is severly affected, most children will experience some pain or aches, and some joint instability, particularly during times of growth spurts it would appear anecdotally. I started a thread under special needs children called EDS and hypermobility. On there are other mums of children with EDS, BJHS and Marfans syndrome, and even some mums whose children do not have it. There is a waelth of expertise there, lots of different experiences, lots of people at different stages of dx and management. If you want to come and join us, they are lovely people and will offer help, advice and their experiences willingly. I will post the link below.

Here is the link
www.mumsnet.com/Talk/special_needs/1021063-EDS-Hypermobility

I hope you join us for support and

Thanks for the link. I'm quite aware of the different variations - have got friends with EDS as well as others with HMS.

Reading about young children with hypermobility,a common theme seems to be that they are usually late to roll, crawl and walk, whereas DD seems to use her extra flexibility to fling herself around in ways other babies can't seem to do.

Meant to say, I sublux joints pretty regularly too. But physio as a child and teenager really helped me.

Ds2 (11) has hypermobility and was also a little late in walking. He is extremely clumsy often "bouncing" off of things to keep his balance. He has regular physio and has insoles for his shoes, but his walking gate is awful, one foot turns inwards almost to a 90 degree angle.
He has had no problems from peers so far although he starts secondary school in september and I worry that his strange walk will attract attention, but we will cross that bridge when we come to it.
Unfortunately, before we had a diagnosis, ds would "show off" to his friends in school at quite how flexible his lower limbs were and would constantly stand with one foot facing forward and the other backwards - this obviously didn't help him as it reinforced the flexibility. As much as I discouraged him his peers encouraged him and I fear this party trick has made his normal walking gate a lot worse :(

My ds also had a tendency to throw himself around, bend his knees, hips and shoulders in concerning ways to get out of being picked up etc!