Diagnosed as being hyper mobile. What now?

[sparkle101]

DD is 17mths old, she has been crawling since 15 months and pulls herself up on the sofa and holds onto it as she walks, she occasionally walks with her walker but seems very unsure and doesn't seem happy with it!

Physio visited today and said that she is hypermobile in her ankles and her wrists. She explained what it meant but didn't say if it would get better, if there was anything I could do, how long it will put her back for, will she walk within required time limits etc.

We have four visits planned to do some exercises and work on things but am really worried about what it means.

Has anyone any experience of this, please tell me it'll be okay.

Hi sparkle sorry to hear you're so worried.

My DS is 15 months and hypermobile and hypotonic (low muscle tone). He has been under a paed and a physio, although he is now signed off from both. The physio actually signed him off around the time DS could pull himself to standing.

Hypermobility can be completely benign and can pass - I think this is reasonably common. This is what DS has - the guy at great ormond st. called it transient infantile hypotonia with hypermobility. He said there is sometimes a genetic element - e.g., if you or your partner were very bendy as children then your own children might be too. Looking back, I think I was probably hypermobile as a child - I could sit in very odd positions and was a late walker. I'm fine now!

Hypermobility can be a lifelong thing, although I think this is less common. It can also be a feature of other more involved syndromes and conditions - but again, this is rarer.

The physio should have given you excercises to do with your child, I would have thought. How did you find the physio? Was it a local GP referral thing?

If you are worried, and haven't already got one, you could ask your GP whether a referral to a consultant is warranted - he or she may say it's not needed. Even if they think it is, then don't fear it's all doom and gloom: hypermobility is realtively common and often children grow out of it around adolescence.

Doh! Typed a long, rambling response but lost it. Here is quick summary:

• don't worry! Hypermobility is quite common, some don't know they have it and some even use it to advantage (ballet dancers etc).
• my dd2 (5 years) has lax ligaments (wrists, fingers, elbows, knees). Takes her longer to learn how to do some physical stuff but she does get there, in her own unique say.
• have seen paediatrician and physio over last yr (only diagnosed last year, you'd think I would have noticed that arms and legs look like they are 'bending backwards' sometimes, but no, I didn't). Signed off by both this week as they are happy with dd2's little exercise regime (swimming, moderate ballet, Fun Fit, walking) and they don't think she needs more help right now (may do at puberty time) or that her hypermobility linked to anything else (which would be RARE). Physio recommended swimming especially, also cycling, exercises to strengthen core (tum muscles) also dancing, trampoling ok - but in moderation.
• dd2 sometimes has mild pain in lower legs, esp in morning when muscles not warm.. distraction works well! Also sometimes sits or throws awkwardly which leads to discomfort - she will have to learn how to manage her body I guess.
• dd2 does 15 mins Fun Fit sessions each morning at school. Like mini-pilates lessons for children, have really helped.
• don't do mad, frantic googling like I did. Why not ask yr physio for more clarification or ask GP to see paediatrician (if not done already).

Good luck,please don't worry (I know it's difficult when you're presented with something you've never heard of before - hypermobility apparently often heriditary, but not in my family or DPs)

Right, going to post this before loose it :)

Hi

DD was referred by Hv after doctor raised concerns about her immobility, we have had two sessions and booked in now for a 4 week plan where I have been told we will be given exercises for her to do.

I am just concerned that all my friend's children have been walking for ages or are showing signs of being far more advanced than she is and can't help thinking it is something I have done wrong (although the diagnosis helps).

I know that when she starts walking I will wish she would sit in the same spot but it's just difficult!

My DD has joint hypermobility. Is very flexible. Can practically turn her feet 180 degrees without hurting herself. Her arms & Legs bow quite a fair bit. When shes tired her feet turn inwards and she has a habit of tripping over her own feet. other than that she copes alright.

She has however, got it because I have severe hypermobility & fibromyalgia.

Thank you, can I ask you all when your children started walking? Just want to know what to expect really.

My DD was 13 mths when she started walking

Ds is just over 15 months and isn't walking yet, but not particularly worried as his sister didn't walk until she was 16 months either. He will take a step but then his legs go wobbly and he sits right down again :)

Dd did not walk until 19 months, ds walked at 14 months.

One of my twin boys is hypermobile. He walked at 19 months (his brother walked at 14 months). We took him to the physio at about 19 months because he wasn't walking but sod's law he started walking between the referal and the appt. The physio wasn't too worried by him. She said he is quite splay legged and flat footed but that is very common in toddlers who have just started walking. She says to keep an eye on him, but basically he will be fine - just very bendy.

Hi Sparkle,

I am hypermobile and was diagnosed when I was about 3 years old as my knees bend the wrong way! I score 9 on the Beighton and Brighton scale, which means all of my scorable joints are hyperflexible. I dislocated my knee three times between when I was 16 and 18 and needed to have the ligaments cut and retied. This took along time to recover from but I am now in my 30's and although it gives me some joint pain I am able to ski, run etc.

I have seen several physios, osteopaths etc and they have all recommended keeping my muscles strong through exercise to protect the hypermobile joints. I think the dislocations as a teen came around the time I stopped doing sports, ballet etc and was more interested in hanging out with boys!

The website below has a lot of info on hyper mobility. I have hypermobility syndrome, which does cause a few other issues but having hypermobile joints, is not in it's self an issue,as long as you keep the muscles strong around them and can in fact be a benefit to dancers, gymnasts, yogis etc!
www.hypermobility.org/

I have been looking recently a doing something called, Bowen Technique that can help people with HMS.

HTH x

Hi again Sparkle, DD2 (hypermobility in wrists, fingers, knees, elbows) walked at 16.5 months, never crawled, just bottom shuffled. For comparison, DD1 (no hypermobility) walked at 13 months. But I know a few babies who didn't walk until 18-19 months, for no discernible reason - and definitely not because their mums had done anything wrong. Sounds like you're doing the best you can for your baby including getting professional help and advice, please try not to worry :)

My daughter has it, walked late, 15 months but she is fine, doesn't do much weight bearing exercise but swims a lot and that was the main recommendation, swimming twice a week at least.

my two dc with hypermobility walked around 25 months.
familial hypermobility but Ds also hasother issues (chomosome deletion)

dd has also been diagnosed with coeliac (she suffered from being undiagnsoed til 4 which didnt help strength and stamina) she did phsyio for hypermobility an d has no other issues - talked fulls enteces at 14 months etc . she isnt fastest or strongest in class in PE but does ok.

can cause jiont pains and easily sublix joints- building muscle and strength is crucial.

hyermobility .org site is useful.
great ormons street has a specialist clinic for kids with specialsistphysios and if severe you can caccess their week long intensive phsyio sessions

hi i have 4 dc that are hypermobile

ds1 walked 9 months
ds2 14 months
dd walked 16 month

Ds3 has a more severe form and did not start walking till turned 3 and struggles even now at almist 7 but need to stress his is unursual and may be other factors at play to

I have this, though probably not seriously. It was only ever considered cool and a bit freaky when I was a kid in the 70s - bending my joints in weird ways to impress the kids in the playground, etc.

It became an issue when I got pregnant myself as it can be a contributory factor for SPD, which unfortunately I had very severely. I have recovered fine. Pilates and good posture.

I have Fibromyalgia and Ehlers Danlos Syndrome hypermobility type.

Tbh, there wasn't much worry about me as a child and have only recently managed to get a proper diagnosis although we always knew what it was.

I was very bendy as a child but I didn't struggle then and hopefully your dc will be able to deal with it easily. Some forms of hypermobility are almost invisible.

My ds 4 months is being watched as well because his joints 'pop' a lot so I know the worry but usually it's very manageable with physio.

Thanks again ladies,

We have the first physio appointment for her exercises on Monday so we will see what comes from that, DD has been pulling herself up with ease now so hoping she will follow with walking soon but she will do it when she is ready.

Thanks for putting my mind at rest!

Hi

My son was diagnosed with quite severe HMS at 2, he wasn't a bum shuffler but did commando crawl from 1, didn't sit up unaided till 18months and is now almost 2 1/2 and is no where near walking independent although does cruise and pulls himself up but obviously still need my help, im swimming him twice a week if I can doing anything to get him to move in to water also tke him to the park and he has a scuttle bug and he's buzzing around on that and doing anything I can to try and work those muscles, He's see's his paedatrician every few months and his Physio too but after reading all the posts, if we have more children are they likely going to have HMS too?? I'm sure you all know it's just really hard watching everyone else's children doing everything your so desperate for yours to do for you and especially themselves.

There isn't much support out there I guess unless you have a little one who has the condition you don't get it.

I'm scared he's going to go to school crawling?