Late walking/hypermobile daughter 22 months

[lulurose]

Finally got a physio appointment for my dd2 22 months who knee walks everywhere and is still nowhere near walking. They have said she is hypermobile but didn't appear too concerned. Does anyone have any advice/reassurance regarding this, I am worried now, she cruises a little but is still happier on her knees. Have been told to get her some shoes that are more fitted up and around the ankle.

Thanks

Have they said what joints she is hypermobile in?

ds1 has hypermobility syndrome - mainly knees, ankles, elbows, wrists, and fingers but he also has dyspraxia, so it is a bit hard to which of his smptoms are from which condition!

He was also late walking, and his ankles tend to turn in if he tries to climb up high steps. He gets tired easily - prob cos of the dyspraxia too, but also because with hypermobility a child has to put that much more effort into movement.

I think you may have to experiment with different types of shoes with your daughter. ds1 is actually best in trainers.

He has caught up a lot now, but still falls over a lot, and also has a tendancy to dislocate his fingers. He has extrememly hypermobile fingers so finds it impossible to apply pressure with a pencil.

I think hypermobilityon it's own is fairly easily overcome with physio and occupational therapy and as your dd gets older she should be fine. There is a website somewhere, will try to find it.

hypermobility syndrome association

also, do you knwo sarah Jane from cbeebies? She is hypermobile and was a contortionist before going into children's television.

The extreme flexibility can be a great asset for sports such as gymnastics.

Ds1 isn't hypermobile but didn't walk 'til 6 weeks before his second birthday. Both me and dh walked at around three apparently.

has she been assessed of referred to orthotics for piedro boots yet?
My dd had low muscle tone and slight hypermobility in knees and ankle and these helped a lot they are lovely little boots now in fab colours and styles!

Thankyou all, no we are having another home visit on Monday as due to dd not being very cooperative today they were unable to see her bearing weight on bare feet (only in shoes). The physio could bend dds little finger right back and immediately said "hypermobile". Hadn't heard about the Piedro boots, thanks, will ask on Monday. Do your dc walk "normally" now? To what degree does hypermobility affect them getting around? She was diagnosed with type 1 diabetes in August so we feel so worried aout her at the moment, yet another thing for her to cope with.

ds1 still ahs a very unusual gait, and is a bit slower than his peers, but he manages. He couldn't walk long distances until he got older and was still in a pushchair at 4. I should probably look into boots for him really.

Been out this morning and bought some little ankle boot/shoes and she seems a bit steadier...I guess what I'm asking is does this hypermobility affect childrens long term development? What do Piedro boots do? Why are they so good? Thanks x

How much children are affected by hypermobility varies enormously. Lots go through life without any problems whatsoever and find it is actually a benefit (witness David Beckham and countless ballerinas!). Others develop pain and/or mobility problems and may even end up disabled. If you have pain/mobility problems with your hypermobility, you are said to have hypermobility syndrome, rather than just being hypermobile. This may also be connected with e.g. incontinence problems and a tendency to constipation (sometimes also with a tendency to bruise or tear more easily).
My 11-year-old daughter is at this more severe end of the spectrum and has days when she needs a wheelchair. The longterm prognosis is that she may well end up more or less pain free, but that she will always need to do physio exercises and pace her body carefully.

Typically, hms manifests as knee or ankle pains in childhood and/or back pain in adolescence. This may never happen to your daughter, but if it does:

don't panic! the pains are not dangerous, just painful

on the other hand, don't let any doctor talk you into believing that there is nothing wrong with her, that it's all in her mind, that she is dramatising etc etc. Just point out that there is already a diagnosis and insist on being referred to a rheumatologist, a podiatrist,a physiotherapist and an occupational therapist.

Should you ever need them, Great Ormond Street Hospital are THE experts on this condition.

In fact, it would probably be a good idea to have her checked out by the podiatrist and the OT before she starts school, in any case; she may need something minor like insoles or a special pen to help her not to overstrain her joints.

If she does develop problems (and remember there is a good chance she won't!) it will still be a benefit to her to have been diagnosed this early. Many families go through years of disbelief and sometimes even accusations of child abuse because their doctors aren't clued up enough to pick up on the real problem. The link to the HMSA in an earlier post is an excellent one: these people are most helpful and full of good advice. Just remember that their members are primarily at the more severe end of the spectrum, so don't be too worried by other people's experiences.

piedros are orthotic, therapy shoes, they are superb.

I didn;lt walk until 2 and have hypermobility. In fact, I can bend into all sorts of postiotions (well, before I got fat anyway)

IT hasn't caused me any problems!!!

are you IGW?

Btw, I did get back pain as a teen as connected to hms, but it wasn't too debilitating and would come and go.

am I what, fat or hypermobile?

Both!

Dure, yes I am IGW,

Make that fat hypermobile and a thicko

pmsl

I shall have to pick your lack of brains sometime, I'm never sure where ds1's hypermobility starts and dyspraxia begins!

Tbh, Chopster, I know little about it except my own experineces. I only found out when I was 21 after bteaking my arm.

After a bit of investigation, the docs concluded the back pain I had theought my teens was directly atrributablpe to hms, and I have a moderate to mild "strain" (couldn't think of a better word!)(

Apart from the back pain, it has naver really made a great deal of differnce to me, but it explins why I am bendy (bendier still before I got a belly)

This is really interesting. I think this is what my brother and mum both have. My brother is so incredibly mobile in his joints it causes him a lot of pain, when he writes as his joints sort of bend back to front and he basically has it in all his joints as far as I can see and my mum has this too. My mum has knees that bend backwards amongst other things and several other members of my family have odd joints that bend backwards including myself.

That web link was very interesting. Is it worth getting my brother to see a doctor or it one of those things that is just something its worth knowing about?

My dd was very late to walk and I wonder if she has it to some extent. I will have to find out more.

Lailasmum, I think it would be worth it for your brother to see an occupational therapist: with the right sort of pen and a few easy exercises, he might be able to write without pain, which would certainly be worth it. My dd has been given a special pen (they sell them in WHSmiths) and told she needs to use a sloping board when writing to improve her posture; she also does finger exercises for a few minutes twice a day. Physio might also be a good idea for the rest of your brother's body, to prevent strain and injury. My dd has had to retrain how she stands in front of a mirror, as hypermobile people often have poor proprioception (knowing how their limbs are positioned) so a good posture can feel very unnatural to them.

My ds (14) is hypermobile. It was diagnosed when he was about 6.

His feet turned inwards and he had those support thingies.

He has a very weird gate and slouches everywhere (or is that just being a teenager)It has affected him, in that he suffered a lot of sprained ankles from about 7 to 11, but these have stopped now. He is a slow runnerbecause of his gait, which makes him fed up, but that's about all he suffers

Gait of course..........not the garden gate you understand.........

Have just re read this thread.

DD 17 months old, walks on her knees everywhere, and doesn't seem overkeen to walk. She has a foot which turns in. Took her to docs about foot, and she said nothing to worry about. Never thought about hypermobility. Should i take her back?

Thankyou for all the replies. Fizzbuzz, I'd follow your gut instinct on that one butit did take 7 months from referral to physio appointment. The general opinion seems to be that if still not walking by 2 then to seek advice. The physio told me children who knee walk often have turned out feet due to the pressure/constant leaning back on their legs when on knees.

Hi

I dont know if any with experience can give any advice? My daughter is 25 months old and still not walking (her twin brother is, so very frustrating for her). She has a diagnosis of hypermobile joints and hypotonia, will now bear weight (although wobbly) on her ankles and pulled herself up yesterday for the first time! My concern is that the physio who has seen her on a couple of occasions was not very useful at all and my paediatrician does not feel that physio can help - all in good time is his opinion? Anyone else feel that physio is crucial for these difficulties or do they also feel that with a gross motor delay, it is indeed down to the child? For ref, she has great fine motor skills, very bright and verbal so purely the gross motor that is the difficulty.

Any advice greatly appreciated as am now getting really worried about her!

Thanks!!