re21month old dd still not walking

[babyjane67]

after11wks of waiting we finally got a physio app4our dd!
shes got hypermobility in all her joints but especially her hips knees&feet.
so weve now been referred2orthotics for an assessment as physio thinks she needs special shoes/inserts2help her walk.
should have that for end of july.
physios gonna stay with her as she gets older2see how its gonna affect her development as she grows.
she will always be behind her peers4all the gross motor skills but at least we know what it is now&how2help her.

Glad you got physio and orthotics appointment babyjane.

DD - age 3 has low muscle tone/hypermobility in most joints too. We just do lots of exercise like swimming to help keep her strong which helps to compensate for the weakness.

Hope your DD is walking soon..

Ds has hypermobility and didn't walk until he was 22 months. Hips/knees/ankles are worst but also elbows/wrists. He wears orthotic insoles and will do until he stops growing.

He had physio once he started walking which helped. What really helped was doing sports at school. At reception sports day last year he managed to run his races without falling over. First time ever. His teacher was a keen runner and taught him how to run properly and spent a lot of time with him. He even came second in two races.

He does lots and lots of exercise and the difference now between him and his peers is imperceptible. He has just turned 6 and when he was your dd's age I thought the same as you so it has been amazing to see his transformation. He will always be hypermobile but his muscle strength has made a real difference.

He does swimming to help with muscle development. He also does cricket, golf, karate and horse riding plus rugby in the winter. I am keen to help him find non-contact sports that he enjoys as there will come a time when rugby becomes a contact sport and he will have to give up.

did ask physio if theres anything we can do with her while we wait4orthotics app but she said there isnt really other than encouraging her2stand in dif positions&2kneel up as this strengthens her
legs.
she crawls everywhere,pulls herself up,climbs on the furniture&up&downstairs.it doesnt stop her being into everything bless her!!lol

You may find that she has to wear the orthotics all the time - ds did for a while so we had indoor boots and outdoor boots. Made it a bit hard for him to play with other children his age indoors as he had boots on and they didn't and obviously there was a risk of him treading on their bare feet!

One of the milestones I remember was when ds started walking upstairs normally - rather than doing one step at a time with both feet on the same step.

that must have been a lovely moment4you
physio said she prob wont have2wear them all the time.will also have2have time without them so she learns how2do it herself also

babyjane as the mother of a non-walking (or pulling up)19 month old DS, can I just ask is your dd 21 months now or was she 21 months when she was referred? Also, was she referred straight to physio or did she see a paediatrician first? Thanks

hi zen1
my dd was18months when she was referred2physio by our gp.shes also a paediatrician.
that was april1st&we saw physio lst mon!
dd turned21months yest.hope that helps

my ds was diagnosed hypermobile at 6 mths - he's hypermobile in every joint. Didn't walk til he was 25 months. He was also delayed in speech and behaviour and only when he started walking did we realise how much that the lack of walking had effected his development. He's chatting away and walking up stairs now and he's only been walking 5 months! Can't believe how quickly things can change! It was a difficult time getting here though as you worry so much when things don't seem to be following the 'normal' pattern of development.

Ds has Piedro boots through NHS physio -they're really good. I found the Hypermobile Syndrome Association really helpful too. Ds under GOSH now as his hypermobility quite severe but there's so much that can be done and we've been told he'll be absolutely fine. Great to hear from you MollieO that once they're older they are running about with their peers - hard to get that perspective at times when they're younger and struggling to walk without falling over. Hope all works out well zen1 and babyjane - I'm sure they'll be up and about before too long - so much can be done now. Good luck!

Thanks babyjane and squiggly1. It is good to know that progress can be made with physio. I guess i'll have to get DS referred if he doesn't pull up soon.

i did go on website other day but wasnt much help as couldnt seem2get into it!
went into it from the special needs bit on here.is there any other web address for it or easier way2access info on it squiggly1?
thanks

hi babyjane. Hypermobility syndrome's website is www.hypermobility.org the phone no is 0845 345 4465. I left a message with them and it can take a while for them to call you back as their phone is manned by volunteers but they know a lot about hypermobility!! The only thing I would warn you about is that hypermobility is a spectrum disorder so you can get some very extreme cases of hypermobility which slightly scared me when I was looking at their site but don't think your dd sounds as though she's in that extreme end of the spectrum.

Definitely good to get all the advice and support you need. Not sure what part of the country you are in but I would also push your GP to refer you to specialists - Great Ormond St Hosp are specialists in this field and we have found them to be so helpful and supportive with ds. Think there is also a specialist hypermobility clinic in Leeds?

Hope this helps. Very best of luck.

thanks so much4that squiggly1.thats a big help!will ring them2moro if its open wkends?
will look on site in min!
we are in bristol.do you have2be local2get the help from great ormond st?

what is gosh?

Sorry! Gosh=Great Ormond Street Hospital for kids - nope you don't have to be local to get their help...maybe just a bit persuasive with your GP!

ah rite!lol
still couldnt seem2access much info on site.prob me!will try again.
will ring no2morrow as weve had very busy wkend
thanks4all your help sqiggly1