Joint laxity/hypermobility in 18m old not walking

[EasyFriedRice]

Hi everyone,
My 18 month old dd who isn't yet walking or standing unaided, has been diagnosed today with joint laxity or hypermobility.
I was just wondering if anyone else's dc has this and what you've done to help them. Basically the physio said just encourage her to do strength building climbing and walking of all kinds. It won't be clear how much it affects her till she's older when she might be rubbish at PE for example.
I'm just wondering when I can realistically expect her to walk unaided. She's currently walking holding my hand (falls down every 6 steps) and pushing a study walker, and cruising. But she can't stand unaided, and just falls/sits down if she's standing and I take my hands away from her.

TIA for any tips/experiences.

[cory]

Both mine had this. Dd walked at 19 months.

Sadly, she has been quite badly affected later in life (to the point of actual disability) but not everybody is- I have the same condition and I am fine apart from slightly dodgy wrist joints. Was never good at PE, but did manage to earn a living doing manual work for a while so am basically ok.

Dd has found swimming helps a lot. Also dancing. Riding is supposed to be good if you can afford it when she grows older.

[efeslight]

my little boy was very premature and has not had a diagnosis of hypermobility, but was weak, assymetric after a brain haemorrage, so not sure how useful our experiences are.
we spent 18 months with a wonderful physio, who specifically told us not to use a walker, and not to hold him up to walk supported by us, her advice was to let him crawl, is your little one crawling yet? crawling strengthens the core muscles in the body, preparing them for walking later. has she started pulling up to stand and is she cruising along furniture by herself? i found that going to a soft play centre which has the spongy steps to climb up was wonderful, we go once a week.

[EasyFriedRice]

Thanks for your replies,
Yes she is crawling (13 months), cruising (15 months), pushing the walker (16 months) and walking holding one hand. She's definitely making progress even though it's slow. She can pull herself up to use her walker so she just does it when she wants to. She can also climb the stairs and can manage to climb the ladder of a small toddler slide we have in the garden.
The physio mentioned soft play too, but there aren't any very accessible from here (apart from one which costs £35 a month!). I wonder if you can get some spongy blocks for home which she could climb on .
I will try to take her swimming too but mainly at the moment she just floats along as we still have to support her, she doesn't do much swimming as such.
I feel she's making reasonable progress, she will now take 3 or 4 steps between me and DH when we're sitting apart from each other, but she sort of takes 3 steps then dives headlong into our arms, no conscious attempt to balance. She obviously still feels too wobbly to try walking or standing so we'll have to focus on building that strength. I took her out to the corner shop today and just held her hand and she walked along with me as best she could. It took forever but it was a fun thing to do.

[efeslight]

sounds like she's doing really well, there is also something really important about cruising along furniture, i think its something to do with improving the flexibility of the hips, so giving her lots of opportunities to cruise sideways would be good.
i looked into buying some soft play stuff, especially the steps, as our steps at home are lethal, amazon had some second hand, but still expensive.
i'm sure she'll be taking more and more steps every day. good luck.

[seaweed74]

Hi my dd is 2 yrs 5 months and hypermobile. Diagnosed at 23 months. She is still unable to pull to standing successfully or walk as problem is most severe in ankles. We attend physio and swimming has been recommended as dd also has low tone, but we have had special support boots fitted by orthotist. These weren't providing enough support for dd so last wk plaster casts were taken of her legs and splints will be fitted in a few weeks. We are hoping that they prove to be the key.

Although dd sat at 8 months, she didn't roll till 18 months or crawl till 19 months. Dd is fantastic at "walking" on her knees! She plays tig in this way at playgroup.

At 23 months we were told to expect dd to be walking by 3 years.

[mahaliha]

My DD has joint laxity/hypermobility, particularly in the hips, knees and ankles and, to a lesser extent, the elbows and wrists. She eventually walked unaided aged 21 months but was very wobbly and took a while to gain her confidence. She actually walked before she could stand! The physio recommended getting some little ankle boots for support which seemed to help. She also recommended going swimming in a pool with a very shallow end - shallow enough for DD to stand- as the water would help support her and strengthen her leg muscles.

DD is now 5 and it would be impossible to tell she ever had any difficulty learning to walk. We were warned she may tire easily as her leg muscles need to work harder to compensate for the loose joints but this doesn't seem to be the case. She's pretty good at PE considering DH and I are both useless. It sounds to me like your DD is doing great and hopefully it won't be long until she's an expert walker. HTH.

[oknow100]

Hi
My DS had a similar problem and I found this site quite useful - recommended on here on a search I did!

www.skillsforaction.com/

[EasyFriedRice]

Thanks for the link oknow, I just looked at it and it's a great resource.
I'm really pleased to hear your story mahaliha and I hope it will be the same for my DD.
I think I will take her to the gp and ask for a referral for physio as I understand muscle strength is the basis to compensating for joint weakness and I want to work really hard to give my DD the best chance.

[wonderinglonely]

hello Easy,

just to add, we have had a similar experience with DD (now 5). I know it is a source of concern so I wouldn't worry about asking for help if you feel it is needed.

When you saw the physio for the diagnosis, did he/she not suggest keeping your daughter on for more treatment?

Initially, we asked for a referral at around 16mths which led to physio. DD then walked around 22 months. We then relaxed for a while but it became apparent she was a bit 'behind' at around 3 so we asked for more physio. We were told of course, that she would tend to be a bit later meeting her physical milestones.

I found the HV a good person to ask and last year I asked her for an OT referral too. DD's score was low so they will be doing some more therapy with her and I also asked HV about more physio!

Having said that, DD gets on fine at primary school, bit of a concern about muscle strength/handwriting going forward, but fine at this level. We do various exercises with her and she enjoys her dancing classes and I see a real improvement in her with this. She only recently started 1:1 swimming, so your daughter is still very young.

We do as much with her as we can practically and financially, but the professionals are there. I didn't want to be taking up a place etc with therapists but HV was fine with it. If you saw DD running about you would not see an issue really until you compare her with others ability. We are hoping she will continue to improve, even just to the point of being 'unsporty'!

Moral for us was; ask for the help! I'm not sure we would have got here without being proactive.

[babyjane67]

hi:) our dd is2 9&was referred2physio@18months wen i took her as we were
worried that she wasnt walking.she walked on own4 first time a wk before she turned2
our physios been great help as have the orthotics people who have given her special boots2help her walk.i also found the hmsa site quite helpful(sorry im no good at doing the links)they deal with all things hypermobile!lol
hth

[cazinge]

Hi no child experience but I have recently (am 23) been diagnosed with hypermobility mainly in my knees, ankles and fingers/toes. I was born with what was then called a "clicky" hip & had to wear a splint to 18mo but walked ok about 22/23 months.

Mine didn't cause massive problems until I had a growth spurt at 15 and my knee dislocated of its own accord (!), it did it again when I was 21 and it caused my kneecap to fracture, subsequent physio to recover from that diagnosed hypermobility and everything made sense. I had an op last yr to correct my right knee so there are things that can be done.

I agree with others, swimming is really good - can you put your DD in one of those float things and manipulate her legs (like bicycle legs) as this is a good movement to strengthen and the resistence of the water really helps. Bicycle legs on dry land can also help (not sure if she would let you do this?). If you can get some soft steps, doing step aerobics (on and off a step) helps with balance and the muscles in the leg that keep the joints stable - you would probably have to help to start with, maybe put a step in front of the TV and put cbeebies on?

Hypermobility doesn't have to cause probs but would definitely make sure you are known to drs/physios etc early on as can cause problems when growing later on.

Hope this helps

[cory]

I agree with that last paragraph of cazinge's. Dd was basically ok (apart from walking late and unsteadily) until she hit the 7yo growth spurt and then she developed really bad ankle and hip pains and often was not able to walk at all. Ds was absolutely fine until he turned 8- we didn't even know he was hypermobile. He now needs extra support at school.

Of course this doesn't happen to most people- but I do wish I had known about it, I imagined all sorts of horrible things. Typical triggers for joint pains, apparently, are the 7-8yo growth spurt and the onset of puberty.

Try not to worry about it in advance- most likely it will never happen. But if it does, at least you will know what it is.

[EasyFriedRice]

Thanks again everyone. I'm taking DD to the GP tomorrow and will ask for a referral to paeds and physio x

[veryoldmother]

My DS 6 next week is hypermobile. Didnt crawl but walked very unsteadily at 17 months. Very cautious and behind physically and officially diagnosed at 4 by a pediatric rheumatologist. Had a year of physio under a a great ormond st physio (done by us but guided by her) to help core stability and now has OT once a week and a home programme to deal with gross and fine motor problems as his hands are badly affected.He is definitely behind but core stability now much better. I think his real issues have been/are social as he is very nervious of hurting himself in the playground but I think these will start to diminish over time. He is also hopeless at sport (but lots of that is genetic!)

[EasyFriedRice]

Just a quick update that since her diagnosis I worked on lots of strength building with DD (getting her to climb the stairs on all fours, climb in and out of boxes, walking every day to the shops pushing a walker etc), and she started walking at the beginning of August at the age of 19 months. 3-4 weeks later and she's really got the hang of it so I'm thrilled.
I've got an appointment with a paediatric physio on 5th Sept so I will ask to what extent she seems to be affected, what her likely future problems may be and what I can do.
Thanks again for your feedback everyone