ligament laxity and not walking at 18 months

[moowife]

My DS has just been diagnosed with ligament laxity - basically she's hyper flexible and uses her feet to scratch her head/sucks her toes etc.

But she is nowhere near walking alone. She handwalks and gets v frustrated when her peers and cousins all run around but she can't bear her weight alone. She cruises and crab walks but only for short periods. The paed. said she'd walk in her own time and gave no other advice.

Any suggestions for helping her would be really gratefully received - I have a 4 month old too and am getting exhausted carrying them both!

My DD who is 19 months is not walking very well on her own will walk very slowly and take maybe 10 steps but once she falls down will just continue to crawl. Have hospiatl appt next week so will know more. Not sure she is hypermobile but will find out. Just wanted to let you know you are not alone, it must be very hard with a newborn as well. My DD is a twin but luckly her twin walks well and has for a while so I don't have to carry two.

Here is a link of a similar discussion about this.

www.mumsnet.com/Talk/8/434780

My son is also very hypermobile. We had physiotherapy and he wore piedro boots for a while to support his ankles, which pronated quite severely. He walked independently at 23 months. I would push for physiotherapy if I were you - if you get it, the physio can organise the piedro boots, too, which are free on the NHS and look really good (I quite frequently got asked by parents where they could buy some, because they look rather attractive and very expensive!).

Your daughter will no doubt walk independently in her own time, but it may be quite some time without a bit of extra help... Once your daughter is up and walking, you can dispense with the boots to allow the ankles to strengthen up as much as possible on their own, to support the weak ligaments (although with extreme hypermobility, it may be necessary later on to have a bit of extra support again, to avoid joint injury).

dd is 20m and will cruise and hold on to one hand to toddle a bit but other wise a lazy bones! I'm 6m pg so i'm hoping she'll get a move on!!!!

Thanks for all those posts. Serendipity struck as I got an answerphone message asking me to confirm a physio appt for Monday - I didn't even know I had one so am delighted.

I will def push for the funky piedro footwear - my MIL has been going on about buying some for ages (as she had to for my DH when he was 14 months old, as he was a late walker too but not this late), so she'll be happy that I listened to her for once!

My DD1 is hypermobile, and I found that the only useful advice came from a Child Podiatrist, so push for a referral if you can. My DD was standing up (with support), at around 11 mths, but was clearly tipping inwards over her arches, and this did not improve by 17 mths. (no independent walking either) That was when I went to the HV, (useless), and the GP, who never mentioned Hypermobility, and only referred us reluctantly. The Podiatrist was GREAT, she diagnosed the problem in seconds, (there's a points scale, and DD gets all of them!) She was fitted with arch supports, which she wore until she was 3. We never had the Piedro boots - I wish we had, as it was REALLY difficult to find boots in the hot weather, (shoes are too shallow to take them).
Moowife, You asked for helpful suggestions, here goes: (trying to remember what the CP said!)
Get her some supportive boots NOW, don't wait until she is walking well. Support will help her. I went straight out after our first appointment with th CP, and bought some boots for DD, her walking improved in a couple of days.
The aim is to get her muscles as strong as possible, so build obstacle courses on the floor, make a game of climbing over them. Take her swimming. Encourage her to climb the stairs, (with supervision!) as much as possible. Put interesting things just out of reach, so she has to stretch up on tiptoe to reach them. As she begins to walk more, support her with baby reins, and maybe her hand on the buggy - very slow, but fun! Reins are a much better way of giving support than constantly holding her hand. You're asking her to walk with one arm stretched above her head, which effects the balance, posture and foot strike.
Once DD was walking reasonably, I turfed her out of the buggy for good,(at 26mths) and she walked everywhere. She is now 5, has the stamina of Paula Radcliffe, and while still amazingly bendy, has no physical problems at all. She MAY need some supports again when she hits adolescence, but we'll worry about that then! By the way, the CP said that Hypermobility is the main cause of children walking late, and now we have so few checks on toddlers it is very often missed.

wow, thanks Dragon30 - really really helpful.
We do go swimming every week - we're on a course with a teacher so are learning good techniques.

She enjoys climbing and descending stairs so I'll make a game of it daily. Maybe I need to make more time for physical exercise rather than all the reading. When we go to the park she loves the swings of course and she also loves the slide but after a couple of go's she'll decide it's too much effort to climb the steps and crawls away. I will have to persist.

Fingers crossed she enjoys the physio. Do I have to find a specialist shoe shop or buy online?

Hi moowife - glad my rambling was helpful. Re the boots - you may find that your physio will prescribe the Piedro ones. If not, well fitted Clarks are good, though there may not be any there at the moment, (mainly sandals). We bought some really lovely boots from Verbaudet,(sp?)but I think you will have to brace yourself for some long searches!
By the way, does your daughter have really flexible fingers too? If so, lots of squeezing activities will help. We did lots of Playdough, breadmaking, sand play etc. I didn't realise it was important until the CP mentioned that some Hypermobile children struggle with their pen/pencil grip, which can cause problems as they begin to write later on. Have fun, and good luck!

Would reiterate what Dragon30 said, that pencil grip can also cause problems. My son used to have huge problems making a mark with a crayon or pencil, because he just couldn't grip tightly enough and press down hard enough. Playdough, stirring things and sand play all help. But you also need to build up strength and stability around the shoulders for writing - writing with chalk on a blackboard helps with this, or even painting on paper pinned to a wall. And wheelbarrow walking...

My son can now press firmly enough to write with a pencil, but is still much better off with a fatter, triangular pencil to help with his grip - his fingers bend all over the place with a normal pencil or pen.

physio was good - showed me some exercises and is sending more. She said DD doesn't need Piedros so far so we're on the hunt for good shoes ourselves. Will look at V/baudet. Physio said she is hyper mobile in her hips, ankles and shoulders so I'll do some drawing exercises as well, as you recommend asteamedpoater and Dragon30.

Also, do your children sleep more than their peers? DD (18mo)has 2 naps a day while her peers all now have 1. I was wondering if it's because of extra effort she has to make.

my little boy is fifteen months he has hyper fleixble joints. He has just been given some Piedro boot to where to provide him with a good foot grounding and stabilise his ankles. They look ok not like herman munster boots ! they are provided by the nhs and should held him walk because they take some of the balance issues away. hope this helps.

Glad you saw the physio and she is helpful
Just a tiny word of caution tho... physios often don't prescribe Piedro boots because of the cost (no kidding they are about £80 in baby sizes!) not just because they don't need them, so if your DD is still finding it difficult to get moving by the time she is 2 I would suggest asking for an appointment with an orthotist too.. both physios and orthotists can prescribe the boots and orthotists do the inserts, heel cups, splints etc.

My son was a cooked noodle he was so bendy, but he did get there in the end. However his hypermobility and additionally weak muscle tone has knackered his feet.. they basically collapsed and he has worn full AFOs (splints) since he was 5, boots from 2. I wish I had been pushier when he was little to support his feet and muscles, because now he's stuck with splints! Of course probably most hypermobile children do simply grow out of it to a large extent, so not trying to worry you, just make sure you don't get fobbed off!

My son always needed a LOT of sleep too.. it's hard work moving a hypermobile body around , so not really surprising;) Sadly these days he seems to need NO sleep LOL!