Hypermobile 2 year old, not walking. Anything else I can do?

(29 Posts)
Birdies Mon 02-Sep-13 21:15:23

My DD1 is a long way from walking. She has loose ankles, knees, hips, wrists. Pretty much all her joints. She goes to physio once a month and we have to put her in a stand for an hour a day. She will be getting a tight suit for the lower half of her body soon.

She has just started going up on her knees but she's very wobbly.

If anyone has experience of this, is there anything else I can do to help her? I'm wondering about getting specialist gym equipment like you see in todder classes (where they have to clamber over things). Or lining up toys on the sofa to try to tempt her to reach up. Anything else I can do?

Thanks

Doodyanna Mon 02-Sep-13 21:39:18

My son wasn't walking by 18 months and was hypermobile, we were advised to buy a boot that extended up to cover the ankle (like kickers) to help him find his centre of gravity by keeping his ankles inline with his feet and knees and feel more confident to move and walk without holding on. Within 3 weeks he was walking then went onto insoles to keep his ankles inline, might be worth a try?

Birdies Tue 03-Sep-13 08:35:55

Thanks for replying. Unfortunately we've already got boots (I forgot to mention them) and she's been wearing them for months sad. They have helped her, but just not enough...

meandtheboys Tue 03-Sep-13 11:44:54

My DS2 is 20 month old and also has hypermobility. He sounds very similar to your DD. He can pull up to stand and is trying to walk on his knees this past week or two.

He didn't crawl til 15 months and really only pulled up and weight beared at around this time.

He has phyio once a week for 6 weeks then 6 weeks off, then another 6 week block of physio again. He i coming along and is getting stronger but is MILES away from walking independantly.

He also has medical support Pedro boots but he's not really any more stable in these to be honest. His main problem area seems to be his hips, although his ankles are definitely loser than they should be.

He struggles with his strength in his hips and core muscles to have any balance when he is stood. He can't stand without holding on to things but will walk for a fair amount of time when holding our hands.

It's a shame because he seems so very very frustrated by it. He whinges and moans a lot because he just can't do what he wants to do and it's very hard trying to make him do the physio because he hates it. He wants to be independant but doesn't want the physiotherapist faffing about with him and 'forcing' him. It's difficult to know what else to do. He is definitely improving but is pretty much only at the stage DS1 was at around 10 months old sad . I try not to compare them too often but DS2 is like a baby still whereas DS1 at 20 months old was a 'little boy' not a baby. It must be very frustrating for him.

Has your physio told you any exercises you can do at home? Ours has said to put him sitting on his little chair and encourage him to stand often and then sit down, reaching for toys to strengthen core muscles, high kneeling whilst incorporating it all into his play so he's not aware he's doing 'physio'. It seems to be helping.

Will your DD walk holding your hands? Does she have a pushalong trolley to help her step with?

She will get there eventually I'm sure but I do understand your worries.

meandtheboys Tue 03-Sep-13 11:49:26

Also our physiotherapist recommended soft play centres where they can climb and pull up without the worry of hurting themselves to get their confidence and strength up. We've only been a couple of times ( I hate soft play centres ) but DS2 does seem to enjoy it. DS1 also enjoys hurtling around the bigger kids section with DH while I stay in the toddler bit encouraging DS2 to reach and stand!

WeeLors Tue 03-Sep-13 13:47:01

My DS1 has hypermobility and didn't walk until 2yr 4mths. Unlike your DD though, his hips and knees weren't too bad (just his ankles) so he could cruise from about 1yr. Most of our tricks for helping him took advantage of him already cruising so might not help you any but for when you reach that stage we found lining up treats along the windowsill (blueberries, choc buttons) really encouraged him to walk back and forth along it (scoffing as he went). Also encouraging to climb up and down the stairs helped strengthen him too. We also purchased a toddler trampoline (one of those little ones with a handle) and that helped immensely. He used to bob up and down gently without actually jumping at first but the motion helped strengthen his joints. Could you maybe put your DD on one on her knees for now? She'll find it loads of fun and will be strengthening her trunk, hips and knees without realising, and then she could use it standing up when she's ready. Also, we found taking DS1 swimming helped loads, low impact but even just lolling about in the water once or twice a week improved his strength loads.

Hope that helps, she'll get there in the end, you wouldn't even know my DS1 had a problem now

Birdies Tue 03-Sep-13 17:58:11

Thanks everyone. No she's not able to walk holding our hands and even if we hold her under her arms she can't step forwards. So I think we have a long way to go.

Thanks for the advice smile We do have a trampoline. I think she will struggle but I guess we have to try anything. And soft play areas does sound like a good idea.

Actually the standing up from a chair idea sounds good too. She has a little chair so with help she could do that.

seaweed74 Tue 03-Sep-13 18:07:23

Hi. My dd1 is also hypermobile and has hypotonia too. The hypermobility affects all joints but worst in ankles. Dd rolled at 18 months, crawled at 19 months, learnt to walk/run on her knees around 2. She was very good at this , but couldn't stand! Fitted with Piedro boots at 2.3 years so she could stand but still nothing else. Finally at 2.6years fitted with AFO leg splints covering foot and upto but not covering knee. These were the key for our dd. Dd walked at 2.10years and at 3.8years back into Piedros, then at 4years first shoes from shoe shop! Still need supportive shoes or dd falls loads, but she's still getting stronger and progressing all the time.

We were recommended to try and go swimming as much as possible as this is great exercise without putting pressure on joints. Also children with hypermobility tire more easily than their peers. We definitely noticed dd's inability to do anything physical if she'd done loads the day before.

Hardest aspect for us was seeing her cousin (a year younger) running on the beach when my 2.7 year old could only sit in a buggy! However dd's lack of mobility didn't appear to bother her much and once she was knee walking she managed to join in at playgroup well enough with her peers.

All the best smile

Birdies Thu 05-Sep-13 08:05:08

Thanks seaweed I will ask her physio about the leg splints. I'm also now looking into swimming lessons for her smile

itsnothingoriginal Thu 05-Sep-13 18:59:05

My dd also has hypotonia and hypermobility so I completely understand the frustration! She did manage to walk at 20 months but had no standing balance due to the low tone in her hips and trunk. She was wobbly for a long time but is improving with time and practice.

Swimming is great exercise and the little trampoline with a handle helped a lot to build up strength. You could also look into horse riding in a year or so as is great for building up core strength. We did the standing up from sitting down repeatedly with a strong walker to pull up on - one of those wooden trolleys with a handle was good for this.

bishboschone Sat 07-Sep-13 18:30:54

Has she got a Kaye walker? My son is globally delayed and also 2 . He is hyper mobile too. He walls really really well with it. It took a long time but we are getting on really well with it .

k8thegr8 Sat 07-Sep-13 19:38:50

My friends little daughter has hyper mobility, hypotonia, global development delay of a unknown origin.

She was (is) basically one big flop. Pick her up, she's like a rag doll, limbs just hang. She's had physio once a week, and had the little kickers shoes, nd the standing frame which she used for a hour and half from a young age. She could not weight bare on her legs, they are tiny in proportion to her body size, she's nearly 3 now and is size 3-4 in shoes.

She would roll about every where, and old sit un supported by about 18-19 months. By about 28 months she would be in the crawl position, and eventually started crawling very slowly, with her hands in a fist. About a month after that, she started weight baring on her feet, and would walk holding on to your hands, although her legs would be in all directions, so still very unstable, and feet old be pointing all over the place.

She crawled about for a good few months (like a baby) then went through the cruising stage along furniture and was a lot more stable.

At the beginning of the summer holidays, she took her 1st steps ever on her own. And she's off!!! She's a little top heavy (always has been), but can now steady her self, she looks a little drunk when walking!

Developmentally she's still way behind think she said 12-15 months! But this is amazing! Doctors sais she will never walk or talk!!!

We're half way through fundraising to build her very own sensory room kitted out with all the stuff that help her strive in her own home! smile

bishboschone Sat 07-Sep-13 19:49:17

Wow that's a promising story .. My son has small feet and it's never occurred to me that wouldn't help.. Interesting .

Ablababla Sat 07-Sep-13 19:51:16

Sorry to crash the thread. But could anyone advise me how I would go about spotting hypermobility and getting a diagnosis? DS2 is 18 months old and won't bear his own weight at all. Health Vistor just says he's a bottom shuffler and not to worry but he does have family history of hyper mobility (me, I didn't move at all until 2) and I worry. Trying to talk to the GP just results in patronising smiles and a referral back to the HA. Not sure what I should do next.

bishboschone Sat 07-Sep-13 20:03:22

Ask your gp for a referral to a paediatrician or physio .

Wonderful story k8. It's stories like this which give me hope for my DS, 2.5, low tone, hypermobile, global delay of unknown cause. He is commando crawling very small distances, can sit himself up, but that's it so far.

OP, my DS does quite well weight bearing in his Piedros and a pair of leg gaiters. They are made of very stiff fabric with support rods inbuilt into them, and velcro wraps to hold them firm. They go the full length of his legs. They are quite old school and lots of physios defer to standing frames before considering gaiters, but in our experience the gaiters have been better because they promote 'active' standing rather than passive. He stands leaning against/over the sofa or a high footstool.

Does your little one have hydrotherapy? Ask for a referral from your physio. It's wonderful.

Abla if I were you I would politely but firmly request your GP writes an immediate referral to a developmental paediatrician. Is your DS delayed in any other ways or is it solely the weight bearing? You might do well to seek out a private paediatric physio to do an assessment of his abilities too and write you a report. Would give you some sound evidence to support your concerns.

k8thegr8 Sat 07-Sep-13 20:25:05

SHE is wonderful! She does something to prove the doctors wrong every day. She's a lovely little girl nothing ever phases her.

In the past two years ive got to know her she has completely changed.

She couldn't hack other people in her space, almost a sensory issue so touching her was a no go. We're just to "leave" her o to speak. Now on her terms she will allow other children (I look after twins) to touch and be in her space, she's in theirs more than they are in hers. They are 19 month so roughly her "age".

She can eat "normal" foods as she has learnt to chew and can feed her self ( or gets help if it's super yummy)

She can also say about 15-20 words. And repeats these all day every day. We don't think she processes what she says. Will repeat names like mine about 50 times a day without realising sometimes other times she knows it's me.

She doesn't play like a child would though, likes balls, and mobile phones. That's about it. Put her in the sensory room she goes to once a fortnight, and she's complete different!

She knows what she wants and is turning into such a lovely little girl.

k8thegr8 Sat 07-Sep-13 20:29:57

Also forgot to add, her low muscle tone is to the point where she can't smile and have eyes open at the same time. Although this is getting better smile

That's so wonderful to hear. She sounds smashing smile. Children can overcome so many shitty odds xx

Ablababla Sat 07-Sep-13 20:47:33

Thank you Starfish!

Birdies Sun 08-Sep-13 13:11:34

That is a great story thank you, and she sounds more like my DD1 with being like a rag doll etc (although she has literally just started doing a normal crawl now at 2 years old so we hope this is the start of her getting stronger).

ablab definitely just go to your gp and get referred. We have a pedeatrician anyway for other health stuff for her so it was spotted then. It's hard to describe but you can kind of tell if they are hypermoble by straightening the legs and they almost go beyond straight. And they often can sit in a w shape with legs bent back and to the side. But that's still a generalisation, best to get someone to look at him. It could also be his hips so worth asking if he could have a hip scan (just a simple x-ray) to rule that out.

curiousgeorgie Mon 09-Sep-13 07:49:31

My DD is hypermobile, and didn't crawl or anything until gone 2. She's going to be 3 in a couple of weeks and is now walking but not running / jumping etc and can't step down even the tiniest step.

She had Physio once a week rather than the once a month they offered us and I saw an immediate difference...

Hang in there smile it's horribly frustrating but she will walk eventually.

LongDivision Mon 09-Sep-13 14:27:15

curious, can I ask what you would do during your physio sessions? we go about once a month, and all that happens is that the physiotherapist asks about his progress, watches him move, recommends activities, and sets goals, but we don't actually DO anything at the appointment, iykwim. other people have mentioned that their children are tired after their physio appts, which make me think that we're missing something!

curiousgeorgie Mon 09-Sep-13 15:44:47

They have a three tier toy stacker which they ask her to get toys out of and put them back in, so she's bending and squatting in one place for a long time.

They lay out hoops and try to get her to step over them..

She walks with a pram / walker & sometimes a walking frame.

We sit on the floor and use a set of brushes (for hypersensitivity) to brush her skin all over, particularly her feet and hands.

She's coming on in leaps and bounds... I try to do it all at home too.

LongDivision Mon 09-Sep-13 17:26:07

thanks. this has motivated me to ask next time around to see if we can do something during the session.
i'm glad that you're seeing progress with all of the physio. the brushing is really interesting - i'd not heard of it before. we were recommended to do messy play and to play around with a lot of different textures, so perhaps that is similar.

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