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Original poster

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

51 replies

Birdies · 02/09/2013 21:15

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

OP posts:
curiousgeorgie · 09/09/2013 23:59

Longdivision - messy play freaked her out like nothing I'd ever seen before. And it wasn't even her touching it!! I put my hand in a bowl of shaving foam to show her and she threw the first ever tantrum of her life... I'd never had to leave anywhere before that day!

The brushing definitely helped for the hypersensitivity... Particularly with food. She recently stopped gagging at yoghurt which is a massive breakthrough Grin

Original poster
Birdies · 10/09/2013 16:15

Is anyone still there?! Just read the posts about messy play. Is there some sort of link between being hypermobile and sensitive to messy play? I didn't even mention that in my first post but my DD gags also when food touches her hands so is very sensitive to that kind of thing as well and we now have a plan of how to try to help her.

I looked at a Kaye walker online but she can't hold herself up at all yet so not sure it would work for her.

OP posts:
bishboschone · 10/09/2013 16:49

Birdies .. To be fair my ds could hold himself up when he got it but he has come on leaps and bounds with it so I would definitely consider it for the future . It may be worth getting one and having it around for her to get used to .

Sunisshining12 · 28/05/2018 17:18

Sorry, I know this thread is super super old, I’d love to hear how all of these children are now? My 16mo is like a newborn, completely immobile and I feel like my world has fallen apart

pigpoglet · 28/05/2018 17:33

@Sunisshining12 have you got a paed or geneticist ? It's very very hard at the beginning but you do get used to it . My son is coming up to 7 and can walk and run but has pretty severe learning difficulties . He does however enjoy life and does a lot of 'normal ' things . Have you got much support IRL?

Sunisshining12 · 28/05/2018 17:45

Thanks for the reply pigpoglet. We are under a Paed who will re assess in 3 months. Had a blood test and mri, both clear. Not sure about geneticist? May I ask what sort of age your son hit his mile stones, and at what sort of age did you become aware of the learning difficulties.

I’m finding it hard to deal with and understand, I must sound like a terrible mother but this isn’t how I imagined my baby/life to be. I’ve become jealous and angry at other Mums who’s kids walk, which I know is irrational and obsurd.

The thing I’m struggling with the most is that nobody is telling me if he will ever walk. And when. I know there is no crystal ball but I need some sort of idea.

Did you have much physio, any other therapy’s? I’ve just posted on the SN thread. I try to implement physio daily, he screams and screams and puts so much energy into crying. Then I get upset and give up. That’s terrible isn’t it

pigpoglet · 28/05/2018 17:50

You are not a terrible mother , we all feel like that ( well I do ) and my heart will never heal and my bag of guilt ( even though I know it's not my fault I chose to have him) gets bigger everyday .
I kind of knew from day one but was dismissed by doctors as being paranoid because he was prem as well .
I think you need to allow yourself to accept this is the way it is now and your son won't have a typical life . They don't catch up and it annoys me that doctors allow you false hope . I'd have much rather they were honest with me .
Have they sent his bloods for testing it's probably genetics , be aware even if it comes back clear it probably is still genetic it's just the medicine isn't quite perfected yet and genetics is so new .
Have you heard of Swan ? It's a charity for us folks and there are surprisingly more of us than you would realise .

pigpoglet · 28/05/2018 17:52

Oh and he is still way off a lot of milestones . He crawled at 12 months and walked at 2.11 . He still can't really talk much and is going to a special school for the start of year 3 after 3 years at ms with support .
My best advice to you is work on getting an EHCp , you will need it for extra funding for Pre school and most definitely for school.
What area are you in?

Sunisshining12 · 28/05/2018 17:53

Thanks, I’ll look it up.

What’s frustrating me is the Drs aren’t telling me anything. No diagnosis. No advice about what the future may bring.

What sort of age did you son sit, crawl, walk etc? Many thanks I’ll have a look at swan, not heard of it.

pigpoglet · 28/05/2018 17:56

The truth is they don't know , sometimes these children don't walk or even sit but you have to keep an open mind and keep trying . I was determined my son would walk and pushed him so much with a walker and physio And it's paid off but those first 3 years were very very long . I use to dream he had walked and woke up to the reality that he couldn't . It's heartbreaking .

pigpoglet · 28/05/2018 17:57

www.undiagnosed.org.uk/

pigpoglet · 28/05/2018 17:59

We dealt with it by expecting the worst possible scenario . We moved to a better bigger house to accommodate hoists and lifts when he was 2 and it can still accommodate a annexe so we have a plan in place either way . He is walking and is very well but with unknown genetics who knows what the future holds . I know it's frightening but I promise it does get easier as you learn to accept the curveball life has thrown you .

Sunisshining12 · 28/05/2018 21:03

Thanks pig, I know I sound dramatic but I feel like someone has died! I should be grateful he is wonderful and I am lucky to have it, but the uncertainty is eating me up alive.

My DH doesn’t understand at all, my parents aren’t around much & in laws are very elderly so I am quite alone.

I have to put DS into nursery now which is another worry. Will they do any/of the physio? Or is he just going to be left in a chair.

What sort of walker did you use and from what age? What physio did you find useful. We’ve been doing tummy time for over a year with 0 improvement.

pigpoglet · 29/05/2018 05:56

You are grieving and that is perfectly normal . I felt exactly the same when my son was that age . I couldn't deal with any social media because I had 5 friends with the same age babies and seeing them all nailing their milestones was devastating . And at that point I still had hope for a normal life so I do get it .
You will need to find the right nursery , visit them and explain the situation , if they are anything but supportive move on . We had to do this with nurseries and schools but did found amazing versions of each who supported us .
The EHCp will give extra funding so I would look into that .
Also dla and carers allowance may mean you don't need to go back to work.

pigpoglet · 29/05/2018 05:59

My son had a Kaye walker for a year between 1.11 and 2.11 when he walked independently. Your son will need to be able to support himself though with this sort of device . There are others available though with support .
Have you got portage ? They can be a great support .
Why doesn't your husband get it ? Does he not realise that 16 month old children should be doing more or do you not discuss it ? It's such an awful situation but I promise you it gets easier to deal with as time goes on .
Please pm me if you prefer x

pigpoglet · 31/05/2018 14:45

@Sunisshining12 are you ok? I'm not sure how to pm you but just wanted to check in on you . I know what a hideous time you are having .

Sunisshining12 · 31/05/2018 15:50

Thanks pigpoglet, up and down through out the day! I posted over on the SN forum as I know this is a zombie thread. Thanks

KSimonds84 · 11/06/2020 22:35

Any update on this? My son is 2 years 8 months and exactly the same (hyper mobile and not able to walk Etc)

summerinthecity22 · 14/06/2020 13:59

@KSimonds84 hi - there might be a thread over in SN Children worth following.

Are they pulling to stand?

KSimonds84 · 15/06/2020 10:25

Thanks. I’m new to this site so I’ll have a look. No he isn’t pulling to stand. He see’s a physio

Hypermobility · 04/05/2022 07:27

Hi, what you said almost 10 years ago, is what my LO is experiencing now. Can u give me an update of how things progresse?
My LO is 24 months and only crawls and bum shuffles

Albans · 28/07/2022 15:56

Hi there.
know this is an old thread but any updates on these late walkers? My daughter is 25 months. Not walking and is hyper mobile with low normal tone. It's so so stressful and I am getting very depressed about it. Was told mri was normal and that she will walk but could be as late at 3 or 4 years old to do so. It's devastating as she's such a smart girl but I'm worried she will fall behind as she can't play with her peers in the same way. Would love to hear some success stories xx

gunnersgold · 28/07/2022 20:28

@Albans get her a walking frame !
Has she been checked for any other issues , is she hitting developmental milestones ?

Albans · 28/07/2022 21:58

She is hitting all other milestone. Is super smart but just hasn't walked yet. She had a brain haemorrhage as a newborn but have ruled out cerebral palsy we got her a standing frame to help her with weight bearing. It will helping.

Tasmintamanna · 13/12/2023 20:32

My son have same symptoms please can you contact me I need your advice