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Walking/hyper mobility

(25 Posts)
Stampingduck Tue 17-Nov-15 14:21:16

Hoping you can help! My lo is nearly 3 and is extra bendy and a toe walker. She wears stability shoes and has bundles of energy. The problem lately is she just won't walk anywhere! She will climb around all day in the house but once outside where she has to hold your hand/wear reins/stay within a few metres she just won't walk. She first starts to walk completely abnormally for a few metres but then throws herself to the floor and won't move. If you lift her up she lets her legs go to jelly and drops full force to her knees. At the minute she just sits in the stroller but i don't know what to do to encourage her to walk. The Physio says there's no reason she'd be in pain, so it must be behavioural and has said she'll contact her Paed but in the meantime I'm desperate for advice. She used to be a pest walking and would fall all the time but now she refuses it's so tricky to do anything. today at lunch I thought she'd walk inside but as soon as I lifted her out the stroller she fell to the floor and had a tantrum. Anyone any experience/advice? Thanks!

elliejjtiny Tue 17-Nov-15 19:04:25

My 7 year old does similar to this when he's tired. He doesn't know how to pace himself so he goes from walking normally and then suddenly drops and can't walk anymore. He has a wheelchair which we take with us everywhere so we can lift him off the floor and put him in.

Hedgyhoggy Tue 17-Nov-15 20:50:07

I have 3 children, one with hyper mobility and they have all been terrible walkers when out. Think it might be due to me being a clingy mother and/or living in middle of know where which makes them a bit overwhelmed when out and about. Whatever the reason I am super strong from carrying 3 kids around. Just think some children (and their mothers) are just made that way. My nearly 3 year old rarely goes in pushchair because brother with LD with behavioural problems goes in it. she is improving but I've had to be super positive when she does walk and I set her goals, like walk to that tree and we'll say hello to that squirrel that's hiding in the leaves or that kind of thing, distraction more than actual reward). What does she do when you walk to a play area? Is she reluctant to get out of pushchair then? Good luck I know how frustrating it is

Stampingduck Fri 20-Nov-15 23:02:27

Thanks for your replies, not sure why it didn't notify me!
She never walks at a normal speed, she sprints like a rocket and ends up face first on the floor. So pacing herself could definitely be an issue. She is globally delayed (I'd say she's roughly at an 18m level at 31m) so doesn't really grasp the concept of walk to the park and be rewarded/distracted just yet. If I point something out ahead she just won't take notice of it, so wouldn't walk towards it it swim. Also, if the park is outside she will play on the equipment but that means the same slide 20 times, and will refuse to walk to the other side to use the swings! I usually carry her but her behaviour can be quite explosive and she'll hit and pull my hair so I'd rather she walk sometimes. She's still young so I'm guessing it will change, but I'm so afraid she's in pain when I'm insisting she walks. I spoke with everyone I can for advice and they suggest just walking away, but I can't because she will get up and sprint the other way (although this hasn't happened since refusal peaked, but it's a risk as she has no danger awareness) or hurt herself intentionally on the floor. She's happy to get out of the pushchair mostly, but when you try to put her down she brings her knees up and doesn't let go! We have an appointment for splints soon, either day or night ones, so I don't know if they will be able to help. I just hate feeling so helpless and not knowing what's wrong

zzzzz Sat 21-Nov-15 16:54:19

Try a hoody and over the ankle boots

Stampingduck Sat 21-Nov-15 21:11:52

A hoody? As in to hold onto her with? She hates it if you try to hold her clothes and with the amount she falls I wouldn't want to risk her hurting herself while I've got hold of the hood :/
She wears Piedro stability boots already

zzzzz Sat 21-Nov-15 21:19:01

it sounds to me like she finds open spaces/outside disorientating. a hoody looks unremarkable but can cut out quite a lot of light (side and sky) and muffle sound. Some people find a heavy rucksack helps too.

Stampingduck Sun 22-Nov-15 22:11:11

Ah I get you! Slight chuckle at my assumption of dragging her along by it. She's had an assessment by camhs for sensory issues and they said she's a ok but I'd argue otherwise (hates the sponge at bath time, terrified of the hair dryer, gets freaked out sometimes by touch). I'll give it a go but so far she won't tolerate anything on her head :/ she swings her pony tail around all the time when it comes loose, presumably because it's annoying her. Also the issue that she has microcephaly so I don't have a hoody that wouldn't drown her smile thanks again for the replies. I've totally outed myself on this post though haven't I! Never mind, desperate times and all that

hello573 Sun 20-Dec-15 01:54:12

Just a thought.... could she be refusing to walk as a way of avoiding pain from falling over?

My ds has hypermobility, and for a long time acted like a limpet when we were outside.... In my opinion, I was his safety net from getting hurt.

Ineedapiginblanket Sun 20-Dec-15 10:07:59

I am not disrespting your physio but how does she know your Dd is not in pain when she walks?

Dd3 has hypermobile joints she is often in pain now but as a toddler she never said "My knee hurts!"

Just a thought!

Ineedapiginblanket Sun 20-Dec-15 10:09:27

Ooops I am not spelling either! blush


Stampingduck Sun 20-Dec-15 20:20:25

That's one of my biggest concerns, she doesn't know. There's nothing visibly wrong, and everything seems to move in the right direction so they've said she's fine. I do wonder about the fear of falling over but when she refuses she intentionally throws herself to the ground so surely can't be that afraid. It's really getting to me lately. She still won't walk, but because she's only a little over 2.5 no one cares. She just sits in the buggy. The only place we go is to soft play as otherwise she doesn't get any exercise. I had a thought the other day that maybe her feet are cold? Sounds silly but they are always white/blue and freezing. I can't walk on cold feet, it hurts! She wasn't as bad in the summer, although still an issue. I guess I just wait and hope it gets better. I'm not taking her to school in a buggy come September! A lot can change in 9 months so I hope she is able to walk some more sad

Ineedapiginblanket Sun 20-Dec-15 22:03:07

Firstly dont worry about september, it is ages away and if she did have to go in the buggy so what! All children develop at different rates!

My Dd3 was still napping in the day at 4.6! She is hypermobile and has Asd and sensory processing disorder. She was undiagnosed at pre school age but I knew she was different to my other Dd's, pre school was exhausting for her!

Do you take her swimming? That is great exercise and will strengthen her muscles.

She is still very little, she may just need more time.

Good luck flowers

Stampingduck Mon 21-Dec-15 20:17:01

I'm sure no one would mind, but I'd feel a little sad she'd be the one kid in a buggy.
We are hoping to take her swimming again but she aspirated liquid (has thickened liquids) so I need to check with her Paed if she is able to go! She loves to put her face in the water so I'm wary of secondary drowning!

Toffeelatteplease Tue 22-Dec-15 18:21:56

Hypermobility can be incredibly painful as your muscles are working overtime to steady the ligaments. You are also more prone to falls and sprains (in severe cases dislocation) which can cause injury that is also painful. If they are sensory issues watch out for issues registering pain also.

If her legs go to jelly I would question whether that is deliberate or whether that is to do with muscle tone and fatigue. Piedro boots are fantastic and absolutely a neccessity for stability they can be difficult for children who get fatigue. DS uses his wheelchair for getting around and saved his energy for the bits he wanted to do (in your DDs case going down the slide).

Soft play is easier because the floor is usually flatter with less unexpected changes of surface. Therefore way easier to negotiate for children with stability and propioception difficulties. In DS' case It was also softer if you fall and nicer to take a bit of a lay down on if you get tired. If you are looking for outside play areas look for play equipment with big wide walkways (not narrow), slopes, flatter surfaces. If she is slow or worried about walking this means other children can pass her easier and she isn't rushed

To start with you need a new physio. When I was in your position (physio wanting to discharge it's behavioral), I got a private physio and ot report. It was worth their wait in gold. I suspect you also need an OT trained in sensory integration.

Without meaning to bother you i suspect some form or wheeled transportation may feature for a while yet.... When your DD is nearing (about 6 months) being to big for buggy she may well need referral to wheelchair services. Don't wait because these take time. It is certainly a question I would be asking a (good) physio.

Toffeelatteplease Tue 22-Dec-15 18:35:09

The running not walking... It takes more effort to do something slow and with control.

Stampingduck Wed 23-Dec-15 22:34:34

Thanks for your reply. I really appreciate your input. My gut is she is genuinely in pain. We went out today and she was so excited to play with her friends. She walked a few steps, stumbled and immediately wanted back in her buggy. She stayed in it through lunch and for an hour or so after and then played happily for half an hour. On the way home she just refused to lift her feet and seemed genuinely exhausted. I do wonder if she'll need a wheelchair some day but I really can't see her being given one.
I'm tempted to go private but they've assured me she has normal tone and everything is ok I feel like I'm looking for problems that may not be there, iykwim.
She's so so angry at the minute too. Her head butting has gone from one bash and a cry to repeatedly smacking her head off of things and then hitting herself and biting herself. I hate not knowing what's wrong

Toffeelatteplease Thu 24-Dec-15 08:37:07

The first NHS physio gave me a hug and told me "there there it is hard being a mum you do worry about everything" whilst telling me there was nothing at all wrong and everything I was saying was entirely normal development. It was absolute bollocks.

DS ended up in with an extensive physio program carried out by his one to one at school, that was after six months daily physio set up be a private physio at home.

But it took two private physio reports (one just physio £150, one a private 3 day multi disciplinary school assessment £500 roughly) and the nhs consultant telling her off before she finally excused herself from the case.

Sometimes Often they very badly get it wrong. And the first sign to me is not accepting hypermobile joints cause pain.

You very much need a multidisciplinary assessment. On the NHS you can ask for referral to Newcommen Centre in London (they have also are awesome), have a chat with your consultant especially if you get on well with him (sooner rather than later). There is about a 3 or 4 month wait.
Otherwise I would definitely go private.

Whatever you do you need OT involved to figure out whether the self harming is a sensory thing. What the heck are CAMHS doing with the self harming?

Any suggestion of ASD?

Toffeelatteplease Thu 24-Dec-15 09:24:30

The hoodie thing. From her perspective if it is sensory issues it won't be a bad thing if if is big. The idea is it is a subtle way of reducing noise input but if you can pull it forward visual input as well. The bigger it is, the further forward you can pull it.

If you excuse the analogy it's like putting blinkers on a horse. It enables the child to focus just on what they what to look at but also enables them to lose the support when they don't need it and put it back up when they do.

Sunglasses with large plastic sides is another way of achieving the same effect for visual input (doesn't impact sound as well though)

Stampingduck Thu 24-Dec-15 19:10:07

I don't think we could afford to go private sadly, and I'm sure it's not as bad I am making it out. At least I hope not.
I found a letter on her file from 1 dr to the Physio from about a year ago that read 'please look at this little girls legs. I have checked and there is nothing wrong but mum has been on the internet.' So I imagine I will have to fight for everything.
Cyps did an observation on her and noted she needs constant oral stimulation and suggested a few things such as giving her a toothbrush. When I reminded them she's a climber and has already been to a&e for mouth injuries they suggested perhaps give it to her when she's sitting still. Which is never. Helpful. They said the self harming would be self limiting as her communication improves. They've discharged us which tbh I'm happy with as they said she's too young.
I did try a hoody but she gets really cross with anything near her head/hair.
I did Google ASD a couple of times but I think she doesn't really have enough red flags. I wish I could stop her eating/sucking her hair though. She's constipated this week and all that's coming out is bloody hair! Rank.
We are back at the consultant at the end of January/February hopefully so I'm going to go with a list of questions. She's nearly 3 so I'm not sure how long they can blame being 2. She is slowly getting worse as her communication improves. I hate having to wait until they are proved wrong before they will act!

Toffeelatteplease Sat 26-Dec-15 07:43:17

A toothbrush?!?! shock WTF? No no no.

That's very wrong something like this much better and safer

You need movicol for the constipation.
I'm agog at the advice about the biting. If it is as I suspect oral stimulation and I'm guess maybe also proprioceptive issues, it would mean communication has nothing to do with it and she desperately needs occupational therapy to do some work we her. If they believe it is communication have they done some work with you with pecs or sent you along to a Makaton course. At the very least that should have prompted a referral to speech and language therapy.

(Proprioception is about knowing the position of your body in relation to your environment. So if I close my eyes I know where my hand is, that it is still connected to me and where it will be if I move it. If it is not working very well this things are not a definite. Sometimes the biting is done to increase the sensation in the arm so when you feel the pain you know it is still attached to you. If that is the case you would need a programme of occupational therapy done by a therapist with experience of sensory integration)

Please please please chat to your doctor about Dr Gillian bairds team at the Newcommen Centre at Guys and St Thomas' they are NHS and they are awesome. Although if it is the doctor who wrote that in your notes bypass him and go to your GP or put in a call to the team yourself.

Stampingduck Sat 26-Dec-15 09:41:44

Thanks again! What you write makes so much sense. Especially the biting her arm to increase the sensation. Similarly she has really weak fingers and when she stumbles unless you're holding her arm she falls. If you hold her hand she slips through yours and falls and then she starts to bite her hands while she cries.
The CYPS person was a trained OT, but we haven't got an OT as it wasn't deemed necessary. I got her a couple of chew toys and she seems to like a dummy every now and again too.
I will ring the GP for some movicol, thanks.
I will definitely ask about the referral but I highly doubt they will help. She presents as a delayed, happy child. It's only when you live with her you start to see the issues. Nursery have dealt with a few but they're nothing like at home. She's had a hard life to date so I wonder if there's trauma there too as an adopted kid.
I need to mention sleep to the doctor too. As an experiment I want her to wake naturally today rather than me wake her. It's 9.40 and she's still asleep. She went to bed at 7.30 yesterday. She's awake a lot at night but she just lays there lately. Probably not important but I wonder if she's just too exhausted for everything lately.
Thanks again, it's so great to have someone to talk to. I don't have any friends with kids with similar needs here.
I really need to name change after this thread!! Worth outing myself for some decent advice though smile

Toffeelatteplease Sat 26-Dec-15 10:39:41

Stampy I seriously think you have had some shocking bad care. There is so much that can and should be being done.

From what you have said I think there is some serious work speech and language, physio and ot should be doing.

In the meantime have a look at PECS (picture exchange) and Makaton which really can make a big difference. Especially at your DDs age. Have a look at some of the website here . I mention this website because the lady who runs it is super brilliant at listening to what your problem is and interpretating that to the resources you need. There is so much on that website, have a look at something like this to start with

Keep posting as there are so many fantastic posters here. But happy for you to PM me if I can help at all

Stampingduck Sat 26-Dec-15 20:39:57

What I've written isn't even the half of it. We've had 1 hell of a year!!
I forgot to say SALT said she wasn't a candidate for PECS when I asked about it. They said they will review her when she turns 3 in a few months.
Physio have assigned us to 6 monthly assessment clinics. We found a charity that offer conductive education and they were happy to work with her so she is getting some input. I've asked a few times about OT and been told it wasn't necessary for her. We've been doing makaton with her and thankfully she adores mr tumble so we watch it all day. We've been on the waiting list for makaton through SALT for over a year now! Well, they say we're on the list, but who knows?!
We have had progress with her orthotics at least as after 2 months with the wrong size shoes were waiting for some new ones!
I just hope 2016 is a better year. I feel like I should start being more insistent but it's hard when I don't know what to insist! I see big problems but professionals probably don't see them. The special needs world is new to me so I can appreciate her problems are far less than some kids, but for her they affect her so I think she deserves as much support as can be offered. I hate the 'watch and wait' approach sometimes

BlackeyedShepherdsbringsheep Wed 30-Dec-15 01:15:39

it turns out that dd is in pain when she walks and always has been. she knew no different though. only when she was old enough to know that other people did not hurt when they walked and that she did, was she able to tell us.

dd was still in a buggy well into being three. came home from nursery in teh buggy if we needed to walk. (otherwise in that big motorised buggy with a petrol driven internal combustion engine..)

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