Hyper mobility(18 Posts)
Does have anybody have a child or know much about hyper mobility? My 3.5 year old went to a physio appointment this week after concerns about how steady he is in feet and they have said he has this. He's a bad sleeper and this is reason for this.
Just wondering what people's experiences are and how it affects once start school.
Hi there is some good information here.
There are different grades of hypermobility, my daughter has it in her knees but isn't symptomatic. We have recently seen discharged by the physiotherapist, but can ask again for a referral if she starts having pains or new symptoms. She wasn't diagnosed until she was 7-8.
From her diagnosis I discovered I have it in my wrists and have never really has any major problems.
My DD has hypermobility. She was late to walk (2 years) and is still v deliberate and careful when walking. Not yet running, jumping. We've been given in-soles to try in her shoes to help support her feet. Similar age to you so no experience of school I'm afraid. Hopefully someone with experience in an older child will be along soon
Ds was diagnosed when he was 7. He has it in his knees, shoulders, elbows, wrists and fingers. He has low muscle tone also which we work on with core strength exercises. He also gets tired very quickly, especially when writing so has needed handwriting intervention and frequent breaks. We do hand exercises to try to help. He struggles to ride a bike as he doesn't have much strength in his legs but managed all by himself at the weekend which is great!
We were told he is at a high risk of dislocation but no problems so far. Even though he throws himself around and jumps off play equipment etc.
Can I ask how you all went about getting a diagnosis/seeing a physio? I took my DD to the doctors aged 4 when her nursery pointed out that she falls over more than her friends. GP said she may well be hypermobile but that nothing needs doing.
A school friend wrote a piece on hypermobility for her blog ( https://twentyandtravellingsite.wordpress.com/2017/01/15/the-invisible-illness-hypermobility-syndrome ) - I know this probably isn't very relevant as she's 20/21 now but she touches on her experiences at school and is a good example of how the condition doesn't necessarily have to hold you back (from what I see on FB she's very into her salsa dancing and is currently living, teaching and travelling in Spain)!!
Feline: some medical professionals are dismissive of the condition as many people go there whole lives not knowing they suffer from it (me) as we don't suffer with all the symptoms. My DD was referred to the muscosketetal clinic, she saw a physiotherapist.
Thank you everyone. His preschool did the referral for physio and podiatry after the discussed with councils SEN team (we had benn discussing speech delay initially). We have podiatry soon for insoles or if he needs boots made.
He hasn't been given exercises but we can contact back if feel we need help. We have to try and watch how he sits and correct that.
My DD has it (and suspect my littlest may do too) but she is very active and very strong. She has only recently been diagnosed (she's 10) because of joint pains. She's been given daily exercises to do to strengthen leg muscles, and we're waiting on the orthotics referral. The physio said the more active she can be, the better because strong muscles will help protect her joints. She already does 6 hours+ of sports a week.
My DS nearly 8 was diagnosed with it last year.
He has is mainly from his hips upwards. Like other we have to daily exercises to strengthen his core muscles as when he sits at his desk at school his back is a 'S' shape, as he is also left handed, so he crosses his center line.
We have struggled to find a pen/pencil that he can write with as he can not put enough pressure all the time.
He does a lot of exercise at school and suffers a lot of pain while doing it, but he will not quit as he wants to be like everyone else.
As a side question are any of your children really hot or suffer when they get hot. My DS is always hot and when he over heats he will projectile vomit. Neither of my other children suffer from this or overheat.
@Clutterbugsmum - has Ehlers-Danlos syndrome (EDS) been mentioned to you? There is some dispute in diagnosis with some thinking that all hypermobility is a form of EDS but some not. I have heard of people with EDS suffering more in the heat though.
In terms of pens and pencils, has your ds tried and angled writing desk? My ds is very hypermobile in his hands and an angled desk was a big help although now (aged 17) he avoids manual writing as much as possible and uses a computer instead.
I have severe hypermobility (EDS) and physio is good. Things like writing grips etc help too, and Stabilo do an ergonomic pen that is quite useful for hypermobile hands. The website linked above has good information.
frozentinkerbelle1 you say you have to watch how your DS sits and correct it. How does he sit? My DD does "W sitting" - with feet splayed out either side - looks really uncomfortable but she hates sitting any other way. I read somewhere that it's not good for them to sit like that and can be an indicator of hypermobility but I'm not sure whether it's worth trying to stop her doing it.
Yes exactly like that - couldn't think of how to describe until you said the w. We are trying to get him to either kneel with both feet underneath him or feet out straight in front of him. Think it's to do with his hips. We are all new to it. X
Thanks. I might try a bit harder to stop her sitting like that then. Her nursery pointed it out as a possible problem, as well as the fact she falls over a fair bit but the GP wasn't too worried. What symptoms was your DS showing?
How he was unsteady on feet, just generally how he ran and sat was behind his age expected him to be steady. Now looking back makes sense. Also he sometimes wakes in night and can be awake for hours. Now know that most like to be in pain.
Hypermobility/Ehlers Danlos varies enormously in terms of which joints are affected and what other areas of life are affected.
We have it in my family (usually genetic). My mother is generally weak-jointed and a little unsteady; has never been able to lift anything heavy and has been prone to aches and pains throughout her life, but is clever with her hands. She suffers from anxiety, which is sometimes co-morbid with EDS.
I have had pains in my wrists and finger joints throughout life and do walk slightly crookedly (flat footed), but have not had much pain from walking. I am also slightly dyspraxic/find it difficult to quite know what my arms and hands are doing. Poor proprioception is common with EDS.
Dd has had severe back, ankle, hip pain and spent part of her childhood using a wheelchair as unable to walk from pain. She had extremely poor proprioception and kept falling as a child. Also suffers from severe anxiety. But has got a lot stronger through exercise and dancing. She suffers from cold, which seems to bring on her joint pains. But is now able to hold down a job which involves being on her feet all day.
Ds found it difficult to do anything with his hands, got pain holding a pen, had some back ache but far less than dd. Is now strong and fit and goes to the gym. Proprioception rather poor but improved with exercise.
thanks frozentinkerbelle1. DD is a lot like that. She often manages to fall over her own feet when she's just standing still and seems to trip over most times when she runs. Doesn't wake at night though thankfully. Sorry your DS is in pain. I hope the podiatry/physio is able to help with that.
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