Anyone with experience of hypermobility?

[misssmapp]

Both our boys struggle with handwriting. We took them to a handwriting club run by an OT today, and she thinks Ds1 (9) is hypermobile. Does anyone have any experience of this and what we can do to help him .

Thanks

hi, my ds is seeing an ot soon because he has problems with fine motor skills including hand writing so I will be watching this thread with interest. I hope you get some good advice. You must be worried about your dc.

My daughter has it mildly ( as do I apparently).
Doesn't really affect her day to day, although she does seem to fall over more than her friends and can " pull" various joints quite easily but she is fine within hours.
Took a lot to get a diagnosis though

Dd2 is hypermobile, shes 4. She is delayed in her gross motor skills and always has been, she falls over alot.

We have an appointment with a physiotherapist later in the month because the neurologist she saw thinks that she would benefit from boots. At school shes in a group focusing on both gross and fine motor skills but her writing is ok at the moment its always been the gross motor skills that shes had difficulty with.

Thanks everyone,
he has big issues with his handwriting and fine motor skills, although seems to manage fiddly pieces of lego allright!

Hopping green- who did you see to get a diagnosis? I am going to talk to the school to see if they can refer to an OT, is that the route you took?

Oh and it took along time to get a diagnosis, she was seeing orthopaedics for an abnormal gait for I think 2 years. They then referred to neurology and ut was the neurologist who diagnosed hypermobility and gross motor skill delay.

My dcs have eds hypermobility type. We have good support from the physios, OT and rheumatology consultant. We explained to the school that dcs get tired easily, suffer with pain and dislocations. Ds1 uses a special cushion and has a grip on his pen to help with handwriting as he gets pain.

HMSA have a lot of information on their website and a forum.

Both my children and myself are hypermobile to varying degrees and I have found the them very helpful.

Hedgehog- that sounds like ds1. He gets very tired writing, his hand gets hot, sweaty and he complains it hurts ( I must admit to thinking this was an excuse for not doing his work) He has tried diff pens before, and they havn't made that much difference, but he used one today that seemed to help.

I have heard about the cushions- do your dcs have a wedge one? Does it seem to help.

Sorry about all the questions- just trying to work out our next steps.

Thanks toasted, off to check that out

Both my kids are hyper mobile. My ds was diagnosed during reception, my dd as a baby (she's more severe).

Ds (7) has it mainly in his hands / wrists. It makes things like handwriting, doing up buttons, zips, tying shoelaces etc more difficult for him.

Ask for a referral to an ot. They can provide excercises to do (Lego is great), experiment with different pencil grips, types of pens, wrist supports etc. it's possible you ds may be allowed extra time / use a computer during exams.

It's really nothing to worry about though, they just have to learn to adapt. Please don't google it, you'll get hypermobility syndrome / eds, which is very different to hyper mobility in terms of severeness.

My DD has hypermobility in her hands, fingers and most joints - writing is pretty difficult for her as a result. An elastic band around the pencil grip can be helpful in the interim before you see an OT. They will try out lots of different grips and assess muscle tone in the hands to see what can be offered to help with the handwriting. They could also recommend that school obtains a laptop for extended pieces of work or for SATS etc.

Yes it is a wedge cushion that you inflate and the instability of it is meant to strengthen core muscles and be more comfortable, ds1 gets agonising back pains and stomach aches due to weak core muscles but the cushion has helped a lot. We got it from amazon.

I'm a hypermobile adult! I was finally diagnosed at 28, I have a score of 7/9 and have struggled with being clumsy and poor at writing and achy all my life.

Bonuses include being really bendy and having gross body party tricks.

Cons include the aches, the shite core strength and the dislocating and spraining and straining!!! I've had this all my life but it's nice to finally be able to name the cause!!!

Nothing's really changed for me except my physio has told me not to run as it was destroying my poor body!!! I was forced to push through the writing aches. 80's and no diagnosis.

I honest to god think that it was the best thing my mother ever did. I can manage pain, I'm able to solve problems that it presents. However I have lots of memories of writing thank you letters in years because my hand hurt so much.

My writing got less painful when I mastered the monkey bars.

I am hypermobile as is my DD.
She is also dyspraxic ( I've never been diagnosed, but fairly sure I am too)
For both of us handwriting was a huge issue at school. I remember being told to rub out every word in my exercise book as it was so messy. Even as I have got older I have found I have to handwrite notes, letters etc several times until I think they look readable. I can't write on a black/white board for fear of humiliation. I have made excuses for my handwriting all my life. Things have improved a bit as I have got older. The nerve pathways from brain to hand need supporting by stable muscles. In someone with dyspraxia or someone with hyper mobility syndrome, the muscles tend to be long and thin & the joints unstable. I was told my answer was to strengthen the muscles in my upper back, shoulders and arms & this in turn would support the nerve pathways, and this in turn would help the brain-hand connections. An OT told me this 20 years ago & I have exercised regularly since, and although not perfect my writing has improved. My DD still struggles, and has extra time etc for exams. ( that doesn't help, as her writing is just as bad if she has an extra 20 mins) she now uses a computer to do most of her exams.
Hyper mobility is a pain (literally ) joints hurt most days, it is something we have to live with, and manage. There are worse things of course, but it is one of those weird hidden disabilities, that can cause all sorts of issues.
I really hope you and your children get some good advice, I am sure things will have improved since I was at school. Certainly my DD gets more help than I did.
Wishing you all the best.

The main muscles controlling the hands are, apparently, actually in your arms... hence, when dealing with handwriting issues, you have to think a bit further than just the hands (and also accept that if you have overly stretchy tendons and ligaments, your hands will always be a bit difficult to stabilise for writing, because these are what are being pulled on by the muscles to control your hands). Physio, therefore, can be extremely helpful, as they understand how the muscles in the body are supposed to work and can give advice and exercises to build up strength holistically. To have good handwriting, you really need good core body strength, stable shoulders and hip girdle, etc, etc.... OTs can also help with advising on aids, eg, pencil grips, writing slopes, different types of pencil or pen, games and activities which can help.

My ds1 is hypermobile and the OT advice for him was rubbish. However, he had an excellent physio. What made the most difference for him, though, when it came to writing, was learning to play the piano...

Thanks everyone, some really god advice. We will be taking on many ideas and trying to get a referral to an OT and physio. Thanks again

Re diagnosis.
DD had gone to A&E a few times after " pulling" a limb and seeming unable to use it but within a day she was absolutely fine.
In Reception she went over on her ankle and I collected her, she said it didn't hurt so I didn't take her to the hospital straight away. She refused to put any weight on it so I took her that evening and turns out it was broken!!!
After 6 weeks of pot etc she kept going over on it and I kept getting called to school being told she was in a lot of pain, couldn't walk etc but by the time I got there she would have no more than a slight limp for a few hours.
We tried private physio and NHS physio, school nurse and 2 GP,s as I knew something wasn't right.
I was at the end of my tether when I made a final appointment to a GP in the practise who I knew specialised in paeds. We walked in and explained what was happening and she asked if I could put my hands flat on the floor and do a couple of other things - I was very confused!!
She asked DD if she could do them too and then said " she's hyper mobile, and so are you"
It explained a lot for me as well, hip issues when pg etc.
As I said above DD is fine and has no issues on a day to day basis, although she is a very mild case.

DD's core improved greatly when she mastered hula hooping. fun too.

we are probably EDS type 3 people in my family, I meet all the diagnostic criteria but was told they don't diagnose it in this area, DD1 certainly is extremely hypermobile except for her legs, DD2 is very hypermobile. DD1 gets problems, DD2 doesn't seem to yet.

I had no idea when I was growing up but then started getting terrible joint pains and dislocating ribs regularly as an adult (my mum is the same) and so started looking into it. I could still do the splits with no effort in my late 20s and I can still get my hands flat on the floor now at erm well a lot older than late 20s.

Physio told us to try and build DD's muscle strength to help support the overextension in her joints. still waiting for the report though that will suggest how we do this.

Do any of your DCs have any other related symptoms of hypermobility? I am hypermobile and have a lot of problems now with my joints. All of my DCs are hypermobile to a certain degree but my DS2 is very bendy. He has always had problems with constipation and recently been having tummy pains which I think is heartburn. He also has very poor hand writing and has always struggled with zips and small things, which I thought was just him being lazy! Just wondering if any of these things are linked before I take him to the doc, who will hopefully listen!

My son has very lose stools which we think is related to his hypermobility. Both of us need to wee more often. My DD who is more hypermobile than either of us shows no symptoms, she is a gymnast though so for her it's been beneficial. Me and my DS both get tired quickly, achy joints, dreadful handwriting, but luckily no dislocations. DS is having piano lessons to improve his handwriting.

the poor handwriting and struggling with zips and buttons etc is Def a problem for my hyper moblie kids. an ot can really help though. interesting to hear about piano lessons be in useful. I'm not sure my sons fingers would be strong enough to press the keys though if that makes sense? will have to look into it.

mumtogremlins - yes all the people in my family with hypermobility have joint pain (DD not so much but then I didn't tend to at that age, she does get back ache and ankle pain though) and IBS, she is on gaviscon for heartburn and reflux.

the other thing we get is weakness, so like going to push a door open we might find we actually don't have the strength in our wrists to do it. some days it is fine and other days it isn't.

whether the dr will listen is a different matter. we saw a paediatrician privately for DD who agreed with the reflux but nothing else, we see a physio about something else separately and within 2 minutes she has commented on the hypermobility and after doing tests on DD she agreed with me when I said it was more like EDS type 3 with everyone in the family (none of us officially diagnoses) than 'normal' hypermobility. But as I say the rheumatologists said they don't diagnoses EDS type 3 or hypermobility and told me they would 'just say it is a form of rheumatoid arthritis even though there is no positive blood result and symptoms don't match but that is all it can be as EDS type 3 is too rare'.....

DD is seeing a different paed next week for something else so I am going to take a report from the physio just to ask out of curiosity. it doesn't change anything to have a dr say that is what it is but I do think it is helpful for us to know for sure.