Here some suggested organisations that offer expert advice on SN.
Writing hypermobile finger splints(88 Posts)
Ds has hypermobile middle knuckle joints in each of his fingers and probably very loose connection across the knuckle joints. They cause him a lot of pain and he finds writing difficult. If I support his hand he writes surprisingly well. Soft pens and slippery surfaces help too.
I wonder if any of you have tried splints or supports. I was thinking something like this
I'm worried about the level of pain he experiences and if damage is being caused long term. I would also love him to be able to write unaided, not least because it looks lik I am doing the writing IYKWIM and he definitely is!
Best pen by far is fatty white board marker as it makes a good mark for little pressure.
Felt tips work well too.
What would be fabulous is something computer mouse sized with a wrist shaped dent to lay his hand on with fingers poking out the front. Then he could glide across the paper and write much longer. If it could be soft and warm so much the better.
At my local hospital we have a specialist hypermobility physio although we have only met him a couple of times.
He checked that Dd3 had been given the correct exercises, tbh i felt that he lacked understanding of her ASD and as usual I got the blame for her slow progress and lack of cooperation.
zzzzz the waiting times for OT are horrific. We struck really lucky when Dd3 got referred because there was only one community Paed in the area at the time as the others had left/retired, this meant that hardly anyone was being referred. Great news for getting to see an OT but pretty rubbish for getting a diagnosis.
Writing on the whiteboard is really good for shoulder stability zzzzz, so long as he isnt resting his elbow on his body or anything else.
It is on our very long list of exercises
I'm a bit intrigued now. Do you mind if I PM?
PolterGoose wow what a brilliant looking place! You have given me the most brilliant idea.
This might be of interest to those of you with hypermobility.
Thanks porrige, Dd3 has never been seen by a rheumatologist although I am considering getting her a referral as my niece and my mum both have immune system disorders and I have read that there could be a link.
I really want her to be seen by the same proff who sees my niece so am going to ask her to talk to him next time she goes. I do worry about Dd3 because like zzzzz's Ds she doesnt interpret pain well.
She also gets really bad post viral fatigue everytime she is ill, she seems to get ill less often than the other Dd's but when she does, she gets totally wiped out. I do worry about her
Can you see a cranial chiropractor (one that uses a technique called SOT) as they will look at resolving any retained infant reflexes and also neurological issues that can be related to hypermobility. I am not a cc myself so excuse my poor description but I have experience of children who have been helped with hypermob issues (for info, in case any confusion, cranial chiro is different to cranial osteo).
(Also, am trying to recall some Vitamin K and gut flora connection with hypermobility. Will post if the info comes back to me! But could google Vit K deficiency and also take probiotics as from my hazy memory i think gut flora is relevant to vit k levels which in turn are relevant to hypermob...)
Sipper I don't know what half of that means! What are retained infant reflexes? What neurological issues related to hypermobility?
I don't know what chiro or osteo are.
I will google.
Aren't the neurological issues related to the lack of collagen affecting grey matter or something along those lines (I vaguely remember maybe reading a study on this)? Causing depression?
And the gut issue is related again to the lack of collagen and causes IBS?
I have hypermobile hips and elbows. I think my grey matter is ok though?
Ds and I appear to have normal bowels too.
You guys are freaking me out slightly!
You need to start chasing the OT referral tbh.
Lycra splinting is used with some success, dd2 also found a pencil weight useful in some situations (she is extremely hypermobile and her joints sublux when she holds a pen). You can also try wrist weights, writing slope, seat wedge, more supportive seating (dd2 actually had pelvic supports and a waist belt with specialist seating).
But really, all this is pie in the sky stuff. He needs an OT assessment (preferably with a joint physio assessment so that they can look at his whole body whilst he is concentrating on the fine motor stuff). The OT will also be able to suggest specialist cutlery, different pencil grips, (or just big fat triangular pencils) and actually have a look at what he is doing.
I would honestly steer clear of trying to home help with specialist designed equipment at this stage - if he hasn't even got as far as the OT, it's unlikely that cerebra will take the project on - they like to have reports from current therapists to determine needs to be met that can't be met through traditional routes - and you have yet to explore the vast amount of kit available for kids in ds's situation. (That isn't to say that your idea is a bad one - but in practise, most kids just get permission to use an actual mouse, once the handwriting stuff gets given up on. Dd2 does most of her work electronically now - and tbh it makes more sense as this is the way they transition later in education anyway.
Dd2 has hypermobility because of her brain damage lol. Same with the retained reflexes.
But it is entirely possible to have hypermobility without a neurological cause. . We tried chiro. It was interesting, but not really definitive.
She isn't depressed, either. and has perfectly functional bowels.
I think I will chase OT in the new year. To be honest he uses mouse, tablet, old fashioned solid alphabet etc. I was just blown away by his writing yesterday with hand over hand support. He is HE so we can do as much or as little as we like really, and I would like him to write clearly and I'd like it not to hurt.
Cerebra look interesting. What a fantastic place. I'm very interested to see what equipment there already is.
I assumed that not ever case of hypermobility was identical, but was replying to sipper's mention of gut issues. The nhs website discusses stomach problems here with hypermobility;
And here's an abstract from a study looking at hypermobility and grey matter;
catching thank you for the links. Ds doesn't have the other related issues as far as I can tell. I can say his finger joints (middle knuckle of each finger) are hypermobile because I can see them, and see the associated problems. I don't see much evidence of anything more.
ZZZZ I would agree that you need to chase that OT, without any shadow of a doubt DS2's wonderful OT's (sensory &motor) have had the most impact out of all the professionals he has come in to contact with.
They just see the child from a different point of view, look at the whoe child and spot things everyone else has dismissed or overlooked.
Tiny changes to seating, postural support can make such a huge difference to functional skills and fine motor stuff.
Can you tell I love our OT's
madwoman I wasn't thinking of cerebra....I was someone else before I was sn-Mum with a mission, and I think I know someone who might help and make me something.
Mum, I'm not sure that it would help though, really. (I mean, in a practical context he might find it easier, but getting school to agree to non-standard routes, therapies and adaptive devices prior to any assessment might end up as more problematic - and 7 is an age where this stuff becomes more noticeable in peer context. Schools should be very used to dealing with children who are struggling fine motor wise at this age - and an externally sourced adaptive advice might be counter productive in terms of promoting development at this age - when it is very common to have writing issues.
It isn't to say he won't need adaptive equipment, and yours might be the v thing, patented and a success story alter on, but that probably school will expect a more traditional therapy route to attempt to build on residual ability, rather than potentially weaken the control further by using an adaptive mouse type affair.
I would have to be very convinced that dd2 was unable to progress due to her disability before giving up - but it is a huge tightrope walk. We've had to make so many decisions between providing support knowing that it will effectively weaken chances of normal development, or remove support, making life harder in the short term, with the hope that in the long term less support (and I mean support in a physical sense) will strengthen muscle, improve tone, and mean that she is more physically able. They aren't easy decisions. The OT was pretty convinced at four that she would be a long term keyboard user, but at 7 we were still plugging away with pencil work (completely unproductively, I might add ).
Yy, thanks for links - am aware of many reasons for differences in muscle tone - dd2 has cerebral palsy due to brain damage, and I have two other non neuro typical immediate family members, and friends with EDS. I was just laughing that zzzz was concerned about hypermobility and everyone was suggesting nerve and gut issues, and even depression.
Was just really making the opposite point for context, which is probably more likely in statistical terms.
I am school! In that ds is home schooled, so looking odd ( possibley not really avoidable) and not being allowed to use it are not really a problem.
At the moment he is quite uninterested in writing, but I think making it easier and doing a lot of different things (whiteboard vert and horizontal, chalk board, felt tips, solid alphabet, typing, iPad) makes it more fun.
I just wondered if anyone else had any experience. Seems everyone is very anti splinting which in itself is interesting.
Ds1 found learning to play the piano the best thing he ever did for improving his hand strength. He went from barely being able to exert enough pressure to make a mark with anything other than a felt tip pen, unable to grip to pull up his own trousers, unable to play one note on the piano without other fingers getting in the way, unable to manipulate playdough, etc, to having pretty good handwriting, being able to write for extended periods and, of course, being able to play the piano rather well!!! Finding an activity your ds enjoys so much he is willing to work really hard at it can make all the difference and the piano has the benefit that the louder you press, the louder the note, so you can hear the musical effect of greater or lesser pressure on the keys, making it rewarding to experiment with changes in pressure and movement. You also don't need to be visually artistic to enjoy playing the piano - ds1 hated playdough and drawing because he hated what he produced from it, so finding physical activities which produced beautiful sounds rather than visual effects really worked for him.
By opting for splints now, you are possibly opting a little bit too early to give up on finding a means of improving the symptoms without extra support, which is probably why you are getting all sorts of alternative suggestions.
Now piano might work. I wonder if I can find a teacher with sn experience.
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