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!
Dd2 (whose disability does result from injury) tests 20 points higher than Ds, and 10 points higher than dd1. Ds's FSIQ is hampered by his own disability which doesn't result from injury though... <oddballs>
They all have Ieps for everything. We are a very strange family.
We are a very strange family too, madwoman ha ha!
The OT never went to see him in school to see if he needs any adaptations etc. They haven't even checked about his core tone etc affecting his writing, only his hands.
I've just had him referred out of area to rheumatology so fingers crossed they're OT will be better but as out of area I'm not sure they'll visit his school.
I'm considering paying for a private OT as he has some sensory issues and there is no nhs ot device anywhere near here that deals with sensory.
that's strange sazale - core strength was the first thing our OT checked for during dd s assessment.
both my kids have an iep too but dd (with brain injury) for physical difficulties only and ds (no brain injury) for learning difficulties
Mine have five Ieps between the three of them...
Regular paediatric OT will have more experience in hypermobility than a unit specialising in adult rehab tbh - and they are usually v experienced in issues relating to pre, emerging and improving handwriting (including running handwriting classes for kids struggling, which will include lots of exercises designed to strengthen and improve function.) taping is a short term measure during injury and initial recovery - have never seen it used as a long term aid for hypermobility (have 9 years of experience with six different paediatric ot's in three countries lol based in a mixture of specialist paediatric development centres, special schools, hospital clinics and school based...)
Would be interested if you have any child development links that recommend it though - I would have thought it would be counter- productive from a developmental pov, but possibly functional? I assume it isn't routinely used by paed ot's as they are routinely used to promote development in the first instance? (Rather than functionality! Which I know is weird, but it took 9 years before dd2 was introduced to a button holer )
Can I ask a side hypermobile question?
Do all of you/your children experience pain in your bendy joints? Ds is very protective of his hands, but he can't tell me much detail.
I have bendy joints (but not hands) but they don't hurt at all, on the other hand I have had quite a bit of trouble with what they think might be Rheumatoid Arthritis historically. I seem to have managed to pull both my achilles tendons this week, which is focusing the mind (grrrrrr). I had a Rheumatologist before the children, but I can't really get to the Dr now, so I work on a mixture of over the counter stuff and denial (this plan may not work for much longer).
I suppose I'm worried there's more to all of this than I have been thinking. I've been distracted by dd's issues and language and endless school hassle.
Ds was complaining of leg pain at night for ages before we started the assessment process, I'd not really believed him but had administered Calpol just in case. When he started the OT assessments she picked up on his bendy joints and referred to physio who assessed and found him to be hypermobile everywhere except elbows. Hence the pain, I felt absolutely awful that I hadn't really believed him. He does get leg pain if he goes walking on hard ground but seems to be okay with rural walking Even though his hands are ridiculously bendy he doesn't get pain in them.
My 'story' is that as a child I was forever spraining my ankles and wrists, started getting really bad arm and leg pain which completely immobilised me at times. I went through months (maybe years, I have a very poor memory of my childhood) of tests, nothing ever found, it was awful, had lots of blood taken which was always problematic and agonisingly painful, now realise this is related to hypermobility I think. Eventually saw a consultant who said it was because of the way I sat, in a sort of reverse cross legged position, a bit froggy. I started sitting better and pain did reduce but I have always had frequent sprains and pains.
I've always had hand pain when writing for long, recently doing exams again and struggled. I haven't been dx hypermobile but it is obvious to me. I can sprain my own ankle by twirling it and wear support bandages frequently. I now realise that the sitting position I adopted is common in hm children because it aids the proprioceptive sense by increasing feedback, so the sitting was the result of the hm rather than causing the problems IMO. Also now know that pain tends to worsen during growth spurts (and puberty?) so that may account for mine being largely written off as growing pains. Not sure how much was recognised back in the 70s either.
I'm pretty sure it is possible to have hm joints an have no, some or lots of pain. I understand it can also affect healing, scarring and, in my case, blood taking and anaesthetic injections.
Dd3 twists her joints regularly, usually when playing but recently she hurt her shoulder rolling over in bed. I thought she had dislocated it by the screaming but luckily she hadnt.
She gets pain in her hands when writing and her ankles used to twist all the time before she had orthotics.
I am about to try to get a rheumatology referral as she has never been seen and I have some concerns.
Hi zzzzz sorry, my earlier post wasn't intended to confuse or alarm. I'll try and make more sense this time around!
I can't give advice on the devices, splints etc so am not any use on the managing of things on that front, but thought it might be useful to share some thoughts about looking at whether the prob can be resolved - and then no more managing, yay!
As chiropractic treatment deals with neurological pathways it is definitely worth trying for hypermob as it is often linked to muscle weakness.
Help improve the nervous system and the neurological connections and muscle strength and hyper mob can be affected.
You mention other areas also associated with neuro pathways (speech) so it could really be worth a go.
The most relevant chiropractor to see would be someone who practises SOT (a specific type of chiropractic technique).
If there is a global hypermob (I.e. whole body), then possible vitamin k deficiency is also worth addressing.
Hope that all makes more sense then when I first tried to explain earlier in the thread! Also hope the aids and splints etc that people have suggested are of help.
For finding the root cause and trying to improve the hypermob itself I can personally vouch for SOT chiropractic as have family member who does it and has improved things for a lot of children - handwriting ability included. Best wishes and happy 2013!
Both DS 5 and dd 14 have pain in there joints and I know they got it from me and I have a lot of stiffness in my joints now (worse in winter) and had pain as a teen.
It's amazing how much hypermobility is linked to other issues like bowel and bladder.it explains all the nighles I have and the tiredness I've felt ever since I can remember.
Apparently you can hypermobility without pain but it only becomes hypermobility syndrome when you have pain.
I think my DS 12 nt has hypermobile but he doesn't have pain (touch wood)! My sister is dx'd with HMS, my neice is about to be, my other 2 sisters are hypermobile as is my mother!
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