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Writing hypermobile finger splints

(88 Posts)
zzzzz Sun 30-Dec-12 11:45:06

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!

sazale Fri 04-Jan-13 22:25:39

Niggles not nighles lol

sazale Fri 04-Jan-13 22:24:56

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 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!

sipper Fri 04-Jan-13 21:00:12

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!

Ineedmorepatience Fri 04-Jan-13 10:45:29

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.

PolterGoose Fri 04-Jan-13 10:36:32

Message withdrawn at poster's request.

zzzzz Fri 04-Jan-13 09:43:29

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.

madwomanintheattic Fri 04-Jan-13 03:58:39

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 wink)

mariammama Thu 03-Jan-13 16:39:59

Physio/OT for hands is quite specialised, but should be available on the NHS in most places. Is it worth getting advice about taping?

madwomanintheattic Thu 03-Jan-13 13:48:02

Mine have five Ieps between the three of them... grin

survivingwinter Thu 03-Jan-13 11:30:17

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 confused

sazale Thu 03-Jan-13 11:13:49

Service not device lol!

sazale Thu 03-Jan-13 11:12:59

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.

madwomanintheattic Thu 03-Jan-13 04:14:05

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... grin <oddballs>

They all have Ieps for everything. We are a very strange family. grin

survivingwinter Wed 02-Jan-13 22:55:08

my dd also has hypermobility due to brain damage and just wanted to second what was said above about how supportive seating can help with fine motor. we just got a chair through OT which frees up dd s arms as her core is weak. She can't hold a pen correctly and writes with her little finger primarily. IT says in long term will cause pain in the radial nerve (sp?)

zzzzz Tue 01-Jan-13 20:11:18

It's one of the things I took away from Thomas Sowells book "Einstein's Syndrome" (though I find him a little too "it's not ASD-ish" to take all he says seriously). I've read it in other studies. I do think it only really can only hold true if you dc's disability doesn't result from injury, but it makes sense from my experience.

Sowell recommends having your other children's IQ tested if it is hard to test your child with sn, and then arguing statistics, with IQ doubters.

The staff at ds's old school sometimes found it hard to understand. I think they pitched a couple of years below his chronological age. The problem for ds is he is very bright so although he appears to be able to muddle along, he actually is massively disabled by his language disorder and masks it to a point, the result is he appears daft and is bored.

sazale Tue 01-Jan-13 19:32:36

The vast majority of siblings are 5 to 10 IQ points different from each other. So if your other children are bright it is probably a good idea to assume your ds is.

I didn't know this. That's very interesting. Despite all her difficulties (ASD/SPD/Dyslexia/ demand avoidance/hypermobility/significant impairment in motor skills?ADHD traits) my dd left primary with 4b's accross the board with the school saying she could have done much better if she would just concentrate!! By the end of year 8 where she had been out of mainstream classes for 1 year and only been completing set work in the student support unit set by the teacher she had increased to a 6c in maths!!

When I mentioned that my ds was very intellegent to the SENCO she was very shocked!! They are such a secretive school it drives me mad ggrrr lol!

zzzzz Tue 01-Jan-13 19:29:52

While I am knackered most of the time, I have to admit the endless striving for more skills everyone else gains easily is not all bad. There is nothing more satisfying than when your carefully laid plans work. It is also really challengeing always having to think of another way of getting a new skill.

I will never be bored, probabley never have empty nest syndrome, and even if the rest of the world don't get it, I know these children are a gift.

sazale Tue 01-Jan-13 19:24:09

Thanks zzzzz,

I think I need to concentrate on 1 or 2 areas but as there is so much he needs it's hard to prioritise. It's going to have to be the reading and writing (or alternative forms of displaying his knowledge).

zzzzz Tue 01-Jan-13 17:20:47

The vast majority of siblings are 5 to 10 IQ points different from each other. So if your other children are bright it is probably a good idea to assume your ds is.

I rally sympathise with the tired child who needs major input on top of the school day. It is very difficult.

Holidays are obviously a good time and weekends. Make everything as stress free as possible at home (I know you do this anyway, you aree a Mummy). The truth is that children with sn have to work ten times as hard as other children. It is like having a very gifted child. If you'd given birth to an Olympic gymnast there would be endless extra training, special diets and equipment. Same thing just none of the applause! grin

This is a good syllabus

Scroll down to "language" which is what we would call literacy.

zzzzz Tue 01-Jan-13 16:43:50

Im out on phone but I think you shouldnt wait for help from school.

sazale Tue 01-Jan-13 15:21:01

Thanks zzzzz,

I'm doing alphabet arc and some other activities with him at home as guided by an independent SALT that I ended up getting involved as school just kept fobbing me off and nhs salt was only dealing with his speech sounds and no one was looking into the impact on his literacy. The problem is he's shattered by the time he gets home from school and doesn't want to do more activities so I have to find ways of doing them without him realising.

School have promised loads but are yet to deliver and CDC won't advise on social anxiety until they've decided what's causing it! In the meantime he's really struggling and hates school. As he's a rule follower and exceptionally well behaved he'll never cause them a problem. The OT has advised Ed Psych involvement in her report but I doubt that will happen.

I'm considering applying for a SA for him but I'm aware that there aren't many kids in our LA in KS1 with one.

I have a dd 14 with HFA (and other developmental difficulties) who I was constantly told would be fine (she is academically bright) so I'm very suspicious of school. I got a statement for my dd last year and she is now in special school.

It's the fobbing off of the things they say they're doing/gonna do but then don't. He's supposed to write with a felt tip but I know they make him use a pencil. His pencil grip that was provided by OT went missing and I said I'd replace it. The SENCO insisted I didn't that they would and whilst clearing his drawer out at Christmas noticed one that is not the right one.

The SENCO didn't know he was bright until I told her! My 11 year old nt son left Y6 this year with level 5a's across the board and ds5 appears much more bright than he was at the same age but he is on p levels but school won't tell me his exact levels!

I do wonder if I'm over reacting because of DD's difficulties but she missed out on early intervention and I'll never know if things could have been so different for her. I don't want to chance it a 2nd time.

Sorry for the long post and thanks for the info, it's greatly appreciated.

zzzzz Tue 01-Jan-13 13:14:10

sazale. A couple of ideas that might help.

Typing, BBC does "dance pad?" typing for free on line, which a friend swears by for her ASD/dyspraxia child. I will check the name and get back to you.

For writing I would try a Montessori solid alphabet (you can buy one or just make them on paper or tiles). Ds also loves leaping about on a big floor alphabet (nb try to find a lower case one). Start with word building, have a box with solid little toys in (eg small plastic dog, pig, hat, pin) vary materials and style if possible so collected from different sources is better. Choose a thing and then try to write the word. Take turns like a game or work alone.

I would recommend Montessori Read and Write by Lyne Lawrence as it has lots and lots of activities and games in order, so slowly adding skills.

I think you are right to persue this as the difference in people's perception of ds before and after literacy is quite marked.

From a Mummy point of view it is also another window into your little person.

sazale Tue 01-Jan-13 12:45:32

Thanks porridge, that sounds good.

I do want him to learn to write but the anxiety it causes him and the effort it takes are causing him barriers to accessing the curriculum. I'm trying to find alternate ways of him to display his knowledge as he's very intelligent. He can't communicate it verbally as he has social anxiety which manifests like selective mutism.

He can't write words/read independently yet due to his phonological processing difficulties so he's finding school very difficult indeed and I want to make it as easy as I can for him.

porridgelover Tue 01-Jan-13 09:09:40

Polter that aid looks really interesting! Thanks.

sazale this was recommended to me by an OT, though I havent got it yet (on to-do list).

sazale Tue 01-Jan-13 01:14:42

I'm thinking of getting DS 5 an alpha smart to use in school and teaching him to touch type!

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