Hypermobile Fingers in DC, any experiences or advice please?

[willchooseanamelater]

Hi,

My DD is 5 and is hypermobile in most of her joints. She sees a physio once a year to monitor her ankles and knees.

Her fingers though are my biggest concern. They have always been really bendy. As a baby/toddler she was unable to push buttons on interactive books etc as her fingers would just fold back on themselves.

She seems to cope ok with most things. She's been able to use scissors etc quite well from an early age, but she struggles to hold her pencil correctly despite having tried every pencil grip I can find, as her fingers and thumbs just collapse on themselves. She's now starting to notice that her writing is bigger / less tidy than many of her peers.

She also struggles to maintain enough pressure when brushing her teeth and mostly ends up chewing on her brush to 'brush' them which drives me nuts!

She also still finds it hard to wipe her bottom well and I'm wondering of her bendy fingers make this difficult, as her 3 year old sister is much more consistent at this.

Cutlery is another problem, as is sitting up straight on an adult sized chair without lolling about all over the place.

So wondered of anyone has any experience of DC's with hypermobile fingers and how I can get some help or advice for her? Would it be an OT she needs to see? Will they be able to 'do' anything like give us exercises to strengthen her fingers etc?

Does anyone know about waiting times etc for referrals? I feel bad as I'd sort of assumed she'd grow out of it but it's only now that I write it all down that I can see how much it is affecting her.

Thanks for reading

She needs to practice her fine motor skills, an OT will be able to help. Things like picking up coins and putting in a pot etc

Also you need to go and speak to the school, they need to start helping her with her writing.

She is probably pushing too hard with her pencil as well. This is because she needs to 'feel' a response from the paper iyswim - putting a mouse mat, carpet underlay or something similar will teach her that pushing too hard makes her go through the paper. This also seemed to help my DS with achy fingers as he stopped pressing so hard.

Cutlery needs to be as thick as possible and round, a set of those plastic handled ones worked for DS. A move & sit cushion worked amazingly for us at dinner time and they should have some at school. I bought mine from ebay.

I'm afraid she wont grow out of it, she will live with it. As she gets older and strengthens her joints the symptoms should get easier but I don't think it will go away.

Hi, my DS (12) is hypermobile but not to your daughter's extent. There is a special needs thread on here, and if you search you'll find lots of posts about hypermobility. There is also a support group which can offer help, guidance/advice -sorry I don't have the link, but it's easy to find if you google. Plus you will find information on the Mumsnet special needs threads.

I can't offer any advice, just point you in other directions.

I understand that pilates is very good for building core strength, if that's possible or suitable at her age.

As previous poster said, your DC will not grow out of this, and there is often a family link, so you may need to think about other children in the family too. You will definitely need physic and OT, but you already know that.

You will also find that she will tire more easily than other children her age, as hyper mobility is an extra strain on the joints, just to do everyday activity. My DS has been told to build core strength (more exercise and pilates, to build up strength), take Vitamin D supplement (because he had aches and pains which are apparently linked to lack of Vit D) and get plenty of rest, so proper sleep. Tiredness for my DS leads to illness, so that's something for you to be aware of too.

Good luck, and I hope you find the help you need asap.

Thanks for the replies,

I have spoken to school about it, most recently at parent's evening a few months ago. They are aware of her hypermobile legs/ankles and that she tires quickly in PE/forest school etc. They didn't suggest any practical measures to help her but did say that although she copes reasonable well at the moment, as she progresses through Y1 and does more sustained writing etc she may find her awkward pencil hold more of a problem. Maybe I should ask for a meeting with the SENCO to see if there's anything they can do to help.

I'll have a look for a move and sit cushion, sounds like it could be a big help.

I think her core strength is pretty poor so maybe pilates etc would be an idea. DD2 is also hypermobile, needed Piedro boots to support her ankles when learning to walk and even now has the most amazingly flexible hips but she seems to carry herself in a completely different way. The physio was surprised she has such a good gait when walking given her bendiness, whereas DD1 moves like a sack of spuds, bless her.

So I guess I need to see the GP for a referral? Fingers crossed it won't take too long.

If it's a long waiting list does anyone know of any good private paediatric OT's in Oxfordshire area? Feel like I've let DD down by leaving it so long to get some help so am really keen to get the ball rolling ASAP.

Thanks

The boys and iI all have hypermobile fingers. Can't really add anything to what CB said. When joints are so bendy, it's important to strengthen the muscles around them in order to provide stability. DS1's biggest issue is applying too much pressure when he writes, which causes him to fatigue very quickly. One of the things OT recommended is a chunky grip pen or pencil. Also practice drawing lines and shapes so gently that they leave no trace when rubbed out.

OT is the place to go for fine motor. You can self refer in some areas. You may even be seen within a year or so, in some areas. If you have a few hundred pound to spare, a private OT may prove useful. You may get referred on to PT to deal with gross motor issues and core stability, though.

Ds (5.11) has hypermobility in his hands (still waiting out a potential diagnosis of dyspraxia) and has had some success with fine motor skill building activities at home---we keep a hand gym of sorts around for him with PlayDoh, clockwork toys, rubberbands, Lego, tweezers, etc. he has an IEP at schol where he gets 10 min a day of ot type activities with the ta. He has had decent progress but his handwriting is awful. Just awful.

In some areas, a physio can refer on to an OT. If you still on the physio's books, could you ring him/her and ask ? Might be quicker than going back through your GP.

I have bendy fingers too. What really helped was changing the way I held the pen to what's called 'Monks Grip' or various other names (pen goes between 2nd and 3rd fingers instead). It relieves the pressure from my thumb hugely, which I was clasping very tightly to make up for its bendiness.

My OT also recommended pens with easy-flow ink, so that I wouldn't press as hard.

Lots of good advice here - we went to GP, got referral to NHS OT, and eventually went private to an upper limb specialist for basically just theraputty exercises to strengthen fingers. We also got some splints for his fingers which have helped enormously (they stop the fingers from swan-necking, IYKWIM - i.e. they support the proximal interphalangeal joint, AKA the PIP joint, so it doesn't bend in the wrong direction under a normal amount of stress like writing or pressing the key on a musical instrument). They are sadly quite dear - about £10 per splint, but we only needed them on his little fingers and fourth fingers.

I'm sure the exercises that the NHS OT recommended would have been just as effective, but in my experience we are more likely to actually follow a regime if we're paying for the medical advice that recommends it. That's because we're rather stupid.

What has been useful is the NHS report saying that DS should be allowed extra time for written exams to allow for excess fatiguing in his hands. For us, the timing has been good because the report is dated 2012 and he'll sit independent school entrance exams in January 2014 - most schools say that the report has to be dated within last two years.

NHS OT, being more general than upper limb specialist, recommended a 0 much wider group of exercises to assist core stability.

AGHH - when I said lots of good advice here, I meant everyone else's, not mine! I just meant I'm not going to repeat what's already been said by other people!

was it in London that you went private MrsSteptoe?

I had theraputty exercises too, and splint but might need more splints now that things have changed, from somewhere that really knows hands/fingers. Not sure NHS would help as it's only mild.

Yes - I'll pm you