Hypermobility and propriocpetion problems

[debs40]

DS has AS and a Sensory Processing Disorder.

While we were going through the interminable diagnostic process, a referral to Paediatric Physio was suggested but the Physio dept thought there was no need as he could just as easily build up his core strength with day to day activities.

We were referred to OT which is ongoing.

The OT has given us suggestions for improving proprioception which basically include using weighted products in class. No suggestions about improving core stability/strength etc. I have asked her whether we need a referral to physio but she has not replied.

DS is 7 and about to enter Y3. He is very hypermobile in all his joints (sit comfortably with his feet behind his head ). He is also constantly on the move. He cannot sit still for a minute. He slouches,lolls, leans on people and objects and falls to the floor. This happens in school too and is becoming very noticeable.

He also finds it very difficult to write. He manages, but with some pain and his writing is reallly not improving and is holding him back.

I saw my own physio recently. She helped me after a car accident several years ago. I am slightly hypermobile and it has caused me no end of joint pain problems. I mentioned DS to her and, although she has no expertise with children, she was shocked that we had been given the brush off and said she would try and come up with some suggestions.

I think the proprioception aspect is being focused on by the OT without consideration of the cause - the hypermobility and low muscle tone.

I would really like someone with some expertise to see him.

Any suggestions? I understand there is a centre at GOSH but I don't know whether a GP could refer out of the area.

Any advice welcomed as it is really a very big problem for him and no one seems to know what to do.

i dont know much about hypermobility but google 'retained reflexes' and if those things sound familair, find a sensorytrained OT and get exercises to helpintegrate hte reflexes - will probably hep with balance etc

Is there any evidence to support the idea of 'retained reflexes'?

from personal experience - friends son did it and was very benficial - more coordinated, less cross etc. abiyt 15 nubs if exercises every day

there was a thread on it on here a few weeks ago about it - all good.

I have hypermobility as does my DD. She is only 2.3 so this is not causing too many problems yet. So I don't have much experience that is of any use, but I do have a couple of suggestions with the writing issue. Is your DS trying to hold a pencil with the traditional pincer grip (i.e. between thumb and forefinger)? This is very difficult if you have low grip strength. I went through so much grief in primary school over my awful writing. I remember one teacher slapping me on the back of my legs for not writing properly.

I now hold a pen using my thumb and 3 fingers. So the pen actually rests on my ring finger, with the tips of my other fingers around the pen. I find this reduces pain and makes control much easier.

Triangular pencils or pencil grips (see here) can also help alot.

Have you asked your GP to refer direst to GOS. I know the unit and I am sure they take direct GP referrals although its a tertiary hospital-you do not have to live in the "catchment" for GOS as they effectively take national referrals. Their rhematology dept and specialist physio do week long residential courses and do intensive physio and hydrotherapy for the children...but to be referred you wd have to prove your DC has hypermobility syndrome as opposed to having just hypermobile joints common to many kids, esp ASD ones. There is the Beighton scale that you can google and look at and it also depends on pain levels.

Proprioception has been effectively sorted for my DS using reflex inhibition-he will always be hypermobile but has far better balance and co-ordination than prior to this treatment. There is not much peer reviwed scientifically sound evidence for this though so may demand a leap of faith but hey, it worked for us. Core stability can be strengthened by a good OT using a gym ball.
HTH

DEBS- you could be describing dd1, she has a dx of AS and has bendy and week joints, low muscle tone and struggles to sit still. We spoke to the school nurse who was useless (gp said get a referral through the nurse), school signed her up to some movement class at school (similar to ot), dd couldn't do the excersizes, couldnt stand on one leg etc.., SENCO tried to refer her to OT and got no reply. I then took dd1 back to the GP and refussed to leeve without a referral, she has now been referred back to the pead which diagnosed her with AS and we are waiting for an appointment.

At first i thought i was 'dyspraxia' but now i'm not sure, she complains of pain in her feet and hips, she cant push open a door and struggles with steps but her writing is ok (not great but ok) and her balance is ok.

Both my ds and I have Ehlers Danlos Hypermobile type, which has symptoms similar to Benign Joint Hypermobility, and experts say is probably the same thing, that there is just a spectrum of severity. Your GP can do a direct referral to GOSH, they have a hypermobility clinic, or you coulod see a Paediatric Rhuematologist if you have one in your area, who could make the initial assessment and refer you on to GOSH for more support if necessary. If you google hypermobility you will find a number of inteeting articles to read especially ones by Professor Grahame, and Professor Bird, Hypermobility.org is one I think, arthritis research ukl have some info too. There are basically tweo diagnosis scales called Brighton and Beighton, both have their weaknesses, but if used by people who know what they are doing, along with clinical examination, familial history etc, you can get a good diagnosis. After that you need to be in the regular care of a rheumatologist, physio is essential in my opinion, and has made a huge difference to my ds, most all all you need to know how to protect his joints, what to do if the subluxate or disloacte so you can prevent the kind of damage that can happen, and hopefully the damage that I now have. I have started an EDS hypermobility thread, if I can help any more. Good Luck

DD has low tone in core muscles and hypermobility. We've had physio since her birth but OT actually been more helpful with exercises to directly address her core strength.

TBH she has come on hugely since we got her a trampoline a month or so ago - I can't believe what a difference it is making to her balance. We will also be starting horseriding as soon as she is old enough as is excellent for core strength and co-ordination.

Does your DS have any special seating at school? Physio mentioned we will be pushing for extra funding for seating when DD starts school next year as makes a big difference to writing if core/trunk is supported properly.

Thanks everyone for your really helpful messages.

I will ask the GP about a direct referral to GOSH for the hypermobility clinic. Would the GP be able to do the necessary diagnosis scales for hypermobility syndrome? He is incredibly bendy and floppy but he is also very poor at communicating distress or pain so it is hard to know if his floppiness causes him discomfort. I have asked about his hand and he tells me it hurts but thought that was the same for everyone!

I can ask the GP to find out how a referral can be made and take it from there I suppose.

DS does trampolining once a week and we could do with getting a trampoline in the garden too. I have the number for Riding for the Disabled and was going to give that a go too but he can be so nervy about these things.

OT has really struggled with seating suggestions for school. Move'n'sit cushion doesn't help. She has suggested weighted blankets etc which do but can only be used intermittently. I also think that is addressing the symptom and not the cause.

Thanks for the tips on retained reflexes. I will look into it. Will an OT do that?

I was thinking of trying to get a referral to the Dyscovery Centre but I would have to pay privately as there is no way I would get an excpetional funding application through our PCT. The experts here all think they're managing it. But what I'm left with is dozens of suggested exercises on pencil grip and manipulation and a weighted blanket!

Debs.. Ds2 has a wobble cushion .. It's a bit different from a sit n move.. And might be worth a go. He also uses a gym ball.. Sits on it to watch tv and does his excersises on it too.
Horse riding is fab.. And so are martial arts :) tai chi (sp) might be worth a look at if he gets a bit worried :)

with writing .. We use a big blob of blue tack... Sounds a bit weird.. But ds found it better than the grips :)

Better to get a rheumatologist to do the brighton beighton scales for diagnosis, no disrespect to your gp, but you could google and print out a copy for him/her so he/she can have a look and see what you are talking about.If you go to GOSH online, you can find a document which you can print out with guidance for medics to make a successful referral to GOSH. If you can't find it, let me know and I will post a link for you.

Thanks. If you have the link for GOSH that would be really helpful. My GP has been quite helpful to date but it would be good to have something to show her about why I want the referral. Does the child need to be in pain to get help with it or is it sufficient that it is significantly affecting their daily life?

Here is the link to the site. There must be a strong arguement for referral if it is significantly affecting daily life, surely?

www.ich.ucl.ac.uk/website/gosh/clinicalservices/Rheumatology/Homepage/Referral_Guidelines0.pdf

Thnaks alot!! That's fab. I will have a read and talk to the GP.

Good Luck

we have a really good o.t. who works with d.s on these issues. with regard to writing, ds (4.5) had no interest in trying to use a pencil or paintbrush - probably because he didn't have the strength to do it. we were given some nice exercises to do with really firm plasticine eg. ds would roll the plasticine and then make a "crocodile" by pinching along the top, with either his fingers or a peg. any kind of play with a peg seemed to be good for building up his pincer grip.

he is now much more interested in drawing and has a firmer grip on the pencil.