Lazy... Hypermobility

[CinnamonPretzel]

Hi All
We've been told DD is double jointed with some symptoms of hypermobilty and will be advised by OT in their report to be referred to a specialist in that area ( can't remember what they are called )
I'm being lazy in that I don't want to trawl through pages of forum posts just yet (so many DC tests are taking an emotional toll) so wondered if anyone can offer some quick details?

Does HM affect self esteem, confidence and cause anxiety issues if left undetected until 10yrs? (DD has a few other coordination issues and sensitivity to touch)
Can you offer any good sites, books to read up on or should we wait until confirmation from referral?

Thanks in advance

Yes, hypermobile people are statistically more prone to anxiety - whether there's a genetic link or it's purely caused by the fact that hypermobility can in some people cause chronic pain, make you tire more easily and make you appear clumsy and find some physical things difficult, is not entirely clear. I suspect a bit of both, or a genetic link in some people (particularly since it's more common in people with dyspraxia and aspergers, for example, who are more prone to anxiety whether or not they are hypermobile) and just a result of the pain and lack of understanding for others. And of course it can affect self esteem, as people tend to have little patience or understanding of the possible effects of the condition. I think the Hypermobility Syndrome Association has a website with some information on it, if your dd has just been told so far that she has hypermobility (there are also more specific connective tissue disorders that can cause hypermobility). Hypermobile people are often more prone to problems like irritable bowel syndrome, may be more prone to osteoporosis and osteoarthritis, etc. However, some people go through life being quite markedly hypermobile without any major issues. There are an awful lot of different types of connective tissue in the body, so this may be because different people are therefore affected at different levels - whether just by being a bit "double jointed" or by having effects operating on internal organs and the whole way the body works.

Thanks Rabbit. So really we should just wait for the OT report, get referral and also see what Paed suggests when we eventually get the appointment (that ones for the anxiety and temper tantrums)
Thanks :)

Hi Cinnamon. Who has dx dd for you? I ask because double jointed is not a medical term, and I wonder if it is an OT who has said it to you. Benign Joint Hypermobility Syndrome, or BJHS and Ehlers Danlos Syndrome Hypermobile type are two "hypermobility" medical conditions, to which your OT may be referring. All joint hypermobility comes under the care of a Rheumatologist, in some areas you get Paediatric rheumies, and in others a rheumie who hs a special interest in Connective Tissues Disorders may pick up your dd's case. Self esteem can indeed suffer as a reuslt of BJHS or EDS, as can issues with coordination.

I have EDS as does my ds. My ds is very severely affected, and is in a lot of pain. Why don't you pop over to the EDS/Hypermobility thread here on special needs there are lots of mums with different expereinces around hypermobility.

In the meantime I will put some links on here for you, which you might find interesting or helpful. Just have to put dd2 into bed first! Bad mummy emoticon needed

Thanks Sparkle. Yes we've just had the OT review; mentioned DD had very flexible joints, and with complaints of pains in the evening in her legs suggested it would be an idea to refer her. I saw the PT write hypermobile on the paperwork but won't get the report until after Christmas, probably. (although might be sooner)

DD has trouble with throwing/catching, lifting body while on back, touch sensitivity but generally good with other mobility test such as balance, jumping etc.

I think I might have a brief read up but wait until I have the report. There seems to be a lot of pain and tiredness issues I'm reading on and that worries me on top of DS too. It's just one thing after another and not something I was expecting at all

rheumatology.oxfordjournals.org/content/40/5/485.full

www.jaoa.org/content/106/9/531.full

www.hypermobility.org/diagnosis.php

www.cafamily.org.uk/medicalinformation/conditions/azlistings/h56_2.html?print=all

www.cafamily.org.uk/Direct/e21.html

www.medicinenet.com/ehlers-danlos_syndrome/article.htm

www.ehlers-danlos.org/index.php?option=com_content&task=view&id=3

Hope they help.

Thanks :)
Just started reading other posts... Podiatrist is what she said first off, for the flat feet.

My ds is quite affected by EDS. He suffers from dislocations and subluxations (partial dislocations) of all major joints, and in his spine. He has spinal invlovedment which is relatively rare. He also has trouble with gross motor skills, throwing catching, etc. His core muscle strength is very poor making it difficult for instamce for him to lift up off the floor when on his back, as you describe. Evening pains, and the coordination issues you have described do indeed sound like classic hypermobility syndrome. None of the articles I have linked you to are too heavy going, so have a quick look, and then you will feel more in control when the report does arrive. In the mean time, I can have a go at answering questions you might have, as can the other mums on our thread.

I feel really bad now :(
I always though she was messing around when she wouldn't get up properly; she has to roll to her side or asks to be pulled up. I'd get the hump teary emoticon needed.
I don't think she's that bad as undetected for a while but even so.. Now I feel just awful.

Well don't,I didn't mean to make you feel bad

This is an unusual condition, which goes undetected by many a medical professional. One of the things that makes hypermobility unusual is that is affects individuals so differently. But low muscle tone, in core muscles is something which can be improved. we have been working on my ds' for the last two years, and in the last six months or so he has improved so much.

I still get frustrated with him, and find myself saying things like..you're 8 you can do that.....bad bad mother emoticon needed for me!

I am guessing she is not suffering with a great deal of pain, if any at all, this is a really good sign. And you are already on the way to getting some help ad support. Physio is the best thing, it can really make a difference.

It's understandable you used to find it annoying - it is difficult to understand, sometimes. If you are very hypermobile, sitting straight up from lying down on your back can be very tricky - it requires good core body strength and the problem with hypermobility is that the lack of stability around your joints makes it very difficult to build up the muscle strength in the first place. Normal daily activities that would be enough for most people just don't do the job properly for hypermobile people and instead cause them to overuse the muscles they do have available to them and underuse the ones they don't have enough joint stability to access properly - result being pain and potential joint damage. Basically, a hypermobile person needs to be much stronger than someone with normal joint mobility in order to be able to move about without damaging their joints: the muscles have to provide some of the stability that the ligaments and tendons are not providing (and the muscles themselves contain connective tissue so in themselves may just work a bit differently, anyway). Physiotherapy can be colossally helpful here, because a physio can focus in on the weaker muscles and work out ways to use them safely to make them stronger. Physios can also help explain some of the more obscure effects hypermobility can cause (eg when trying to teach my ds1 how to do up his watch by himself, it drove me crazy he couldn't seem to twist his wrist round to access the strap, but the physio told me that doing this was pulling his shoulder out of joint...). My ds1 had quite a lot of physio and is now a much happier, more active, physically capable little boy - it's all about enabling them to use their bodies effectively so that they don't store up problems for the future and so that they can enjoy the present a little bit more.

I have a good news story for you, Dd3 was assessed by an OT last november and found to be hypermobile in all her joints.

She has always been the floppiest child and needs lots of rest. she couldn't sit properly and was constantly falling over.

We started doing exercises[sp] straight away and got a referral for physio and pediatry.

She has about 15 different exercises which we try to do on a rolling program.
She also has ASD so I find it hard to motivate her sometimes.

She has also been doing Activate at school for the last 6 months.

The difference in her is amazing, her strength has improved massively and her balance. She has more or less stopped falling over, partly due to the orthotics.

Don't want to go on but just wanted you to know that with an exercise program there can be imporvements.

Dd3 still needs to rest after school but now she moans if we go to school in the car instead of walking.

Oh and I would recommend a gym ball if you have room for one, they are brill for building up core strength.

Good luck

Thanks Guys,

I've been reading up a little from the links and I'm not sure DD has it bad enough for them to class her as having the syndrome. Think I'm looking into it too much... which isn't unusual for me

She's definately got flexible joints in hands/elbow but not sure else where and she only has slight aches when walking upstairs or going to bed - nothing really painful.
I also got both DC to get up from the floor and they were fine - it appears to be more from soft surfaces such as the bed?

Isn't it hereditary - I don't know anyone else with flexible joints in my family; DHs family is fairly small but don't think so, unless they weren't aware.

Oh well, I'm now not sure.. suppose we'll just have to wait and see what everyone says following the report.

Ds1 has never complained of anything more than tired legs, either - he was never assessed for pain, but for delays in his gross motor development. I would be surprised, given how hypermobile he is, if he doesn't have some discomfort as a result when he is an adult, but he doesn't complain about it, now. And I don't get pain, but I'm also very hypermobile and always wondered how other people could stand still for so long without feeling uncomfortable and slightly light headed - I have flat feet and very mobile hip joints.... Osteoporosis and earlier than average age for onset of osteoarthritis also run in the family, as do all sorts of other things more commonly found at a younger age in the hypermobile population (but, frankly, also pretty common generally). My ds1 is the only one ever to find their hypermobility a genuine problem, though, and I was the first member of the family to have hypermobility obvious enough that people used to comment on it (I was very good at gymnastics, my fingers can bend in all sorts of directions, etc).

It's a combination of personality, physical issues and neurological issues quite often, it doesn't have to be purely hypermobility plus pain for hypermobility to be a problem. That doesn't mean that dealing with the hypermobility won't cure an awful lot of the issues, just that the hypermobility is possibly only a particularly big problem for that person because it goes alongside a particular neurological profile (eg the person has poor awareness of what bits of their body are actually doing at any particular time, or has very mild motor planning issues that without the added issue of the hypermobility wouldn't really cause any particularly noticeable problems, or the person has sensory sensitivities which cause it to be difficult for them to develop skills that require a good memory for touch (eg doing things when you can't see what you are doing but are relying on how it should feel).

How bad do I feel when I tell DH about the OT tests etc and what was said, explaining the 'she can bend her fingers back up to...' as DH interupts and says 'like this' giving a nice example. I'd forgotten he could do that , its not like we've gone into great discussion before over it and he only makes a fuss about his joints aching and cramps in his legs at night ALL the time. I though he was just a typical moaning man woopsie.

So, now we've established where that comes from, we'll just wait for the report and go from there.

well it is difficult to sort out pain from man pain! It is inherited, but you have found your link now! He will be the source of the dodgy gene, but after the gene is passed on, it is a total "free for all" as to how severely someone is affected, which joints are involved etc. One thing I have learnt is that my ds has not followed any pattern remotely similar to mine.