worried about hypermobility.

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My 19 month DD is hypermobile. Not sure where yet, as she's not been assessed properly, but we know her fingers are hypermobile and her hips. I suspect wrists and ankles, and her shoulder blades feel loose too. I know it's a systemic thing, so it's likely to be all over.

I know I'm buying trouble ahead of time, but I feel SO worried about it. I keep thinking she won't be able to write or do things like her peers. Or that she'll be in pain.

Lots of people tell me that you can be hgypermobile without pain or too many consequences. Is this true? How can I sit with it and not worry? There's little they can do now anyway, apparently.

She is very happy and doesn't appear to be in any pain now.

Most children are hypermobile. Ds is and his gross and fine motor have been slightly delayed but he's getting there. Please don't worry, you'll have a better idea when she's formally assessed.

19 months is so young and with exercises you can help her.

Thanks electric
when did you get your son assessed? When you say delayed, when did he start walking etc? How did you know?

There is a lot of difference between the syndrome which can cause pain and benign joint hypermobility which is much more common. As PP said, there is a good deal you can do to strengthen joints e.g swimming.

I have hypermobile joints but apart from my pen grip and having trouble kneading bread dough because my wrists are weak that is the sum total of the problems it causes me!

I also have a DD who has hypermobility along with low muscle tone and this is more problematic as the limbs and the joints are weak. She has no apparent pain but isn't very physically able and has needed physio. It's the low tone causing the problem though so the hypermobility on its own is much less of a concern.

He was around 15 months at the first assessment and walked unaided at around 19 months, he still didnt crawl for a while as he used to bum shuffle.

As has been said being hyper mobile and having Elhers-Danlos Hypermobility type as it is now called, are very different.

I'm hypermobile and I've just got a physio referral for DD (11 mo). I'm pretty sure her hips/shoulders/knees/elbows are affected. She does occasionally get herself into positions where she is in pain. I'm hoping that a little early intervention now will help us to help her develop her muscles in a way to support her joints. She's reluctant to put weight on her legs at all.

I wasn't diagnosed until I was in my mid-20s (I am an old gimmer and it wasn't really heard of before then). This was a problem as I'd already damaged several joints. I got really good physio which helped to stabilise things. However I've had other recurrent dislocations since then and suffered with pretty bad SPD in pregnancy. I'm trying to use swimming and yoga to keep myself fit.

On the other hand though, I didn't have any problems with writing and apart from my knees (I buggered up the ligaments when I was about 10) was not in any pain as I was growing up. I was rubbish at gym and sports but to be honest, I think that's was much to do with bad hand-eye coordination as the hypermobility! I didn't have any problems writing etc.

Because it's a syndrome it can affect people very differently. Have you found this page yet? I found the info helpful and well balanced and it explains the different ways you can be affected - though many people only have a few symptoms, not all of them.

marking space so I can reply on my laptop

It does affect individuals very differently, worth remembering until you get SN assessment.

thanks your replys are very helpful.

She is walking unaided, and has been since 17.5 months. She crawled and sat up fine. She doesn't seem to have any problems weight bearing and holding spoon or picking up things like peas etc.

When she points her wrist drops so her hand isn't level with her arm, if that makes sense, and it makes me think it's quite loose.

I know time will tell, and all I can do is wait. I know that I want to get the right support early, so that her muscle strength can be developed as best as possible.

I don't know why I'm so worried, but I really am!!

What is SN assessment? I was told it wasn't worth getting her assessed fully for some time

I have benign EDS hypermobility type 3.
Try not to worry too much, it hurts sometimes, but not all. My dd is also hyper mobile at 2.5, I'm not in any rush to get her assessed and I don't treat her any differently apart from not swinging her by her arms (that was the cause of our first ever trip to a Thai hospital- not recommended!).
Your daughter will in all probability tighten up a lot as she gets older- try not to fret too much.

From what you've said, I rreally really would not be worrying. Like I said, most children are hypermobile, it can make progression slower but they can and do grow out of it. It's a scary word but not always a bad outcome.

youre all very sweet to reassure me. I don't know what's wrong with me. I'm usually made of much sterner stuff than this

I do appreciate it. Thank you.

Don't feel bad, emotions fluctuate, hormones, things in rl etc.

A sillyphase... yes, that's true. Emotions do come and go.

Try not to worry honestly, I am hyper mobile and it has only been picked up in the last two years! And I have it in almost all my joints!

I'm pretty sure my daughter has it too, we laugh at her floppy wrists sometimes, she is always dropping things and covered in bruises. Best to make light of it really and give her a sense of humour about it rather than labelling anything, I believe.

Op, if it helps you I and my dc have EDS hyper mobility and my feelings fluctuate about living with it, I had a cry about it earlier. I will be ok with it tomorrow.

I typed this out hours ago - but for some reason it did not post. Trying again!! Was on my smartphone and trying to type a proper reply was just too pesky!

OK firstly don't worry. Hypermobilty does not have to be a horrendous thing. I have lived with it my whole life. My family on my Dad's side have a genetic tendancy to Ehlers-Danlos type 2 - 3. That is the most common type and many people suffer without even realising that that have a "condition". My DD who is 8 has it too and is super stretchy, and super agile. She honestly views the whole thing as some kind of super power!! For me the aches and pains did not set in until puberty and I suspect she will be the same.

Have a look on the support site for Ehlers-Danlos support UK www.ehlers-danlos.org/ they have lots of great info. Also www.hypermobility.org has fab info. Read up on it - but do not be freaked out when you read the descriptions of the types and look into the higher numbered types where people are claw handed or in wheelchairs, that is not the hypermobile form of EDS. This would be generally diagnosed very early AND is VERY rare. Most people have types 2 - 3. Which are very managable.

The diagnosis for this is via Brighton Scale tests, many of which you can perform yourself. If your DD has it, it is likely either you or DH do. Note that the types do not mutate over generations - so if type 2 runs in your family she will have type 2 and so on.

The best thing you can do is do good healthy excercise which keeps her joints and muscles strong. Suddenly stopping excercise fearing it will do her harm will result in problems / pain over time. So good healthy excercise. Nothing special just good old child like fun. Yoga helps - there are loads of good kids yoga classses - as it helps with strengthening. EDS hypermobility is a collogen disorder.

The best specialist in the UK to see for this is Professor Rodney Grahame, Emeritus Professor of Rheumatology, University College Hospital, LONDON. He also has a child's clinic at Great Ormond Street. You can ask your GP to be referred www.uclh.nhs.uk/OurServices/Consultants/Pages/ProfRodneyGrahame.aspx this is his info. He is a lovely man and very good with kids. He made my DD feel very comfortable and sorted any concern we had. Your DD will also be sent for an echo cardiogram so they can see if she has Mitral Valve Prolapse which can crop up in EDS sufferers. MVP can be serious but in many cases it is minimal. My DD has it, (but it is not serious enough for them to be concerned.) again nothing to worry about but it is good to know.

Is she particularly long in the body, with long arms? Does she have a long face? Do you or hubby? Is her wingspan wider than her height? Does she generally "W" sit? do you or hubby? Is she fidgety, does she get uncomfortable easily? Is her skin Stretchy? Do you or DH look great for your age?? These are all indicators.

To put your mind at rest. Prof G sees many many incredibly able bodies folks who are EDS suffers. Many ballerinas, gymnasts and acrobats are EDS. Their body is stretchy because of it and has allowed them to persue those careers. They just need good excercise to manage thier collgen strength. It affects me by making me look younger than I am (our skin is normally very good and stretchy - my gran looked 65 at 90!!) It makes me very supple. On the down side from age 14 onwards at the change of seasons I had pain in my joints, not major but it was there. If I lean on one arm for example for too long it will hurt longer. Sometimes it gets me down, other times I seldom think about it. Everyone suffers differently. My hubby also has marfan in his family which is a related condition, but fortunately thus far it has not caused anything too akward in DD>

Remember if your DD is hypermobile she will be able to do lots of crazy stuff like the splits etc. She will still feel the pain (as we would) of dropping into the splits without warming up) and she may well be ablet o do it. But her muscles will hurt afterwards and she may damage them sprain them trying to do stuff without warming up. So encourage her to do warm up excercises if she does intend of being daring. We have found rock climbing (I know your DD is too young yet) is a fantastic way of building and keeping up excellent muscle strength and our whole family go often. DD is like a lizard and enjoys it so much she has no idea why we do it.

Have to go now off to a party - but if you have any questions fire away. My family has lived with it and still do.

Good luck xx

It is a very variable condition. The majority of hypermobile people have no symptoms at all: the term hypermobility syndrome is usually reserved for thos who do go on to develop symptoms.

We have it in my family and we are all affected differently. My dd is at the extreme end: in fact, I'd say she is disabled. I otoh used to work as an archaeologist, swinging a pickaxe and pushing wheelbarrows up slopes, so you could hardly say it has held me back. I just knew which were my weak joints and avoided putting any strain on them.

Beneficial exercises include swimming- very good for strengthening joints- and dance (because it is controlled movement).

If your dd develops pain, it will most likely be during a growth spurt- either the growth spurt around 7/8 or puberty.

Hiya, i am another with Ehler Danlos Hypermobility as is my DD. The advice concerning exercise is spot on. The fitter you remain the easier it is to manage the condition. Carrying excess weight is really tough on weak joints and if your joints cause you to struggle with exercise, its terribly hard to lose.

Watch out for your dd exploring her bendy abilities as she grows. I was very aware from a small age that i could do things others couldnt and would dislocate joints for my own amusement and that of others. This party trick did not hurt at the time and i felt no pain till puberty kicked in and then it really hurt. In hindsight i can see i must have caused a fair bit of damage to myself. My fingers in particular are paying the price of curiousity.

I have daily pain, frequent dislocations and developed oesteoarthritis at a young age. I also practice martial arts, do weights training, cross training, snowboarding and have a physically demanding job. It is about making adaptations and managing your limitations. I can do anything i chose but have to go about it in my own way.

The hardest part of living with EDS for me has been the total ignorance i have encountered within the medical profession so i would suggest getting very well informed.