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HyperMobility since birth - Now pain. Is this HMS or EDS?

(17 Posts)
mankyscotslass Sun 03-Jul-11 08:37:07

DD has been Hyper Mobile in most joints since birth. She is now 7.

She was born with positional talipise, which was corrected with massage/maniupulation.

She was not particularly slow to walk (15mths) but was a bum shuffler before that.

At 3 she was referred to a gait clinc, who said she was flat footed and intoed badly, particularly her right leg.

We were referred to a Paedaetric Orthopedic Consultant who said "yes she is hyper mobile, nothing can be done about that", but also stated she has Excessive Femoral Ante-Version on her right leg, which they are monitoring yearly.

She has specially made insoles for her shoes from the Gait Clinic too.

In the last week she has been crying with the pain in her legs, not in the night as I would have expected with growing pains, but during the day.

Over the last few years I have mentioned the Hypermobility to various GP's at our practice, but basically as she was not in pain they gave me the impression it was just one of those things. hmm

I need to take her back to the GP anyway, as she has intermittent issues with constipation which has got worse, and now I want to insist they look further into the HyperMobility, as I think things may be progressing. I want to ask for her to be referred to the hospital for it, but who do I ask to be referred to? Is it a Paedaeatric Rhuematologist?

I have a feeling the doctors think I am neurotic about this,. blush

Just realised how lon this is. [Blush]

mankyscotslass Sun 03-Jul-11 10:38:07

Hopeful bump smile

mankyscotslass Sun 03-Jul-11 13:54:44

And again. smile

hannahsaunt Sun 03-Jul-11 14:16:25

Hi. I am hypermobile and only put a name to it recently because there was a BMJ article on the subject within the last 6 months. My mum is too. It normally is just one of those things ... there is a very good website which has input from professionals. However, there are little oddities which will stand out, including for children significant growing pains. There are good things e.g. women with HMS normally have fast labours (I did, hoorah!) but are then also susceptible to SPD (I was, boo). The only other really bad thing was because it's a collagen thing, a connective tissue disorder, you can be less receptive to local anaesthesia which explains why I found my ERPC much more painful than I had been led to believe. It's not that widely recognised, mainly because there isn't anything to be done - it just is - it's only really of significance when e.g. being referred for physio. If chronic pain becomes an issue (which it can do for a small % of people) then I guess rheumatology is the place to start. I hope you find the website helpful.

hannahsaunt Sun 03-Jul-11 14:21:05

She'll be very good at gymnastics and/or ballet but not raquet sports like tennis because there is a hyperextension of the arm which means you don't have the speed to connect with the ball - hence my tennis coach saying after ten lessons that he had never seen anyone with such poor hand/eye co-ordination. Equally, the people fitting me for running shoes had never seen anyone with such flat feet ... but it's fine smile.

hannahsaunt Sun 03-Jul-11 14:22:49

FWIW my mum and I both score 13/13 on the Beighton score.

mankyscotslass Sun 03-Jul-11 14:37:10

Thank you for the link hannahsaunt, I will have a look now. smile

mankyscotslass Sun 03-Jul-11 14:50:28

And she just scored a maximum on the Beighton score too!

I thnk I have some degree of Hyper Mobility, moslty in my ankles, but she really is, in the words of my GP, "very bendy". She struggles with coordination and is very self conscious about it, and refuses to go to class discos and things as a result.

I've started her at drama classes to increase her confidence!

And that's interesting about the local anaesthesia too, so thank you. I'm sorry you had to find out about it the way you did though. sad

Do you struggle with things like swimming? It was so painful watching her try to leant to swim that we have stopped her lessons for a while!

aliceliddell Sun 03-Jul-11 15:00:33

Dd has this, and rickets due to lack of enzyme to digest vit d. After not much treatment, she's been on medication for the vit d fo 3 yrs, was told by physio to do ballet (strengthen muscles to compensate) but not gymnastics (bendiness causes joints to 'pop' and hurt). She's finally getting regular physio (same aim as ballet). But still nothing in shoes. Get referred to paediatric physio?

mankyscotslass Sun 03-Jul-11 15:13:47

THank you aliceliddell, I will mention that to the GP. smile

Not sure about the ballet though, she feels so self conscious and clumsy, plus the Femoral Ante-version means positioning her right leg would be very difficult.

If I could find a relaxed ballet class it may be possible, but everything here is so focused on exams and performances that I think it would only reinforce her feelings of inadequacy! sad

What do you do about pain relief for your DD? These last few days I have alternated calpol/nurefen to keep her topped up. But until recently she was ok unless we had been walking more than usual.

aliceliddell Sun 03-Jul-11 15:50:49

Manky - your dd sounds worse affected than mine, mine didn't like ballet and it made no perceptible difference anyway. She is in a dance group at a local church, they've had quite a few disabled girls in it and genuinely include everyone. Try churches? You prob don't need any religious belief/involvement. Don't know if mosques/synagogues do this type of thing?

mankyscotslass Sun 03-Jul-11 16:04:01

Thank you, I will keep looking.

The Drama class she attends does include stage movement/dance, so she does get some dance excercise.

cory Sun 03-Jul-11 22:07:39

Many doctors think that HMS is the same as EDS. Mine both have it, and for both of them the pain became apparent around age 7/8. Dd (14) struggles with chronic pain; ds only has intermittent pain episodes but finds writing and coordination very difficult.

You should definitely see a paediatric rheumatologist, OP, and once the diagnosis has been confirmed ask for further referral to physio and perhaps occupational therapy.

mankyscotslass Mon 04-Jul-11 07:47:52

Thank you Cory.

I am now also considering youngest Manky, he is not as "loose" as DD, but is a bit, has flat feet, struggles with coordination and is clumsy and is complaining of intermittent pain in his legs.....sigh.

Will keep an eye on him but will go to GP this week and ask for a referral for dd. Hopefully he will agree and not think I am being over protective!

cory Mon 04-Jul-11 08:38:56

I would have them both tested by an expert: you have nothing to lose and everything to gain. Both mine have suffered from not being diagnosed in time: dd, in particular. If I had my time again, I would be in there pushing for a diagnosis like nobody's business. There is so much that can be done once you know.

angelPeacock Sat 09-Jul-11 23:31:59

Hi, I have HMS and have only in the past coupe of years realised what it is.

Does she say where in her legs the pain is? growing pains are typically noticed more at night, but the same kind of pain can (in my experience) be at other times of the day in hypermobile ME!!

there are many HMS pead docs and getting a referal to a god one would do wonders.

trust your instincts, you know your child better than anyone xxxx good luck with it all xxx

bouliemum Mon 11-Jul-11 22:11:50

My daughter is hypermobile and at around 8 years old developed pain in her legs and bum area. Tbh I didn't think a great deal about it in the beginning.

When it didn't go away and after lots of trips to the GP we were eventually referred to a ped rheum and my daughter was diagnosed with juvenile arthritis.

I really hope this isn't the case for you daughter but wanted to mention our experience as it was more or less dismissed by all the different doctors we saw. When they took bloods there was increased inflammation that could be seen and they still seemed to think it was impossible!

Good luck, just keep pushing until you feel happy with the answers they are giving you.

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