DD possible hypermobile, what to expect?

[pantspantspants]

Hi, DD2 is waiting for a referral to see a consultant as her peadiatric consultant suspects some sort of hypermobility. I don't know what to expect so was looking for someone to let me know what they may do to diagnose and what it means etc.

DD2 is 2.7 she has been seeing a physio for a while who said she had a hip problem but I didn't feel like this was right so, spoke again to her peadiatric doctor who examined her again because she has crept up to above the 98th centile on height, he agreed something else was going on and referred us. She is also having hearing checked because of her coordination.

Her symptoms/my concerns are ;
In-toe walking
She sits with legs out forward but feet turned in toes touching
she sleeps with legs out, feet turned in but head between her in turned feet so she's completely folded
she gets her arms into strange but seemingly comfortable positions.
She hates feeding herself or colouring because it "hurts"
frequently falls, trips over nothing.
Even when crawling she struggled to coordinate and tripped over feet
poor coordination
Seems like she's trying to walk one way but walks another way and bumps into things.
She doesn't seem to have a natural walk it all looks like she's just started.
Her height is noticeable, she's taller than the 4 year olds on the nursery.

Anyone with any experience of hypermobile or recognises some of her symptoms, any advice or suggestions would be greatly appreciated. Im obviously concerned that they may find something or diagnose her with something but equally concerned they won't and we will be left wondering if she will grow out of it all.

Hiya I was diagnosed as having hypermobility syndrome at the grand old age of 28. This link will be good for you to read through.

www.mumsnet.com/Talk/special_needs/1021063-EDS-Hypermobility

however please remember there are various degrees of hypermobility

i found this site helpful
www.hypermobility.org/

HTH

My eldest DD is hypermobile, but also has something called miserable malalignment. A combination of femoral anteversion and tibial torsion. Her thighs turn in, so knees point in but shins twist out causing opposing stresses on her knees.
A few children suffer this, mainly girls but straighten out through puberty. DD didn't and is awaiting her first femoral derotational operation.

Ask for your DD to be seen by a peadiatric orthapaedic consultant if her knees turn in rather than point forward when standing straight.

I can recognise most of the traits you mention in my dcs who both have hypermobility syndrome. At 11 and 15 respectively, dd is badly affected, mainly with chronic joint pains, and ds hardly at all, though he did struggle learning to write.

Also watch out for the poor proprioception which means they can fall off virtually anything because they literally don't know what their limbs are doing. Typical example: dd (aged about 7) and I were sitting on the pier one day waiting for a boat when I thought she was leaning too far forward, so I said to her "dd, lean back". On which she promptly leant forward and fell into the water. Fortunately I am a good swimmer.

The good news is, plenty of things can be done to strengthen joints and improve balance and proprioception. Since doing special exercises dd's balance has improved immensely and she has stopped falling over her own feet. Physio will strengthen muscles to pick up some of the slack and compensate for weak ligaments.

I have it! Exercises are essential (pilates in my case). If it isnt very severe it is not limiting at all and makes you very impressive at parties

I have wondered abou this as my DS is very bendy- but didn't realise pain was a factor (he doesn't have pains) so maybe he is just double jointed? Are the two linked?

my DDs are probably hypermobile, DD1 has a lot of joint pain, but being 18 won't go to the GP about it, DD2 has other stuff connected to it, but DD3 is the most bendy - she sits to read with one leg bent to the side but pulling her foot round the outside to touch her chest (ifswim). They all do great body rolls and shimmys though . I think because it's a syndrome you get different combinations of symptoms and difficulties.

plusonemore, it is very much a spectrum. Some people get no pains at all, some people get mild pains, or only in one joint, or only at brief periods in their lives. My mum has led an active life but always had trouble with her knees and never been able to carry heavy things. My problems have been limited to pains in my wrists, but not unmanageable: I still managed to do manual work (as an archaeologist) for years just letting other joints compensate. Ds went through a few years of pains but now seems ok. Dd is badly affected.

as a child I would sit with my knees together in a kneeling position then my feet out to oneside so i looked like a very wide W.

I suffered terrible leg pains which where put down to growing pains from being 3/4 and still suffer to do this day with them.

Coordination and bendyness wasnt really an issue for me although I regularly dislocated kness and shoulders. Can self dislocate my hip any tine I feel like it as an adult. Shoulder pops in and out often as Im getting ready causing little discomfort.

One thing I will advise is to push and push to get a proper diagnosis.

I was told i had terrible arthritis all my life until i was 28. Now Im being told Im hypermobile.

Hi thanks for the replies ladies, we have an appointment tomorrow with a orthopaedic consultant who specializes in children.

Im nervous that they will say somethings wrong but also hopeful they will so something can be done to help.

Im trying to prepare myself for the worse but also prepare myself to fight to make them see she's not coping.

Sleepless night tonight i expect, but thanks for explaining the condition.

Fingers crossed that you get a knowledgeable and helpful consultant!