dd is hypermobile, intoeing and things getting worse.... anyone willing to offer hugs?

[MrsShrekTheThird]

Rang her orthotics people last week to explain things had deteriorated and they saw her today. Tears all round on the way out as she understood perfectly what was going on, she's 5.5. She reeled off all her friends names and said that she can't keep up with them and she falls over all the time. Her lower leg bones are really quite curved and with the hypermobility she has no chance. New boots with more support and additional corrections have been ordered.

I sympathise-my DS falls over too trying to keep up with his friends in the playground - He always seems to keep trying though !

and

yes. definitely
I know lots of people are a lot worse off, would happy if their child could only walk, yes I do keep reminding myself to count blessings. It's just that after apparently making progress, and thinking things would be improving over time, we appear to be back at square one.

you are obviously going to be upset for her (as I said ,I know how you feel)- hope the new boots help

My DS2 deteriorated at about eh same age. He had Piedros from tiny, then Piedros with inserts, then with heel cups.. then at 6 he went into full AFOs. I hated it at first but the added support made him a lot more stable and now at nearly 14 they are just part of him:)

Change always sucks, but I think our kids cope with it better than we do..:)

Sorry to butt in but can I ask what conditions your little ones have that make their hypermobility and walking issues worse?

Sorry to sound so nosey, it's just that DS recently saw his physio who noticed he now toe walks (she thinks because of weak glutes) and his lumbar curve has deteriorated. He also has callouses on his feet which are getting worse (indicating his pronantion may be worsening). Whatever his dx turns out to be I'm sure it'll be "mild" but just currently concerned that he's deteriorating and don't really know what to expect.

He doesn't yet have a diagnosis and I'm always looking for clues...

Sorry again for hijacking, I know how heartbreaking it is when you see your child try and keep up with their friends...

I'll have a glass of wine for you...

Lots of hugs. I think personally hypermobility is quite misunderstood and the effects on LOs underestimated. I hope things improve for you all.
xxx

Hugs from me too. My dd is now 8, and she has Marfan Syndrome which causes her hypermobility. I didn't realise why dd fell over so often until she saw an OT for the first time 2 years ago, and she said that it was because dd had to concentrate so hard on controlling her joints to keep her upright that if anything else needed her attention that she couldn't manage both!

It is very hard when they start to realise that they can't keep up with their friends, often when other people don't realise that having hypermobility doesn't just mean that people are a bit more bendy than usual. Dd has orthopaedic boots, DAFO splints and also has a wheelchair because the pain and exhaustion are too much and she is at risk of dislocating just by moving carefully - she also has the cardiac issues that are part of Marfans.

Dd has got a couple of lovely friends that are more than happy to sit out with her, or help her out when she is struggling, this has been better in the last year or 2 so their friends don't always get bored and run off.

(((Hugs))) and from me too Mrs S, regression of any kind is hope-destroying and weighs so hard on you. On anyone.
But reeling off all her friends' names? She knows she is loved and they will surely accommodate her changing needs. Children are more accepting and tolerant than many adults.

Both my girls are hypermobile , dd1 is a lot worse than dd2, her ankles turn, her feet turn, her legs are not as bad but her hips are, dd2 has in turning feet (and very wide feet), her legs bend slightly as do her hips but she doesn't seem as effected as dd1, dd1 struggles to run, jump ect.., dd2 runs and jumps but is very floppy. Both girls have ASD and low muscle tone (dd1 all over and dd2 in her trunk and kneck), it upsets dd1 because she is different and can't keep up with her friends, dd2 is not bothered as her ASD is more severe, she doesn't notice what other people think or say.

More hugs here. Dd used to fall all the time when she was younger: strangely enough, that seems to have stopped after puberty. She still gets the pains etc but at least she is not pitching head first down the stairs anymore.

She has some exercises to improve proprioception and balance: perhaps that would help your dd too, mrsShrek?

You lot are awesome, thank you so much for sharing your experience.

In response to the 'what conditions' question, DD has a combo of individually minor things but that multiply each other iyswim. She's hypermobile, has internal tibial torsion which means her tibia is banana-shaped, more so on left leg than right, and she has flat feet and in-toeing. Individually none of these are serious but the effect of them together is difficult and she has a lot of pain in her legs and doesn't have the strength in her joints and muscles to combat the inwardly turned feet.

Cory, fab idea. Have also decided to take her to a gym club where I used to coach - it's inclusive mainstream/SEN - so coaches are used to all kinds of conditions :) will be perfect for her. No idea why it's taken me til now to think of it

((hugs))
Not thick, just very close to the problem. It's not one I know much about first-hand, both of mine have very bendy fingers and can twist themselves into strange positions, but not really hypermobile.

hugs ds3 has quite noticeable hynpermoblity and wears dafos and piedros were about to back to full afos .

found they work a lot better than just boots