Hyper mobility

[Shelleyzeus27]

My 6 year old daughter was diagnosed with hyper mobility when she was 18 month old. She was a late Walker/sitter/crawler etc. She was referred to a podiatrist and was given custom insoles because her feet are very flat aswel. She’s still really struggling with pain in her ankles/knees hips etc. He’s falls over a lot and her legs get tired very easily. The doctor said he would refer her to physio months ago but we still haven’t heard off them. My doctor doesn’t seem to know much about hyper mobility so i feel im hitting my head against a brick wall. Please can someone help me with what I should do next or for me to ask the doctor to refer her to? And what i can do to help her. It’s awful watching her not been able to do what her friends are doing, she’s so cautious and won’t play on much at the park etc. Thank you in advance

I would go back yo the gp again and ask to be referred to occupational therapy (OT) they will be able to asess your daughter and provide aids and adaptations for her. They can usually refer on to physio too

Can you make a self-referral to Physiotherapy in your area? Just in case the GP’s referral has got lost or doesn’t properly outline the concerns that you have.

You have to pester them, honestly my GP was useless when I was ex and took 3 years and various referrals. They were that uselsss I’ve just managed it alone for 10 years but I struggle now. Keep on at them. A lot of people think it’s made up etc or that it’s just bendy joints they don’t realise how tiring it is or how painful it can be

NHS physios know very little about dealing with hypermobility too. Can you afford to go private? Even for just one appointment? She needs strengthening exercises that are appropriate for her age. This needs dealing with before she is starting to get towards puberty because hormones will have a huge impact on her and it could literally stop her from walking full stop. It is a manageable condition with the correct knowledge.
This is a good website for learning about it www.stuffthatworks.health/hsd

I have hypermobility, it's a pain but manageable. You need to speak to a rheumatologist who can explain & give you advice...

There's a book you should read by Claire Smith www.redcliffhousepublications.co.uk/product-page/understanding-hypermobile-ehlers-danlos-syndrome-hypermobility-spectrum-disorder

The NHS generally knows very little about hypermobility.

Both my children have hypermobility and both had referrals to paed physio when they were late walking.

The main thing we had to stabilise walking was extra support around the ankles with footwear. The NHS used to provide little boots with support, but stopped doing that. The boots are very similar to these ... https://smile.amazon.co.uk/dp/B08GKXN3YR/ref=cmswwrsmssapiglttfabcKMEPRH67T92CQ68J6R9Q

She does need to be assessed properly by a physio and they will probably conduct a review and here is some info from Alder Hey

https://alderhey.nhs.uk/application/files/9116/2307/8403/HypermobilityLeaflettPIAG085.pdf

Sounds like she wouldn't be able to participate fully in PE and therefore maybe it's probably best to contact the SENCO at school as well.

My daughter is the same age and has similar issues. She is hyper mobile and flat footed. She used to get a lot of pain when she was younger but that has improved. She still does say if she went for a long walk.

We were referred to physio and only ever had one assessment and given advice.

The most important thing is supportive shoes. Particularly around the ankle. Not too flexible but not too stiff either. Things like sandals, crocs, jelly shoes, flip flops are usually a no no unless for short periods. Trainers, proper shoes, boots etc are pretty good or high top trainers. Wellies aren't great either but okay for short times. The support around the ankle should be solid and not be able to be pushed in. It's often thought that the most expensive shoes are the best but that's not always the case. Clark's are terrible for Dd.

Dd did have insoles for a short time but she complained off pain even more so with them in. We just use supportive shoes now instead.

They also said exercise but make it enjoyable and short bursts. They said walking barefoot on the beach is great (we are fortunate enough to live 5 minutes from the coast), swimming, soft play (climbing) are all good too!!