7 yo with hypermobility and exhaustion episodes please help

[UnbalancedMum]

My daughter is 7, she was diagnosed with hyper-mobility when she was 3, after a physio referral because her feet were completely flat causing her to trip over. It’s obvious now that all of her joints are extremely hyper-mobile. We also have EDS in the family (her aunty on her dads side) quite severe along with other issues. I’m also hyper-mobile.

Up until she was about 6, it was only ever bendy/clicky joints. A couple of dislocations.

Now for the past 18 months, she’s been suffering with episodes of exhaustion. Especially after physical activity or when she is ill. For example we could go to the park for an hour and a few hours after for at least 3-4 days she will be utterly exhausted, very withdrawn and want to do nothing but sleep or lay on the sofa. She complains of left sided upper abdo pain too. The worst episode was nearly 2 weeks. I’m aware the symptoms JHS and EDS can cause in regards to pain/tiredness and digestive issues.

We were eventually referred to a paediatric unit at a hospital. After several doctors saying it’s viral, or hypermobility doesn’t cause any issues like this or it’s a stomach migraine. The paed gave us Movicol and omeprazole and again said her hypermobility is nothing to do with it.

It’s always after she does anything physical or taxing. By the end of the school week she struggles to move/stay awake. It’s heartbreaking to see and her episodes are becoming more and more regular. I’ve spoke to the school who said a care plan will be put in place so she can do something else instead of PE if she’s struggling etc and so staff are aware of her being more prone to sprains/dislocations etc. Her attendance is now below 94% she’s had three days off since September I try and get her in everyday but she genuinely struggles so much when she’s having an episode. She had an afternoon off for her hospital appointment and now any absence will be put as unauthorised because her attendance is under 94% I can’t take her to the doctors to get a note everytime she’s having an episode that wipes her out.

I’m currently on the phone to the GP to try and get another appointment to do something else. I’ve no idea what. I just want to help her and I seem to banging my head against brick walls.

We had blood tests done two weeks ago for full blood count, liver function, creatine and coeliac (MIL is coeliac) and DD has been tested before and came back negative.

Her exhaustion isn’t food related I don’t think as it’s always after exerting herself. I try and get her to rest and she has a balanced diet and a multi-vitamin. I’m at a loss as what to do next any advice welcome

Thankyou
An exasperated mum 😭

I used to treat hypermobile children as a podiatrist. Quite a lot of them get stomach pains. Hypermobility is a connective tissue disorder and can affect any connective tissue in the body, stomach, arteries, veins, anywhere there is connective tissue in varying degrees.
Generally I'd diagnose, make insoles to prevent that dramatic flattening of the feet when standing and refer to paediatric rheumatology for a more in depth diagnosis. we'd generally refer to the paediatric consultant because it's a better hub for services - physio, special footwear, help at school and so on.
We had an entire family of them many years ago, youngest was fed through nasogastric tubing as his stomach didn't work, most of them had chronic fatigue and one had had a stroke as it affected the arteries in his head. That's very rare though and this family was particularly badly affected.
So I think your daughters problems sound largely consistent with EDS/hypermobility.
There are loads of great internet sites you can read to tell you how to prevent further problems but it is mainly prevention and things can get better as they grow.
Just make sure you get the correct referrals so your daughter can get the help she needs.
GPs aren't EDS experts - you need a paediatric rheumatologist.

Also POTS (Postural orthostatic tachycardia syndrome) can co-occur with EDS and is associated with fatigue, so ask for her to be checked for that too.

@madcatladyforever @sue51 @MoodLighting

I’ve only just seen your responses my apologies! Thank-you so much I’ll take all of this into account. We now have a care plan in place at school and a referral to the Evelina in London. Thankyou everyone x