To go back to docs and put my foot down so they will listen

[thismorning123]

Been to the doctors twice now about DS and his joints and pain. Hes 9. I suspect hypermobilty. My elbows go further than they should and so does his. Im very flexibility and had knee pains/partial dislocation as a kid.
His joints are always clicking and a few times he has cried as he said its painful when they click.
His hips hurt when he starts too long and is quite clumsy.
Once time I took him the nurse said it was just growing pains and it was nothing. Second time a doctor tried to bend his thumb to his hand but DS couldn't do it. From my understanding not all hypermobile people can do certain things.
He also has had reflux and digestive issues his whole life.
I just want them to listen and at least rule it out. I wouldn't bother pursuing if it weren't bothering DS but hes crying. Yesterday his back really hurt. Its just so frustrating that they won't listen even though we know our own bodies best. Bending 1 thumb back isn't a test.
aibu to go back again? What should I say?

Before you go, write a clear list of all the things you are concerned about. Ask what could be causing your child to be in pain.

I'd go back to them and request genetic testing. It's possible that your son has a connective tissue disorder. I'm not a medic, but just speaking as someone whose children have one (as do I). I was fobbed off with my oldest when he was experiencing a tremendous amount of knee pain - it turned out his hip joint was in a very bad way. Follow your intuition - if it turns out it is indeed growing pains, that's something that'll hopefully ease with time (still upsetting for you both at the moment, given his discomfort), but it it isn't at least you'll then be equipped with the indi you need. Sorry you're going through this x

Get details from nice and nhs direct which will help you argue for the right pathway.

https://cks.nice.org.uk/topics/common-musculoskeletal-presentations-in-children/management/growing-pains/

Use this to help you at your next GP appointment, widespread pain including back pain is a red flag on this list, as is the pain becoming more severe. They need to refer to paediatrics for further tests.

Could you get a physio to look at him? They can then send their findings to the GP I think. They're sometimes really good at recognising the problem. And it doesn't cost that much.

What are you expecting from your GP? A hypermobility diagnosis doesn’t really do much as there is no cure or treatment for hypermobility.

He needs to build strong muscles to support his joints. Swimming and cycling are excellent for this as they are low impact on the joints. Make sure he’s not overstretching or doing “party tricks” as that causes injuries and long term joint damage. If his hips are particularly problematic, an SI belt might be useful to support his back and hip joints for more strenuous activities.

For the digestive issues, he needs a gastric emptying study to check for gastroparesis which is very common with hypermobility. You need a referral to a paediatricic gastroenterologist for that. You can also make some dietary changes which might help. Cut out foods high in insoluble fibre, fatty foods, the wind producing foods and stick to softer foods.

So over the past year my brother has asked his GP to investigate hypermobility 5 times, and they've simply said they don't refer for it anymore because they can't treat it if it is hypermobility, however, I've had joint and muscle pain all my life and hypermobility has been documented in my notes although not formally diagnosed. It seems like it isn't something they're willing to consider in (at least our) general practice.

I recently had my 6th physio visit, where each appointment they've looked at specific areas of pain and instability, and decided to throw in the towel and refer me to MSK for hypermobility to be formally diagnosed as it is a waste of physios time and resources to keep investigating when their interventions aren't helping.

I also barely just scrape on the Beighton scale, which is one of the reasons it's taken so long to consider and the joints affected aren't ones they'd look at on a Beighton test.

I would dig your heels in if I were in your shoes, but I would also want all other possible causes for the pain ruling out first.

Hypermobility is kind of just a label. There's a strong link with mental health conditions.
What would that label give you and your son ? Is there a benefit to focusing your energy on this diagnosis?

I think we live in bad times for how we treat Drs/GPs. Obviously if you really feel there is more going on with your son that's being missed - you could seek a private consultation?

Yes I also wonder if this label was applied to him how would it help? Would he be in any less pain?

I would try to change around the mindset that you go into the consultation with.
The current ‘us versus doctors’ and ‘doctors are all shit and don’t care’ mindset that social media is leading is deeply unhelpful.
Most doctors want to help people (otherwise they could have gone into law or finance with a bigger payout and less risk of being sued). Especially GPs.
They are currently often overworked, under-resourced, being told they have to manage resources better, constantly afraid of missing something ( due to being over worked and under resourced) and generally often just rather tired.
If you go in ‘putting your foot down so they will listen’ then that is deeply antagonistic and likely to get things off to a bad start.

Help them to help you.

Make a nice clear list of the symptoms that are worrying you. Put it on the desk so they can see it right from the start.
Make a list of the conditions you are worried about and would hope they might consider. put it on the desk.
Then pause, let them take it in.

Try to talk calmly and steadily ( when we start talking really fast and trying to get lots of things out at once it is just overwhelming for the person listening).
Try not to blame/ get distracted by previous poor service ( you are just wasting time in the consult).

Listen to what they are saying. You are an expert in your son.
They are an expert in what can and cannot be done.

And yes, I really like a pp suggestion of seeing a physio to get their take on it too.

Good luck trying to help your son.

Hypermobility can be associated with neurodiversity.

If it's causing your son issues, I'd ask for a referral to a rheumatologist, especially one that is aware of things like hEDS and EDS.

Thankyou for this post. It's very accurate and well thought out. I agree with all of it.

Yes exactly and I suspect he is neurodiverse. I am diagnosed ADHD and strongly suspect he is too. I also suspect the hypermobility and know they can be linked.
People saying a label wont make a difference but I think that's wrong. It helps to understand yourself and find ways to deal with things. If you're just guessing in the dark then I don't think that's useful.

Thank you, yes I agree.
I always remain calm and discuss what my concerns are. I've been asked what I want out of it and I've told them.
DS had alot of health issues as a baby I.e allergies, severe reflux and I was made to feel I was over anxious. In the end we were in hospital I refused to leave until someone investigated probably and stopped fobbing me off! Turns out DS was aspirating his reflux and that's why he kept getting so ill.
I do feel unless you are relentless and firm you don't get anywhere and most will fob you off

It is useful as it provides a starting point to help yourself. And understanding why you struggle with things other people find easier, and being able to accept making allowances for yourself in response, is much easier when you have a diagnosis that explains and helps you understand the challenges.