to not know why a joint would click in and out in a child?

[ScaredANDalone123]

I know I’m posting in AIBU but I’m at the end of my tether
This has been going on for a long time with my 13 year old DD
NHS basically said physio waiting list was 9 months so I went private - no obvious problem found so back to the NHS to ask for an ultrasound which has come back clear.
They won’t do an MRI but will refer for a private one?!
Still waiting for the NHS physio 8 months on.
Her ankles literally give way in front of me where she has to click them into place to feel relief and like she can walk again.
The pain can wake her from sleep it gets so bad.
I must be missing something as even the doctors seem to not know what’s causing it?!
blood tests clear and no signs of hypermobility - at a loss!

Possibly hypermobility?

So sorry, just read your last sentence 🤦🏼‍♀️

Who's said she doesn't have hypermobility? The GP? I don't trust GPs at all with kids and musculoskeletal stuff, ime they ignore it or mutter growing pains. Both my kids are under Orthopedics and Occupational Therapy but I got that by taking them to a private osteopath for an assessment, they wrote a note to the GP saying they thought the child had x and needed to be assessed by x specialty. It's very hard for the GP to ignore an osteo recommendation. If you can manage £50 ish for the osteopath assessment, I'd go down that route.

By no signs of hypermobility, what has been checked? You can have hypermobile joints without having generalised hypermobility. I would ask for a referral to podiatry - they can assess gait and ankles and may make further suggestions such as orthotics to support feet/ankles.

A good friend was only diagnosed with hypermobility in her 30s. That was by a consultant at Huddersfield after referral by GP. She had multiple joint dislocations and a condition called Ehlers Danlos. Might be worth a look?

Another saying Hypermobility issues. This was my DD & she has hypermobile Ehlers Danlos.

If you google "Beighton Score" in images, you'll find a chart to check her against so you can test her yourself. Often it runs in families, so it can be our normal & so missed unless more severe, if that makes sense. She'll need to see an Ehlers Danlos aware paediatric rheumatologist, so research is EDSUK etc, unfortunately not all consultants & doctors are equal in their understanding of these conditions conditions

When I did a rotation in rheumatology, the amount of adults who were told as children they didn't have hypermobility used to astound me. Can you see a private rheumatology consultant if there isn't an NHS one seeing kids?

You need a specialist. Sounds like EDS.

One of my dc has had Beighton score ranging from 2 to 9 so not all hypermobility diagnoses are the same also as pp says it could just be in one joint. I would see if you can find a private physio so you can work on some basic strengthening exercises.

We paid about £120 to see a private physio who did an assessment of DC who has similar ankle issues and also subluxes shoulders. We then took that back to the GP who referred to podiatry and NHS physio for exercises and supports.

Oh & Hypermobility often goes hand in hand with ASD. So this might be worth keeping in mind. ASD wasn't obvious in ours until she hit her teens, but with hindsight we realised that she took the doctors requests on the Beighton score tests very literally. When asked to touch her toes, she touched her toes, so not hypermobile. When asked to keep her legs straight & put her hands on the floor in front of her toes... obvious Hypermobility

Would an MRI be helpful in showing any hypermobility issues or a complete waste of time if this is what it turns out to be?

That sounds rotten for your poor dd

No advice but hope you manage to get it sorted

Thank you - I’m happy to pay for an MRI if it will help her! I just want to know I’m going in the right direction at least

I thought EDS (Ehlers-Danlos Syndrome) ask for a second opinion from GP/specialist and push to be seen

My daughter has Ehlers Danlos, it was diagnosed when she was twenty one. Her hips and ankles are very clicky.she has very slender, tapering fingers. The diagnosis is made using observations rather than blood tests and scans . It's a bit tricky to diagnose and took years. It also causes exhaustion.

DD has EDS and her ankles, jaw and ribs slip all the time.

EDS needs to be explored as a possibility imo

Diagnosis doesn't always take years. Probably depends on area. DD had v obvious symptoms and was referred by a GP to see a rheumatologist. She was seen within 6 weeks and diagnosed at the appointment.

Hi op,

I'm a paediatric physio
Happy for you to pm me if you like

Ive pmd - thanks!
Bloods were the first thing to be done and they are normal
score is 0 on the test mentioned - she’s not in the slightest flexible
I just want to know if an MRI will pick up on hypermobility if it is that or if it isn’t what on earth could be causing it

EDS is a ballache to get diagnosed- its faulty collagen so probably won't show up on scans.
There are loads of connective tissue disorders though, I have EDS in my family but one of us is completly not flexible 0 on the beinton scale despite the rest of us getting 8 or 9.
They are the one who has the most subluxations, ribs, ankles shoulders wrists etc, they were just diagnosed with 'a connective tissue disorder'.

The pain really sucks, generally anything to build strength without straining is good- so swimming etc to build up muscle around the joints to support them

An MRI, Nor other X-rays will show Hypermobility. It needs an assessment by a good EDS aware paediatric rheumatologist. They will order other tests such as heart scans, heart monitor as rarely there can be minor heart anomalies too. Any dizziness, anxiety etc should be checked for POTs which is often comorbid with EDS, though in our experience that didn't show up until pre teen.

If you have money to spend on private testing, I'd suggest getting her an active B12 test. If you ask your surgery or local hospital about "private medical" you can pay via the nhs. It goes to the main, most reliable testing centre & is cheaper. I think it's at St Thomas's , but my memory is hazy tonight. So double check, uk they had a walk in clinic too

In our experience & others we know, low vitamin B12 makes EDS loose collagen worse, puberty needs more B12, plus things like antibiotics, diet, gastric trouble gas & air for dental work or injury etc can affect vitamin B12 too. Our DDs joints & symptoms became worse & worse & though they blamed EDS & puberty hormones, it turned out to be due to pernicious anaemia. She (&me) can't process B12 well, so we need injections. The B12 injections made a huge improvement to her EDS symptoms. GOSH knew of the link between low B12 & EDS when DD was under them. So it's definitely worth checking

hiya op i have both EDS and hypermobility and it's horrible to diagnose, you have to really push, especially because you have a teenage girl, does any other joints click at all even just slightly or was she slow to walk? Of course feel free to pm me if you want to know more but for me i was a late walker and my mum would hear me clicking when she was pregnant with me, i only got diagnosed with EDS at 16 and i was 10 when i got diagnosed with hypermobilty after months of pretty useless physio.

If she does have EDS mainstream physio may just cause her more pain as horrible as it sounds she'll need specialist physio given to her by the rheumatology team possibly

I've just checked & I see Dr Nelly Ninis is still around. She was NHS at st Mary's & private at the Hypermobility clinic in london

I highly recommend her especially fir a teen. My DD was diagnosed with Hypermobility by an NHS doctor who believed it made her prone to injury & muscle aches only, refused to acknowledge other symptoms which were affecting her badly at the time. DD wasn't great at speaking up herself, especially to doctors who she didn't trust. We saw Dr Ninis privately at NHS list was 2 years & we needed help in school. Dr Ninis made her feel so believed & important that DD opened up like I've never seen before. We left with a full written report, listing all DDs issues, comorbid conditions , with NHS referrals & that letter is still a godsend even today as it finally got her the help,she needed & all symptoms recognised as EDS