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Original poster

Hyper mobility diagnosis and school support

27 replies

CheersMeDears · 03/01/2024 22:18

DC is overly flexible and able to contort various limbs in all manner of impossible positions.

He has pain when writing, writes very heavy (sometimes ripping the paper with sheer pressure) and always complains that he has severe wrist pain after only two lines of writing.

He also finds sitting on the floor in assembly uncomfortable and his legs get fidgety so he has to tense and release to stop them becoming painful due to the fact he can't actually move around.

Today we had a lot of tears again as he couldn't face school because there is a lesson with a lot of writing. I need to ask for some sort of assessment in case we are talking hyper mobility and he might need some extra support.

It was suggested to me school can assess and link physio exercises and OT equipment like pen holders, but I read only a GP can actually diagnose using a Brighton Scale. So I'm not sure who to approach first. Does anyone have any knowledge or advice?

OP posts:
TheMousePipes · 03/01/2024 22:19

How old is he?

TheMousePipes · 03/01/2024 22:20

Sending your ds a big hug from one zebra (and mother of a zebra) to another.

Lilacdressinggown · 03/01/2024 22:20

GP

Soontobe60 · 03/01/2024 22:22

School can make an OT referral, but they cant diagnose!

TheMousePipes · 03/01/2024 22:25

Can you afford to get a private OT assessment? The wait on the NHS for us was over a year (and this is 8 years ago) so we bit the bullet and paid for private.

Sharron66 · 03/01/2024 22:50

approach a doctor first as the school are more likely to listen if your child has an official diagnosis. waiting lists are long to see a specialist but your GP can often diagnose hypermobility without a specialist examining you as that is what happened for me.

msmatcha · 03/01/2024 22:51

School can get an OT to come and spend a day with him at school. If diagnosed with hyper mobility he may be allowed to use a laptop and have a scribe.

PickAChew · 03/01/2024 23:00

GPs can be pretty clueless on this stuff but a rheumatologist can diagnose (thiugh this tends to be the pathway for adults, IME) and an OT or physio can assess for children thiugh the support recommended by an OT is.more.relevant in school. A physio focuses more on building strength and stability rather than the day to day comfort and reduction of strain that an OT focuses on.

CormorantStrikesBack · 03/01/2024 23:02

GPs should be able to diagnose hyper mobility using the Beighton score. Just be aware you can have hypermobility with a low beighton score.

Dd scored 4, possibly 5 which according to the scale for a child wasn’t enough. GP was very disbelieving of me but I asked for a rheumatologist referral and not only did she get a hypermobility diagnosis but also an Ehlers Danlos syndrome diagnosis.

tothelefttotheleft · 03/01/2024 23:19

CormorantStrikesBack · 03/01/2024 23:02

GPs should be able to diagnose hyper mobility using the Beighton score. Just be aware you can have hypermobility with a low beighton score.

Dd scored 4, possibly 5 which according to the scale for a child wasn’t enough. GP was very disbelieving of me but I asked for a rheumatologist referral and not only did she get a hypermobility diagnosis but also an Ehlers Danlos syndrome diagnosis.

You advocated very well for your child.

Lovely to read posts like this.

Bobbybobbins · 04/01/2024 17:17

The school could/should be getting him to use a laptop for extended writing. Sitting on a chair for assembly. Good luck OP

Sirzy · 04/01/2024 17:22

School can’t diagnose anything but they can support. I would push for an OT referral too.

before looking at use of laptops as default they will probably look at different pencil grips and similar to help with writing. There are also exercises they can do to help with fine motor skills and strengthening fingers.

ds is 14 now and has for many years had a custom made Lycra glove and bodysuit to help him thanks to a wonderful OT when he was little!

Original poster
CheersMeDears · 04/01/2024 20:44

CormorantStrikesBack · 03/01/2024 23:02

GPs should be able to diagnose hyper mobility using the Beighton score. Just be aware you can have hypermobility with a low beighton score.

Dd scored 4, possibly 5 which according to the scale for a child wasn’t enough. GP was very disbelieving of me but I asked for a rheumatologist referral and not only did she get a hypermobility diagnosis but also an Ehlers Danlos syndrome diagnosis.

How did you even know rheumatology review was even an option. It wouldn't occur to me in a million years. I feel so inadequately equipped!

OP posts:
Original poster
CheersMeDears · 04/01/2024 20:45

Thank you everyone for your answers, you've been helpful. I’ve got a GP appointment booked. I'm really interested in the rheumatology angle if anyone has any information about that?

OP posts:
CormorantStrikesBack · 04/01/2024 20:53

tothelefttotheleft · 03/01/2024 23:19

You advocated very well for your child.

Lovely to read posts like this.

Show quote history

Thank you.

LittleOwl153 · 04/01/2024 21:00

My dd(14) s story if it helps...

Diagnosed by paediatics at 21 months. This was a GP referral as she didn't cruise/walk.

School largely ignored till aged 6 when I got GP to refer for an OT assessment. Where I am that is a multi agency thing so that have speech and language, OT, physio and others involved. At this stage she was given a slope to write on in school by the OT. She also sat on a chair in assembly etc. (You can absolutely insist on the chair now without diagnosis as it is clear assembly has impacts).

Dds adjustments all fell apart through a covid transfer to secondary. But she now has a laptop to use in school, doesn't do PE that time is spent in the send space working on her own. Life is still a challenge!

I'd start with the GP for diagnosis but also the SENDCo at school for support NOW rather than waiting for the full diagnosis. They can do chair in assembly. They can look at pencil grips, writing slopes and even use of laptop to ensure grammar keeps up even if handwriting doesn't etc. A good sendco will look at this without diagnosis - a poor one will dodge the issue.

There are some hypermobility groups in Facebook which you can use to ask adults the impacts of issues your kid cannot describe to you yet. They will also help with school... come and join us there!

RainbowZebraWarrior · 04/01/2024 21:10

I have hypermobile Ehlers-Danlos Syndrome and so does my DD (just turned 12)

DD was diagnosed last year via Genetics. I was diagnosed via Rheumatology.

Definitely get a referral for OT. Ours only took about 3 months to come through. Also, chair for assembly is paramount. The thing we kept coming up against was supply teacher / PE teacher not understanding as not knowing the background so getting DD to do things she really shouldn't have been doing. (Didn't help that she had selective mutism which has now been diagnosed) It's now written into a plan and every teacher in the school knows what she can and can't do etc.

There are NICE guidelines relating to GP diagnosis of Hypermobility (or Hypermobile Spectrum Disorder or Hypermobile Ehlers-Danlos Syndrome) and there is also a specific diagnostic criteria for the hEDS which may be worth taking a look at.

RainbowZebraWarrior · 04/01/2024 21:15

I meant to add that all Paediatric Physiotherapists can assess using Beighton score. Referral to Physio should be made at the same time as OT, as should Orthopaedic Podiatry. Physio and Podiatry should be an ongoing thing.

CormorantStrikesBack · 04/01/2024 21:31

CheersMeDears · 04/01/2024 20:44

How did you even know rheumatology review was even an option. It wouldn't occur to me in a million years. I feel so inadequately equipped!

Show quote history

I suspected that Dd had Ehler Danlos syndrome rather than just hypermobility and I knew (at the time) only rheumatologists could diagnose EDS.

GPs are supposed to diagnose EDS now, though I’m not sure if that’s different for children.

You could certainly read up on EDS and have a think about whether you think your DC might have that rather than just hypermobility. However there is a reluctance over the last few years to diagnose EDs and just say it’s hypermobility these days…..not sure why. So Dd had lots of subluxating joints, her toes will dislocate when she wriggles them, she struggles to eat as just feels like she can’t digest food so is bloated all the time, very heavy periods, bruises a lot, her ribs pop out of place. She also has coeliac disease and autism/adhd which oddly seem to go hand in hand with EDS. Not sure why there’s a connection but it’s not unusual to have a combination apparently.

Sharron66 · 04/01/2024 23:25

my child got diagnosed with reactive arthritis and hypermobility by a rheumatologist. Turns out she never had arthritis just suffers from chronic swelling because of her hypermobility, but the rheumatologists were great at dealing with it. they can be very helpful!

Minewasthesame · 04/01/2024 23:28

School have been fuck all help for us. I’ve had to push for aids to be used in the class room, I’ve paid for all of them but they get forgotten about, we had an extra hand writing work book in reception and school claim DC is in a “handwriting support group” but DC says they don’t do anything unusual from the the rest of the class!

Chrispackhamspoodle · 11/01/2024 15:22

My daughter has coeliac but has just been diagnosed with Hypermobile Ehlers Danlos and PoTs too.GP and her NHS gastro consultant weee dismissive and unhelful so we had to go private.Saw a rheumatologist who diagnosed and signposted us to a great gastro consultant as the EDS was affecting her gut...nausea, bloating.Also causes anxiety.Now on the journey of getting school to support.Our local physio also identified EDS and PoTs .Not sure why the GP didn't intend to us

Chrispackhamspoodle · 11/01/2024 15:25

Oh and the private consultant also signposted us to a physio who specialises in EDS and we will follow their suggestions for what she needs in school.I've lost all faith in the NHS after all this..and I work for them.