Hypermobility - what to ask for to get referral and what to expect

[3bunnies]

Ds is 4, he has hypermobile thumb knuckles which bend right back and make it difficult to hold a pencil correctly. School (in nursery attached to the school he will attend) & HV say he needs an assessment (school said OT, health visitor said paediatrician). Going to see GP next week - where do I need to ask for him to be referred to. Paediatrician, OT, physio? She isn't the most proactive GP and I am still a bit that when referring for inguinal hernia she classed it as low priority with 2 month wait when he should have been operated on ideally within 2 weeks. I would like to go in prepared with who I would like him to be referred to in case she tries to tell me that he might grow out of it.

Is he likely to need extra help at school and how would I find out about this. The school is well equipped to manage his problems as they have children with significant disabilities and there seems to be lots of support.

If I manage to get a referral what should I expect? Also on dr Google it seems as if his hernias might be related as a connective tissue problem- should I try to push for consideration of a diagnosis which includes this - will this help him/ change how he is treated or is it just a label?

In terms of family history my mother has osteoporosis and it has been suggested that she might have had brittle bones, I have been told that I am hypermobile and had pelvic problems during pregnancy. There is some form for this sort of issue.

He has no other apparent issues academically or socially beyond an addiction to playing on computer games!

You'll probably get good advice on here but you can also join the forums on the HMSA website. Are you familiar with it? hypermobility.org/ Lots of experienced people there. I was dismayed by how many of them said that their rheumatologists didn't actually know much about hypermobility and that as a result, they had had years of incorrect treatment.

So when I discovered that our GP could refer directly to one of the few specialist hypermobility clinics in the country, I thought it made sense to start there. I figured we could get her properly assessed and then if necessary they could advise a local practitioner on ongoing treatment.

I took her to Bath, they accepted GP referrals and also because GOSH wouldn't take under-5s unless they have a particular genetic condition. They were really thorough and I had confidence in the outcome. It was well worth the long journey.

(Dd's near-inability to walk had been written off by the neurologist and orthopaedic surgeon as "just hypermobility - nothing you can do" and I wanted to find out whether this was true. As it turned out, the clinic at Bath said that my dd did have hypermobile joints but this didn't appear to be causing any significant problems. A specialist physio watched her gait and had her attempt various tasks. She thought it was not typical of a hypermobile gait and suggested her very poor gait was more likely due to coordination difficulties. Over several sessions she also gave me loads of advice on managing fatigue. So we aren't looking at hypermobility anymore but it was still really useful to go.)

Thank you, not sure if we could get to Bath. GOSH would be possible but would need to wait for 9 months. The SENCO has sourced some therapeutic putty for him to use at nursery with some exercises. They also said that they have lots of local OTs in so should be easy to schedule appointments etc. Just need to know that he is getting the right advice. Now I am more aware of it I have noticed that his finger joints are also bending back - although not quite at 90 degrees. He is getting frustrated that he can't press buttons on his toys too. I have looked on that site - it looks really useful thanks.

Thank you, not sure if we could get to Bath. GOSH would be possible but would need to wait for 9 months. The SENCO has sourced some therapeutic putty for him to use at nursery with some exercises. They also said that they have lots of local OTs in so should be easy to schedule appointments etc. Just need to know that he is getting the right advice. Now I am more aware of it I have noticed that his finger joints are also bending back - although not quite at 90 degrees. He is getting frustrated that he can't press buttons on his toys too. I have looked on that site - it looks really useful thanks.

Ds was seen by an NHS OT and an independent OT, who both reported "joint laxity". I was told he was hyper mobile, but that only a physio or paed could make an official diagnosis.

On that basis, you should ask your GP for a referral to a paed or physio. Unless there is a specific clinic as mentioned above, of course

Thanks that is useful to know - maybe go for the paediatrician and see what they say. Were the OTs useful?

(sorry for double posting earlier - silly phone)

There's a private hypermobility clinic in London - is that something that NHS can refer to at all, does anyone know? I kind of doubt it. I had a private OT who thought I was hypermobile, which would explain a lot, but it's all quite mild and my experiences at the GP to date suggest she would not really be interested in referring me on. What I'd like is some physio for my ankles/knees or orthotics/gait analysis, from someone who knows about it. Previous physio has not been very helpful. I might be able to have a private assessment but I doubt it could afford more than a couple of sessions like that. thanks.

Well the GP has very reluctantly referred him to the physio. She bent his little limbs all over the place and did admit that he was v flexible. I pointed out that I have hyper mobility as do other members of our family plus he has had surgery already on two hernias. I will be delighted if he just needs a few exercises for bendy thumbs. She reckons he is too young to do any exercises then started going on about not making any decisions about surgery on his joints ??? Anyway she agreed to talk to the physios and see whether they will see him at the same time she probably refers me due to munchousen's by proxi I just kept saying that the school and health visitor thought it was necessary and that I wanted him to get any help that he could as early as appropriate and hopefully set up support for when he starts school in September.