Hypermobility and pain in legs

[minko]

My 4 year old is really suffering at the moment. He has been diagnosed with hypermobility and has orthotics in his shoes. It's since I have stopped using the buggy recently that I have really realised what a state he is in. He complains of pain in his knees on even the shortest walk and I end up giving him piggy backs everywhere. For practicality I am thinking of getting him a scooter to make it easier to get around, well faster anyway!

I have been giving him a bit of Calprofen recently which seems to help a bit but I can't be giving him that all the time... We are seeing the doctor tomorrow - anyone any experience of this and what questions should I ask the doctor and what specialist should we ask to see??

Many thanks...

hi, sorry to hear your ds is suffering. my children all have ehlers-danlos syndrome and theres a brilliant thread on here 'eds hypermobility'.

My ds (4) is still in a buggy and falls alot and suffers dislocations, he has physio but gets terrible leg/back pain.He has nurofen/calpol but it sometimes doesnt help.It can be really hard its worth trying to get a referral my dc are seen at gosh and my local hospital.

We were referred to a paed specialist recently who simply confirmed the hypermobility diagnosis and said he may have 'some pain'. There was talk of physiotherapy, I think I am going to push for that. Also need advice on long-term pain relief.

Am going to look at the thread you mentioned, thanks!

yes def push for more help, 'some pain' isnt the most helpful comment as the condition can vary day to day sometimes my dc are ok other days in agony and cant walk at all.

We get physio and occasional courses of hydro. dd1 had a 2 week rehab stay at gosh when she was 3, there is help out there but unfortunately a lot of doctors dont seem to know much about/how to best deal with hypermobility and its associated problems.

My son's 11 and has this. He see's a physio but she teaches him pilates and this has really helped. He's still falling/stumbling/in pain though. I've spoken to the GP this morning and she said the physio is all they can really do. A hot water bottle helps when he's at home, then there's paracetamol.

I'm filling in a form for disablilty living allowance for him as he struggles to get home and I have to go with him to and from school to make sure he doesn't fall into the road.

sorry to hear that belle 2 of my dc get dla it is definately worth applying for it, i didnt untill dd1 was 4 as for ages i tried to just 'put up' with how difficult things were getting.

There are lots of other things besides physio, we have had hydrotherapy and all 3 dc wear special boots with orthotic insoles which help with their ankle stability. dd1 had a 2 week rehab stay at hospital which was amazing.

good luck with the dla form just try to put as much detail as you can and if they refuse the claim appeal against it as i struggled at first to get dla awarded

I have the form (quivers) He needs help outside as he's unstable on his feet, although he has improved. It's embarassing for an 11 year old to have to hold his mums hand to stop him falling into the road. They have been useless here, I pay for the physio. He's finding it hard getting up the stairs at school at the moment so this is what she's working on.

My stepdad has hypermobility syndrome, he has found that physio excercises and also hydrotherapy has been very helpful. He also changed his diet quite drastically a couple of years ago and that has really helped with the levels of pain he has and also has helped him to be able to do repetative movements like digging (he is a keen gardener) without being in a lot of pain later. He cut out gluten and several other things including some dairy i think, and this really helped. If you would like me to find out what diet it was, I can, although I know it can be very annoying when people suggest that all health problems can be solved with changes to diet!!

Is there a hydrotherapy pool near you? sometimes they run groups in the evenings with physiotherapists, and that can really help. DH has ankylosing spondylitis and there is a group locally that he can join.

Good luck, I hope you find something that can help ds. x

Cutting out gluten's a good one. I've just switched all of his bread and pasta to wheat & gluten free, I worked out that it was giving him a dodgy tummy.

No idea about a pool. Off to google.

there must be some link with diet as all 3 of mine have terrible allergies (ds the worst-milk,egg,nuts,fish and shellfish) i wonder if there are other things too that i should cut out but that doesnt leave much left for him to eat! They all suffer with tummy problems as well (pain ,constipation ) one physio mentioned that hypermobility/eds can affect the intestines as well

Many thanks for advice. I will talk to the doctor about physio and hydrotherapy. They always tell me that he needs to do lots of exercise to strengthen his muscles, but that's hard when walking hurts! (He does enjoy soft play centres and swimming though). Thankfully from what I've read he doesn't seem to have the condition as badly as some but it is still worrying how this is going to impact on his life...