Hypermobility seems to be worsening, who do I talk to?

[ChopsTheDuck]

Paed is now on an as and when basis and not sure if it'd the best person to talk to. She seemed shocked that he had pain in his joints, so don't think she knows much about HMS at all. She seems to deal more with the ASD side of things. She said I could speak to the GP if he is in pain.

He is under an OT, waiting for therapy that seems to never be coming. He is on the records with a PT, but not seeing them at present.

Please can anyone advise who I should talk to first? The times when he can't walk at all seem to be getting more frequent and it is worrying me. His legs just seem to turn to jelly and he can't weight bear, or if he can he just keeps falling.

I want to know if it is normal, if there is anything else we can do to help him, or if he needs to cut back on exercise or do more OT exercise? I'm clueless basically!

does he do any non weight bearing excersise at all ?swimming

first port of callwould try calling see if you can talk to a physio over the phone if cant see one

if your gp anything like mine they say give him calpol/ibprufon.That was as much help as i got .

this sounds horribly familiar

dd's paed kept repeating that her joints shouldn't be hurting like this; she seemed to be implying that if it shouldn't happen, then it couldn't happen

she rang me up very apologetically late one evening after she had got back from a conference at Great Ormond Street hospital and been given the real lowdown on what hypermobility syndrome can do

if you can get a referral to Great Ormond, they are the real experts

or failing that, the ?Nuffield clinic in Oxford work with hms, and there is a professor in Leeds whose name I can't remember

check out the Hypermobility Association forum; they know a lot

your ds sounds very similar to my dd

she has been helped by physio, OT, she has to pace herself so as not to overstrain herself and she uses a wheelchair for back-up

even so, she does get pains and is not always able to weight bear

ds is a milder case; he has pains in his feet and knees but is usually able to weight bear- so far?

how old is your ds?

for both of mine, the pains started with the growth spurt around age 7

intresting wonder if Gosh would see ds even though hes 3.10 .He defintley has really ad days though one dr did ask if hes playing on it erm like how many kid that age would sit still by choce

that is so like doctors phoenix

dd is still emotionally messed up from all the times I was asked in front of her 'what is she getting out of this?'

I was so relieved last Friday when ds rolled up his trouser legs and the paed could see all the bruises and scratches on his legs- even to her it was pretty obvious that here was a little boy who was not being mollycoddled

Ds will be 7 next month. It's def worse if he over exerts himself. He does do swimming but more often than not he can't walk after a lesson. I have to be careful opening the car door as a couple of times he has just flopped out onto the drive! Last week he was running in the garden for an hour or so then couldn't stand. Fell and hit head twice.

Thanks for the advice, will call the physio and check out the HMS website again. Maybe I need to print off some stuff or email some links to his paed.

Btw that is what our paed said - give him calpol. I don't want to keep giving it long term though and not going to stop his joints buckling.

Does he have insoles and piedro boots, Chops? Ds has both those and it really seems to help. Orthopaedic department might be your next port of call (you'll need a referral from your GP).

Dd tells me calpol is useless anyway; doesn't do a thing for her pain so not worth the trouble of opening her mouth for. At 12 I think she is old enough to decide that for herself.

dd uses the lift at school because of the falling issue: we feel she is no longer safe on the stairs

do either of yourdc get the dislocations with it?

subluxations, not fullblown dislocations

nothing big enough to be seen on the outside, but dd's chiro used to say she could feel that the joints weren't in the right place and would move them back

He doesn't have any support at all like that. His ankles are actually a bit better than they used to be, though still far from typical.he has mostly stopped walking on his ankles. His knees cause the big problems atm, and hips and pelvis.

His fingers dislocate easily and we've recently had problems with his shoulders bending so far back a crease appears in the back of it which takes a while to fade iyswim. Not sure if it is popping out or not, but looks thoroughly gruesome!

ds has low muscle tone so falls a lot and pops his he had one at nursery he was falling teacher grabbed his arm and his shoulder went by time i got there not sure who needed ambulance more him or her

yeah were waiting on fittings for splints tohelp ankles

I think you definitely need to see the orthopaedic department, Chops. Even proper ankle support may help with his hips and knees: a bad gait will affect the whole rest of your body. And they can do splints and things too.