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HELP PLEASE - EHLERS DANLOS - SPLINTS PANIC

(9 Posts)
iwearflairs Tue 16-May-06 15:41:02

Recently DH and I noticed that DS's v.v.v hypermobile ankles looked as though his AFO's were rubbing in the wrong place, so duly went to physio/orthotist to show the problem. Now have been told AFO's he has been wearing for 2 months are too loose and consequently are not containing his joints in the way they should. They are taking them away now to repair them. At his next review the orthotist said he should move down to a foot orthotic, which makes me think they misjudged it in the first place.

Am A) amazed they weren't fitted properly in the first place
B) horribly worried that he now won't wear anything at all for a whole week.

Is this just the way it works and am I worrying for no reason?

I never feel that the physios/orthotists are really levelling with me. I don't know whether or not I can demand the splints back while they make a new more appropriate splint, or whether it won' t make any difference to leave him without support without a week. He is growing so fast and they have b*ered about getting him into the splints for so long.

DS (2.2) has suspected (not diagnosed) Ehlers-Danlos Syndrome - anyone else have experience of this? We are seeing the geneticist next week after a year of doctors, etc saying it will sort itself out, oh dear it doesn't seem to be sorting itself out, actually we don't really know why this is happening.

Sorry to rant. Any advice much appreciated.

reiver Tue 16-May-06 22:00:37

Getting splints (and orthotics generally) to fit seems to be rather hit and miss in my experience too. But you don't want something that isn't fitting properly so perhaps it's better to be without for a week rather than wearing something uncomfortable I wonder?

lou33 Tue 16-May-06 22:04:05

it depends on what type of ehlers-danlos he has there are 11 iirc

also eds is hard to dx in the early years as children are naturally v hypermobile, so they tend to wait and see for a bit

some types can be dx'd by biopsy, some only by examination

who are you seeing, dr pope?

i think doing without for a week would be better than having the wrong splint myself

2shoes Tue 16-May-06 22:41:14

sorry being a bit dense here are they like affo's/daffo;s as I thought they were moulded to the sahpe of the foot.

iwearflairs Wed 17-May-06 10:50:49

Thanks everybody, much calmer this morning!

2shoes They are AFO's and are moulded to the foot but in this case there seems to be so much room allowed around the ankle as to allow his foot to roll almost as it would if he wasn't wearing any. It's still an improvement on not wearing any at all, but it's not transferring the weight as it is supposed to.

Thanks Reiver - I am feeling a bit more sensible about it now and think you are right, it is probably a bit hit and miss but may check with the orthopaedic surgeon that the bones are still where they should be.

Lou33 - we are going to see Dr Child but have noticed Dr Pope's name on various websites. Do you go to him? I think a biopsy is planned.

lou33 Thu 18-May-06 14:52:52

i saw dr child before dr pope, long long time ago

dr pope is the number one person in the field tho, but both v clued up and nice

good luck anyway

Blu Sun 21-May-06 11:58:40

Sympathies, iwearflares - ime orthotics appta are responsible for much ganshing of teeth and hair loss.

I hope they right things come back, properly fitted.

iwearflairs Tue 23-May-06 16:32:38

Incidentally Blu - can't find your earlier thread - but wanted to add, belatedly, that I thought your initial decision was very wise because it was both the most conservative and compassionate thing to do. I hope you are feeling clearer and better about your DS.

Blu Wed 24-May-06 14:03:29

Thanks, Iweraflairs - i added an update to that thread, here

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