Can't seem to find one and was hoping for some advice re ds2. Sorry this is so long, but didn't want to miss out the history, which is relevant to the current situation.
Ds is 12, has JHS, constant, daily pain, regular ankle subluxes and sprains, neck, shoulder, hip and knee problems etc and is incredibly stoic.
He was in a lot of pain across just about all joints over the weekend. Sent a letter for his new PE teacher on Monday morning, to remind her about his dx and what he should/shouldn't do, but also to give her the heads up that if he said he really couldn't do PE that morning, then please would she excuse him and finally asked her to remind him he could have a second dose of painkillers from the school office just before lunch.
Opened the door when he arrived home to find him leaning on the door frame with tears streaming down his face, in absolute agony.
He had done PE, as he knows how important fitness is, but opted out of some of the higher impact moves. Then, his PE teacher was so concerned about his pain level that she took his PE kit off him, as she didn't want him carrying it around school all day. Unfortunately he didn't have the good sense to go and get a pain relief top up, but he says at that point the pain was just on the bad end of normal for him and he knows there's little point in medicating for that.
Then, half way home, he suddenly had a massive pain in his ankle, without a twist, eversion or sublux, in fact no accident or injury at all. He says it was agony and it was as if someone flicked a switch and the pain started as agony and continued to stay at that level.
There is no swelling or bruising, but he can't weight-bear or walk on that ankle without massive pain. Kept him home yesterday, raised, iced and kept up pain relief, but it was no better this morning. Rang the GP's to be triaged, but they advised A&E. Four hours at A&E and an xray later and we were told it was either over-use or a sprain and to continue raising, icing and pain relief, plus do the usual sprain exercises.
Problem is, we only saw a trainee the whole time we were there. He was very unsure and kept nipping out to ask advice. Almost sent us home after a quick triage, but then went and checked with a superior, came back and said he wanted it xrayed. When we explained ds has JHS, he just said oh, ok he's hypermobile - to which I said, 'No he has JHS, so that means daily pain, exhaustion and other issues and he's usually extremely stoic about pain, even quite bad sprains, so this is totally out of character for him.' I don't think the nurse even knew what JHS was, let alone how to take that into consideration.
So, basically a waste of four hours and no further forward.
His pain is actually inside the joint. None around the side or back of his ankle, but when the nurse (repeatedly) pressed his fingers into the gap between foot and ankle, ds nearly hit the roof and dorsiflexion ramps his pain up to a 10+/10 according to ds. Based on this and the lack of swelling/bruising I suspect he has either an ankle impingement or synovial capsule inflammation, brought on by chronic instability and regular sprains and twists. Impingement seems more likely, with the pain starting as if someone flicked a switch. If I'm right, the exercises the nurse told ds to do are totally inappropriate and he needs a referral to sports physio, plus a podiatry assessment and probably a brace and/or orthotics while he gradually returns to normal movement.
I also asked them what to do about school, as not only can he not walk the mile and a half there (I can't drive) but there's no way he could walk around the school all day either. The nurse's response when I asked was, that's entirely up to you. Surely if their advice is to keep it raised and ice regularly, he can't attend school?
My instinct was to call the GP again straight away, but then I know, with us only having been to A&E this morning that they're likely to say wait and see how he goes.
So he's on the sofa, with his foot in the air, having it regularly iced and getting up for a potter about every 10 minutes in 60, as well as doing the exercises that don't require dorsiflexion to make sure he's not allowing it to seize.
What are my chances getting him actually seen by someone who knows what they're doing this time? His initial dx from a paediatrician was 'lax ligaments' and we were then sent to general physio, who admitted they knew nothing about hypermobility in children, but took advice over the phone from another, larger physio department in the same trust, gave him a totally inappropriate exercise plan and eventually told us he fitted the criteria for JHS rather than just hypermobility, before discharging. I asked for a podiatry referral and the paed refused, because although he has flat feet he develops an arch when he goes onto his toes . Surely they should also be considering gait and ankle stability? School nurse referred to OT. We were lucky enough to see the head OT, who is lovely and very well respected. She was furious he hadn't got a proper dx of JHS, insisted that was the correct dx and went into school to assess his classroom and advise on things like not sitting on the floor cross legged, having a chair for assembly etc and tried to get him referred to the children's hospital, who apparently have a paeds pain clinic. They refused the referral, as we'd come via a different NHS pathway. So we were left with no help and no formal diagnosis, despite both the trust's own specialist physio and the Head PT agreeing it should be a dx of JHS.
Dh has the opportunity to add ds to his company health insurance policy, with a full history disregard,next month. What's the likelihood of us being able to be seen by the right people to help ds privately and does anyone have any advice who should we ask to see if we do add him?
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Is there still an EDS/Hypermobility thread? I need some advice re ds2.
21 replies
moosemama · 28/09/2016 16:31
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