Here some suggested organisations that offer expert advice on SN.
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Ds's knees gave way...(12 Posts)
I would definitely mention it to the neurologist if there's any suspicion of epilepsy... my ds used to have funny absences and sometimes just momentarily sink to his knees or have a little blank moment, or a tiny jerk, and then carry on again as normal.
turned out it was epilepsy related.
That sounds more like a neurological check than one that would pick up JHS. I have to do most of those tests at my neuro appointments - they check if you have equal strength on both sides and if you are presenting any signs of tremor.
Agree with frazzled, I don't think that examination would pick up hypermobility.
That doesn't sound like it would pick up hypermobility! www.hypermobility.org click on hypermobility then diagnosis then beighton score. This shows you what hypermobile joints can do. But joints also do a lot more!
Hello, thank you for the replies. He was recently by a paediatrician. Who said;
xxxx has normal cranial nerve examination and normal cerebellar examination aside from slightly slow past pointing. He has a normal examination as far as tone, power and reflexes in his limbs are concerned and a normal cardiovascular, respiratory and abdominal examination.
It was an examination were my Ds had to walk in a straight line, touch his toes, push on the paediatricians hand using his hands and legs, touch his nose with his finger then touch the mans finger.
I'm guessing that this examination would of picked up any problems with hypermobility??? or would it be an OT that would pick up on these things?
Op, your last post sounds very similar to my ds2 and he has dx Joint Hypermobility Syndrome. His legs often just give way underneath him as he's walking. It's mainly his knees and ankles, but sometimes his hips as well.
Frazzled, I took ds2 to the GP about night-time leg pains and because he was complaining that his hips, knees and ankles hurt after exercise - even just walking. He referred to the community paed, who dxd 'lax ligaments' and referred to physio. Physio said 'lax ligaments' is a symptom not a dx and told me he fitted the criteria for JHS. We also saw head OT for our area recently who agreed it's JHS.
The only thing is, there hasn't been/isn't any help or support. Physio were hopeless only a short course and admitted they didn't really know what to do for him other than suggest he gets fit. OT were very good at suggesting mobility aids and referred to SN dentist for help with toothbrushing and did go into school to check seating and speak to the SENCO and teacher but that was it.
Ds2 doesn't have orthotics, because according to physio he doesn't have fallen arches, so they wouldn't help. Whereas I did have them as a child, but I have additional problems with rotated thigh bones, not to mention, my physio says she has never met anyone with such low tone in their feet. I have a feeling dd will need orthotics, because she significantly over-pronates and I can see her walking on the inside of her ankles instead of the flat of her foot.
He has 1:1 Pilates lessons, initially working on building and stabilising his core and moving on from there to strengthen muscle groups to reduce the over-movement, iyswim, of his joints.
I am similar to Polter, in that I didn't put two and two together about my own childhood joint issues until ds2 was dxd and felt awful when it dawned on me what was going on for him and how long he'd been suffering (he was 8 when he was dxd).
Neither ds2 or I respond to local anaesthetics and we are all easily bruised - so again similar to Polter.
I now suspect dd (4) may also end up with a dx at some point. She is very hypermobile but it wasn't causing any problems until recently. Unfortunately she is now complaining of sore hands after writing/drawing and having trouble with her ankles.
Ds1 is slightly different. He has ASD and hypotonia which is particularly bad in his core and upper body. He does have hypermobile joints, but doesn't have any pain or suffer sub-luxes and dislocations like ds2, so wouldn't be considered to have JHS.
I think I might go back to GP. He has problems with ankles giving way A LOT, sore wrists when writing, co-ordination (not wonderful but not very bad either) pains in legs after exercise/walking a distance even when wearing his orthotics. He's tall, skinny, gangly really.
frazzled ds's OT picked up on ds's 'bendiness' and referred him to the children's physio who assessed and diagnosed. So, all we have is a letter from the physio describing which joints he is hypermobile in, everything except elbows.
Me being a terrible mother, i had failed to realise that the pains in his legs he was describing at night were in fact related to the numerous assessments for, and never diagnosed, joint problems I had as a child. It was the physio taking a family history that made me finally realise why I had and have problems.
The thing is, quite a high number of the population have hypermobility of some type, for most it doesn't cause any pain, so dx isn't necessary, eg ds gets leg pain if he does a long walk and/or doesn't wear his orthotics, but his hands which bend right back don't get pain, even when he does a lot of writing The biggest problem for ds (and me) is the proprioception problems caused by hypermobility, extreme clumsiness, I spend a lot of time with my ankles strapped up as they sprain so easily, and easy bruising and scarring as well as anaesthetic problems.
polter - do you have experience with getting children diagnosed with hypermobility? Did you find it easy etc? Myself and 3 of my dc are all hypermobile. Dc4 VERY hypermobile but they won't officially diagnose as he's only 8 It's causing all sorts of problems.
Has he been checked for joint hypermobility? Seems very common to have this and/or low muscle tone with ASDs.
According to a private podiatrist I see with dc there's no such thing as growing pains. The pain is there due to some problem, be it small or big. Mine all have problems with hips/knees/ankles not being in-line due to bones rotating inover. They all wear orthotic insoles to correct this problem. All have a different prescription, dc4 being the worst affected. His ankles give way all the time like your ds knees. I'm still trying to find something that can be done about it
Ok so my Ds 8 (AS) has always been quite clumsy. When we are out walking he always tends to hold my hand and we chat as we go, the majority of the time he will trip/stumble (which is the norm really) and I tend to catch him due to holding hands..........WELL yesterday we were walking along (holding hands) and I just happened to be looking down towards his feet as we were talking and witnessed him do a kind of swift 'stoop' as though both his knees had just give way on him, because I was still holding his hand he immediately stood tall again as though nothing had happened and just carried on talking/walking. When I asked him what had just happened to his legs he commented, very matter-of-factly, that his knees just stop working and it happens all the time . I have never noticed this happen before! He has complained occasionally about his legs/knees hurting but tbh we have always put it down to the fact he is always on the move (he is a jumper and flapper) and also good old growing pains. Does anyone else's Dc do this? We have an appointment with a paediatric doctor soon due to possible ?epilepsy, should I mention this? He has had some nasty bumps to the head over the years because of his falls. He just never seems to get his hands out quick enough to break his fall, now I am left wondering if this is why.
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