Hypermobile, knocking knees, leg problems.....

[Endler32]

Both my dd's are diagnosed as hypermobile, dd1 also has hypotonia and both have low muscle tone.

Both girls have been wearing insoles for a few years, both signed off from OT and paediatrician.

Dd1 is 11, her feet have not grown for almost 2 years ( she is a size 1), a year ago I noticed a lump in her foot, apparently this is her bone where her feet roll ( bone has been pushed up ), her feet and hips roll a lot but insoles are helping.

Dd2 is 9, when we saw orthotics a few weeks ago it was picked up that he knees are knocking where they turn inwards, also she has one leg longer than the other due to her hips not being level.

I'm worried about both of them but I am unsure what I need to do. Do I ask for a referral from gp? If so, who too?

Should I be worried that dd1's feet are not growing dispute the rest of her growing very fast?

Will dd2 need surgery on her legs at some point?

I have hypermobile dd and we found physio excellent and also independent OT for a one off consultation for ideas. GP should refer for physio. It took some discipline to keep plugging away at exercises with small controlled movements.

With hormones starting for dd1, it will be harder because the hormones make the joints more floppy to allow the bones to grow,

The lump in the foot I would definitely check.

There are consultants who specialise in hypermobility so you could try a referral to one of those, too.

Good Luck

She has had a X-ray on the foot, I have not discussed the results with gp, was just told on the phone that nothing was found , our physio and OT work together, they were both last seen about 18 months ago and then signed off. I will ask gp to refer them back.

Sounds like a good idea. What does the GP say is causing the foot lump? I mean, it is obviously good that it is not something bony that shows up on an xray, but it guess it would be nice to know what else they can find out by the standard scan/biopsy etc. Or maybe not - you know dc best

You could ask the GP to refer back to physio and podiatry. My dd has a mixture of low tone in arms/ core and very tight tone in legs plus leg length difference and pelvic girdle issues. She has recently been signed off by physio but has an exercise plan for daily stretches and specialist equipment from OT - chair and table suited to her height for proper support etc. She also has to wear boots to support her ankles to try to prevent her feet from rolling in.
I would think you definitely need to see a specialist paediatric podiatrist regarding the foot lump.

A podiatrist would be a good idea, I think.

Ds has low tone in his legs. He tiptoe walks (he's 15) an is often in pain and the physio was absolutely useless.

I think the lump is bone ( we were told this when being fitted for insoles ), I think I was told by gp receptionist ' it's nothing' as they were looking for a lump rather than bone, I havn't had a chance to discus the results of the X-ray with the gp. Apparently it's common for the bones to move to compensate for the foot rolling inwards?

I will take them both to the gp in easter holidays, get the X-ray results are referral back to physio, just seems a constant battle, dd1 has been referred back to paed several times and discharged, dd2 is meant to be still under physio and OT but they have disappeared and havn't seen her for over a year.

Where abouts is it? If it's on the inside, just above her heel then it could be the bottom of the fibula, the bone going down her calf?

upload.wikimedia.org/wikipedia/commons/1/14/Fibula_-_anterior_view.png

Sorry, outside not inside.

No' it's on the top of her foot ( the inside ), the bone that goes down towards her big toe but half way along the foot, hope that makes sense, I can try and get a photo later.

A photo would help. There is a bone on the foot (navicular), it can be a bit more 'sticky out' in some people www.emoryhealthcare.org/sports-medicine/img/metatarsal-stress-fracture.png A podiatrist will be able to help with her feet, legs and pelvis.

Muscles and tendons going from the foot, up the legs, into the pelvis and up the spine are all joined. If there's a weakness in the left foot, the other muscles will compensate for this which knocks them all out of sync and can cause pain and weakness elsewhere, like in the pelvis. When they noticed that she has one leg shorter than the other, did they measure them as she was lying down and when she sat up? It's possible that this is connected to her feet. Think of your body as a set of scales. If you add a little weight to one side, the other will rise. What's probably happened is that the muscle in her pelvis above the shorter leg has tightened because it's compensating for the weakness in her ankle. She needs insoles which are slightly higher for the leg which is shorter to stabilise her pelvis a bit more (think of the scales). Pilates would be really great for her to do as it will help to balance her core muscles. It's a gentle exercise so it shouldn't be too difficult. Ds has the same issue (apart from the lump on her foot). He has flat feet and the ligaments in his feet are loose, so his foot sprays out slightly when he's walking. Because he struggles to walk the tendons in the back of his legs are tighter because he's working so hard to stay upright. Because these are tight it affects his hips and spine, so he's lordotic (there's an inward curve at the base of his spine). He was really unstable on his feet and he'd fall over all the time, and his ankles/feet would become painful really quickly when he was walking. Pilates has helped, as have the insoles, but it's never really gone away. He's almost 16 now. His feet didn't really grow either but they have now so maybe she just needs time to catch up

Hope this helps.

I think the man we see for their insoles is a podiatrist, this is who told us it is bone. My dd with the lump is not the dd with the different length legs ( sorry it's confusing ), the lump is on the foot that rolls the most, the other foot has a slight lump but this is just considered normal. When we first spotted it we went to the gp and at first they suspected a ganglion which is why we were sent to X-ray ( to see if it was a lump )., I will try and get a photo xx

Dd1's feet

Got it. I do think that pilates will help both of them as it focuses on core muscles and helps with balance and muscle strength. Insole people can be othortics or podiatrists (they are here anyway). Podiatrists know more about the lower limbs, the orthotics dude didn't assess ds at all and just made the insoles. Does the lump move or is it fixed? Is it hard or a little squashy? Is it painful? A picture would help

Ah, they look very similar to ds's feet but her arch on the left leg looks a little too raised (on the side view) which could indicate that there's a little tightness there. Ideally, the side needs to be on the floor when she stands with the arch inside. The lump on the image of the back of her feet looks like it's the base of the tibula. They must be painful Have they suggested that she wears boots? Sorry if you've already said this.

May be a good idea to ask your GP for an orthopedic referral. They can sort out a gait assessment, which will look at how she's walking. Ds has a slight femoral rotation which was picked up from this and possibly makes his legs, ankles and feet worse, and played a part in his frequent falls.

en.wikipedia.org/wiki/Gait_analysis

Femoral rotation www.fix-knee-pain.com/basic-postural-problems-internal-rotation-of-the-femur/

Has been suggested that she wears supportive footwear but this is hard work with a 11 year old, she won't wear kickers ( not comfy ) and Dr martins rub, she usually wears walking boots/trainers and wears boy shoes for school. The lump is hard, doesn't move, she's had insoles for 4 or 5 years now, they do help but she gets a lot of pain in her ankles, feet and legs ( doesn't help that she has hypotonia too ).

lady ... that's a great link.
endler ... 2 of my dc are very hypermobile, they've had no OT or anything. We pay privately for orthotic insoles. They're far better than the NHS ones we were provided with. Our podiatrist measure the feet, the angles they're out of line by, the length to the knuckle bone etc. They make a massive difference to my dc. My dd also has bi-lateral femoral neck antiversion. NHS want to break her legs/hips and re-set all the bones We've persevered so far with insoles. Our podiatrist has given dd exercises to do to correct her pelvic tilt which is making the problem even worse. The main things are to strengthen her core, and to correct the pelvic tilt. Your dd could be very similar. I remember being really shocked when we found out the cause of dd's knees and ankles knocking together actually came from her hip area!

Insoles have got better over the past year, they now take moulds of the dd's feet. We pick dd2's new insoles up on Tuesday so I'm waiting to see what they say and if they give her one insole with a wedge to help with the gait, hopefully they will tell me if she needs a referral. Both dd's have been seen a lot by OT and physio over the years but have now been discharged, dd2 still does exercises every day with her TA at school who has been trained by OT ( this is in her statement ), it feels like they are saying 'we have done all we can so your on your own' even though both the dd's have life long conditions which are likely to get worse as they grow.

Dd1 on the left, dd2 on the right, I don't think the knees look to bad but was told dd2's knees and hips turn.

We don't get a great deal of help either, I've had to learn about this myself and find him the right care. They also wanted to cut his femurs in half and reset them, that's why he had the gait assessment. It was useful and showed where the issues were, and that surgery would be unhelpful. The best thing I've done for him was pilates, this has helped more than anything else. He can only walk a few meters without pain still though, I've applied for DLA for him twice now and they won't award him the mobility element, I'm not sure why as it's unsafe for him to walk as he ends up in the road.

I can see your DD's knock knees, they must be painful for them

Both dd's get lower rate mobility, dd1 gets it because of her hypermobility and hypotonia, dd2 gets it because she runs off , both dd's have ASD, dd2 is more severe but because of the ASD she doesn't tell us if she's in pain and can take quite a lot of pain, dd1 is the opposite and moans about being in pain every day . Dd1's friend had surgery a few months ago to put plates in her legs but I don't think it's a route we want to go down with either dd's, I don't think straightening anything will work as their bones are so bendy that they will just bend back a year or so after surgery.

Try pilates, that should help. Surgery isn't the best option so it's worth looking into the alternatives. Hydrotherapy is a really gentle exercise too.

I've just had to renew ds's DLA. They awarded him the medium rate care a couple of years ago so I'm hoping that they will award the lower rate mobility too. I escort him to school when I can (all of the time unless I'm working), he's dyspraxic too and has a social skills delay, he didn't have enough traits for ASD as he has no obsessions or need for routine. They diagnose here and then leave you to it . His hands are like his feet, the bones just spray out IYKWIM. His finger joints bend back if he holds a pen/fork/knife so he has to use a laptop at school.

My DS2's feet look like your DD1's ..only worse. He started with insoles.. then insoles in Piedro (orthopaedic) boots ..then heel cups in boots..then short (ankle high) splints, and since he was 7 he has worn full AFOS, with one splint built up slightly to compensate for his leg length discrepancy. They were going to do surgery to stop the longer leg growing..left it too late so his growth plates had fused :/ He has hypotonia hypermobility and ASD too. EVery growth spurt has also caused tightening of the achilles and a tendency to walk like a downhill skier 'bend zee knees!' style.

The effects on his feet and legs generally have worsened with increasing size :/
I honestly thought that by now he wouldn't need orthotics of any kind but it looks like he will be in splints forever. He is 17 now... 6 ft and only 9.5 stone so very light for his age but his legs have really suffered. He never says anything unless he's in a LOT of pain.

I think you should be persistant.. ask for referral to orthopaedics so they can both be reassessed.. they need to be seen there and then perhaps back to orthotics for more support.