DD's gait is now unusual--what could it mean?

[Arabica]

Good morning everyone
DD (3.5, GDD)has hypotonia and hyperflexible joints but, since she started walking aged 18 months, has always moved around pretty well. She is prone to falling but we and OT have always thought that is more about not being able to process when and how far to lift her legs to avoid obstacles.
She has had regular physio appointments and blocks of treatment up until last summer.
She was checked over by a podiatrist last June, because she has a little toe that curls under, and had a physio check-up and review in September. Podiatrist was pleased with her gait and physio wasn't concerned in Sept.
Since Xmas we have noticed that the top of her feet seem to turn inwards when she is walking and that her hips rotate inwards too. She now falls more frequently than she used to.
At her recent physio check they seemed concerned that they symptoms have come on swiftly and are saying her gait is now definitely not normal and she is to be fitted with insoles asap. We have orthapaedic check-up on 3 March and they have written to them asking for an opinion. She had had a foot X-ray taken by genetics doctor at GOSH and physio thinks the bones in her forefoot look 'windswept'. It seems odd to have come on so suddenly--anyone got any experience of this?

Yesterday ds had an audiology appointment and when I mentioned he was low toned she asked to see his hands and feet??? really wished I asked what she was looking for but was stupidly nervous about what she might say. Sorry I haven't been much help. xx

Arabica, my dd is 6, she has Marfan Syndrome and her feet and legs do the same. She has very hypermobile joints and low tone. They gave my dd Piedro boots initially, then Piedro's with orthotic insoles. She now has AFO's and Piedro's. It hasn't completely stopped the rolling in of her hips and knees, but she does fall over a lot less than she used to.

It can take people that are hypermobile/low tone a bit longer to get used to these insoles, so you might see a few more falls to begin with. We were advised not to just put them on dd all day long at first as all the muscles in the legs have to be retrained to get used to being in the right place. This can make the legs and feet ache a bit.

My dd saw an OT for the first time in December, and she was fantastic. She said that children with hypermobility and low tone often have to concentrate so hard to just try to brace themselves to stay upright, if they then have to do an activity as well, the concentration goes and they fall over. After seeing dd fall spectacularly from just standing still (she looked like someone had whipped a rug out from under her), that made a lot of sense to me!

Thanks for telling me about your DD. Mine doesn't do the rug thing, but she trips over things that aren't there. I'm not up on the orthotics side of things--what are AFOs?

ankle foot orthosis is the correct term but they are splints some go to ankle , ds has them but he wears full lenth ones.

Ds started with piedro boots then moved to afos but due to waiting lists on nhs we went private after some fantastic recommendations on here for Dorset orthopeadic clinc.

Had intial consultation with them £120 for a hour and in my eyes was worth it was full examination anddiscussion he did not just go on my word.there based in Dorset obviously but do run outreach clinics

but yes ds neede the Afo we paid 1/2 up front and other half when we collected was 6 weeks from start to collection and ds has never had any sores/blisters from his.

pst they have fantastic xmas partys

My DD has myotonic dystrophy and has exactly the same problems as your DD what is her speech like ? She also wears AFO and insoles in shoes.

sorry quick hijack \oddjob mentioned it to ds neuro and he is testing ds for it ad mits ds fits symptons more he looked at

My dd has low tone (trunk) and hypermobility in most of her joints. Her hips and knees also rotate inwards when she walks - I've always worried about it but she hasn't been given any special support for the problem yet. She also falls quite a bit, tires quite easily and still can't do stairs or jump (she's nearly 3 now). Her difficulties are due to basal ganglia brain injury at birth.

It is interesting that her gait has changed so quickly though Arabica.

Yes, I do worry about it having happened so fast. One of the paediatricians we see always says, 'it's so good that she is acquiring skills and not losing them,' which makes me worry that this is Bad News. Her foot position seems to get more weird every day.

Oddjob, DD is very delayed with speech and it is very indistinct, but she is now labelling things around her.

Thanks for the info re AFOs. I don't know what the waiting list is like here in NE London. I think the first orthotics clinic appt will be some time in March.

try phoning them and asking tem i was told 6 weeks by physio then called them direct .even when we did get seen ot guy said yeah see you in 6 weeks office was like he always says that try 6 months

Pheonix glad ou are getting some where, please dont look at all the negatives though my attitude is they will always do the most they can. If I had listened to the docs my family would all be in wheelchairs and not doing anything.

Arabica, my DS has Hypermobility Syndrome and low muscle tone. His feet started to turn under and his ankles and knees got closer together over a few weeks in the summer when he was 2. Because he was wearing shorts it was very noticeable and by the end of the summer he was walking very strangely, on the sides of his feet. He had only just started walking independantly and it was as though his legs couldn't take the strain. When he finally saw a specialist rhuematologist at 4, the damage was done and his feet/ankles/knees will never be the same again (that makes it sound as though I did nothing, but GP refused referrals/HV said all was fine/consultant was a wally/etc, etc).

He now has to wear Piedro boots and orthotics, and always will. DS's three smaller toes on each foot are curved and are rotated outwards, which the lovely orthotics man we see has assured me will be helped by the boots, and isn't really a problem - yet, but is caused by the bones in his feet being hypermobile. Also, his little fingers are curved.

DD1 also HMS and in Piedros and orthotics because her feet turn outwards (she had to be different ). Boots are lovely, really nice, much better than I thought they would be.

But, try not to get fobbed off like I was...it took me 3 years to get DS's feet sorted, and had to beg paed. to get DD1 seen by podiatry. And as Phoenix says, waiting list are long...and then you also have to wait for the boots to be ordered in, and then another appointment for fitting, so it all takes ages, but is really worth fighting for. DS can now stand on one leg for 6 seconds with his boots/orthotics on......doesn't sound like much, but considering he can't do it at all without boots, it is pretty impressive!!

Arabica

just so you know a ball park figure if go private i paid £800 for ds AFOs and £90 for his boots though boot wise lot more choice and the \afos worth every penny as ds has never had a sore from them but do bear in mind he is a ticth and does not grow very fast so he gets moneys worth from them

Thanks for the infoit's a relief to know that rapid changes are not so unusual and how helpful the AFOs, Piedros etc are. There is no way I can afford to go private though. Can I ask, how did you feel about how your DC looked with the splints ondid you feel they were now more visibly disabled, and if so, did it bother you?

they might try piedros with neuro insoles first - they give the feet more feedback, rather than going straight for pure support insoles (dd2 had neuro insoles first for about 3 years)

have you had an ortho referral for baseline hip x-rays arabica? worth asking for if not, dd2 has annual hip x-rays for comparison now. (dd2 is low toned due to cp, but same symptoms for soooo many different issues lol)

and i would also really really recommend baby ballet if you can find a sympathetic dance teacher. dd2 adores it and her ankles and feet are certainly stronger as a result. she started at 4 unable to skip or jump (and having to use a rail for balance lol) but has come on (theoretical ) leaps and bounds. we also found a swimming class that were happy to provide a 1-1 helper. both took a while to source, but i am soooo glad we did. a case of making the most of what you've got lol.

for me i did not care

but then since ds needs awheelchair most of time it was already very obvious but yes in warmer weather when was out about when he a major it did make it more obvious. Know some dc on here have only ones up to the ankle

DD1 did something similar. More subtle because she is hemi and one side is much worse than the other. But over one summer, she pronated fairly radically and became completely knock-kneed. About the same age too, I think.

She's had insoles and kickers, and touch wood hasn't needed to progress to piedros, afos, etc... yet. Will do eventually, I'm quite certain.

She trips over her own feet too - partly because she drags one leg. And partly because she isn't good at building that mental map that we all have telling us roughly where objects are when we're no longer looking directly at them.

I think the sudden change in gait is all about weight tbh. Once they get to a certain size (and for each child that's determined by weight and joint laxity) the ankle can no longer support itself and once a slight roll starts, the leverage of that new position pushes the ankle further and further over until the final position is reached. So it's fairly rapid once it gets going.

yes ds Ortho advised me to try keep ds on the light side as weight would make differnce
luckily he seems be inclined that way unlike his mother

Arabica

Ds foot was rolling over so he was actually walking on his ankle bone then throughing knees hips out of line

give the clinic a call there is always possiablity of just seeing the orthtic consultant and getting his advice ,they did not put any pressure on me to use them .He even wrote to the nhs one see if he could get ds bumped up list but to no avail.

Arabica, the AFO's that my dd has come to just above her ankles. They're white plastic with velcro straps and are very lightweight so they don't stand out that much. I put photo's of them on my Facebook page for another Mum to see because they sound a lot worse than they are. Dd is happy to wear them with dresses and tights, so more of the splint is visible.

It doesn't bother her, and I don't think that the splints make her look disabled. If people ask her what they are, she tells them. If she was more sensitive, she could wear trousers more (or trendy legwarmers) to cover the top of the splints. Or those turnover top socks would do it - those with frills or lace round the ankle.

Thanks for all the great info and sharing your thoughts on how the splints look.
She is already wearing Kickers and I think they are thinking about just the insoles first, but the physio didn't seem very positive about them--it was kind of, 'you can try them for a while to see if they help...'

DD does not have an overall diagnosis although she probably has a rare chromosone problem as she has dysmorphic features. She also has some issues with her shoulderblades, there aren't the usual arrangement of muscles and she has dimples on her shoulders.

DD does see the orthapaedics people every year but they have never looked at her shoulders and last time they didn't bother taking an X-ray--I expect they will do this time around (appointment is next Monday).

Madwoman, I love the idea of baby ballet! I am going to ask physio if she knows anyone. DD wouldn't be able to do a class unless she had one to one so it might be better for us to find out how much a private lesson would cost.

Oh, meant to add, DD's weight has not increased for about four months and in fact she has got lighter (we were trying to wean her off her paediasure fortified milk, then she was ill for a bit and lost weight)

or a regular class, but ask if the teacher has an older girl who would like to earn some pocket money by learning to assist. (some of our old dance school girls were hoping to study for teaching certs eventually, and some helped out at an sn class too, but they are few and far between)

you aren't near aldershot are you? danielle jones ran 'ballet for you' (an sn only class) and provided 1-1 support - parents had to be in the building, but not the class.