Orthotics???? - Anyone with any experience?

[MandM]

Been with dd this morning to her first Orthotics appointment. To be honest, I'd never even heard of orthotics until the physio referred us to them. She noticed at dd's last physio appointment (her regular 20 minute session every six months!!!! - although I think I'm meant to be grateful as that's 20 minutes more than she gets with an OT ), that her right heel (her CP affects her right side) wasn't always touching the floor when walking with her frame. The orthopaedic surgeon we see each year had noticed some slight tightness in dd's heel/tendon but not enough for any intervention at that stage but she has just had a major growth spurt.
Anyway, we went along this morning to the physio unit at the local special school (I was so impressed with the school BTW, it is so sad to think that they are closing amazing places like that) and saw two orthotic specialists. I was adamant from the outset that I didn't want dd to have daytime splints as she has just really 'found her feet' and her mobility in general has improved so much recently that I din't want this being impaired in anyway for what seems to be a fairly minor problem, (in relation to all the others!) I was so proud of her as she was really good whilst she was held down so that they could 'test' her legs/feet, take measurements of all sorts of things and then 'cast' her leg. I thought the cold, wet plaster would result in screams and tantrums but she thought it was highly amusing and when they cut off the cast she wiggled her little toes and said 'All gone now' . The upshot of all this is that she has a 2cm leg length discrepency, which apparently becomes exaggerated for short periods after a growth spurt. They are making her a night time splint to try and put the foot:leg angle back to 90 degrees - we got to pick the design and went for pink and lilac butterflies (although dd strangely went for planets and rockets at first!!!). They are also going to insert an extra layer into her right shoe so that the discrepancy is minimised when she is walking, so I have to pick a pair of shoes that she can wear most of the time. (Rang dh at work to say that this is ridiculous - if I choose her purple boots she'll only be able to wear pink and lilac outfits, if I choose her trainers she will only be able to wear casual clothes, if I pick her red patent shoes she will only be able to wear her black, red and white outfits etc, etc, ......and he apparantly thinks it is me that is being ridiculous and missing the point ! MEN - they just don't have their priorities right!!!!!!!!)
We are going to have to have reviews every 3 months, which is another appointment to add to the cycle and just see how it goes.
Basically after all that, for those of you that haven't fallen asleep, does anyone have any experience of leg splints and built up shoes with their dd/ds? I obviously want to do everything possible to help dd to improve her walking and get her walking independently ASAP, but sometimes just feel like we end up getting swept along and agreeing to things that I don't really know the pros and cons of.

Hi MandM - my dd has a leg length discrepancy of 3cm. It was caused by a clot post open heart surgery. She has poor circulation and no/faint pulses. Dd walked late and was very unsteady, she walks with a limp when barefoot. As you describe, her heel on her right foot wasn't always in contact with the ground or if it was her other leg was thrown out to the side. Whilst the difference looks alot in a little one (not sure of your dd's age) as they grow itf becomes less noticeable as its a much smaller percentage of the overall height ........does that make sense?

I don't have experience of splints (there's loads here that do) but I do with raises. Personally I don't like raises on the inside of shoes - I know they have to do inserts sometimes but they can make the shoe feel very uncomfortable. Dd has hers put on the outside and they can usually do up to 3 cm on any decently made shoes. They remove the bottom sole of the shoe add the raise and sandwich the sole back on so from underneath the soles look the same. She used to have black patent boots which she could wear with anything. She's 11 now so things have become a little more difficult

It is important to wear the shoe raise as much as possible as it will protect the back and hip from future problems. An uncorrected discrepancy can cause a curve in the spine.

HTH

Sorry mean't to say that we usually have school shoes and trainers done too - its not unreasonable to ask for two pairs to be raised (the orthotist wouldn't wear one pair all the time would they?)

Hi Potty1

Thanks for your post. DD is 4 next month and her discrepancy sounds similar to your dd's. The insert they are going to do for us is on the outside like you described, he showed me a pair of trainers that they were delivering this morning for a little boy and you couldn't even see where the raise had been inserted. I think something neutral like black boots or trainers are going to be the best things to go for so that they can be worn with everything.
I just hope the splint has a padlock on so that she can't pull it off during the night!

My DS has orthotics in his shoes and trainers and they have helped him a great deal.
He had a lot of pain - as the physio said that his feet were collapsing inwards and the muscles and tendons were suffering because it that.
the orthotics help push the feet "outwards" back to the correct angle - and now no pain
HTH

Sorry, I haven't got much knowledge but others will be along later with more...for now...

...my dd(3) who has DS was fitted with AFOs in November. I can remember sitting there thinking about what colour to choose too I almost opted for the plain white, simply because of colour matching outfits! After second thoughts I decided this might look too clinical and went for the same pink and purple butterflies as you decribed.
DD wears them for only part of the day,and we tend to put her in trousers, mainly little jeans, and we chose a plain white pair of trainers to go over them.With the little bootcut trousers out now, you don't hardly see the AFOs at all.

TBH it does all seems rather irrelevant now,her walking has improved SO much in the short time she has been wearing them.

Sorry but is your dd only having to wear the AFOs at night and the insert into her daytime shoes. Can the insert be moved from one pair of shoes/boot to another or do they need to be "fitted" or is the size difference the problem?

MandM - even though dd is in Yr6 now, some of the children in her class still don't know she wears the raise as they do such a good job. The only problem we have is that is can take up to a month to get them done and when they're little they can have outgrown the shoe in that time

Dd has been offered surgery to stop her long leg growing at an appropriate time in order for the short leg to catch up. Eeek!

Good luck with the padlock lol!

Potty1 - When would dds surgery be? Hope the building goes smoothly by the way, saw it on the other thread about your disruptions - it's horrible living with it all but definitely worth it in the end.
Dingle - Yes, the AFOS are just for bedtime - good choice with the butterflies BTW!!! The raises are the permanent kind on the outside of the shoe so they're not transferrable.
Before anyone calls the 'Bad Mother Police' I was only joking about the shoes and outfits, but to be honest it has made me think quite a bit about the whole issue of balancing dds needs with maintaining an air of 'normality'. That probably sounds a bit harsh and heartless but I think up until fairly recently that is what I have tried to do (definitely more through denial and the difficulty of 'accepting' dds problems rather than embarrasment or anything as horrible as that)but as she is getting older it is finally sinking in that doing the best for dd is far more important than what anyine else thinks about her. OK you can call the Bad Mother Police now - they already know my name and address, I ring them to report myself on a regular basis

bumping for Blu

because I saw Blu posting elsewhere and know she knows about this

Hi MandM - don't know how I missed this earlier!
Yes, DS has raised shoes and a night splint. His leg length discrepancy is now 5cm (congenital bone condition - i don't know anyhting about CP), and he has a riase on the sole of his shoe, and a special orthotic insole inside.

I think it sounds really good that your dd is getting orthotics support - both for stability and because if she has a discrepancy, this can cause serious back problems in the long term.

DS wears a splint at night, and used to wear one in the day, too. If she ever does need one in the day, it might be a 'DAFO' - dynamic ankle-foot-othotic' (you may well hear her splint called an AFO). They really do help stability, as well as helping the tendons and soft tissue to stretch into the correct angle.

WE have the same problems with choice of shoes - DS wears Piedro boots and until this month, the orthotics service refused to supply more than one pair. After other problems, I have moved DS to the central service at the hospital and we now have two pairs of shoes. But restriction of choice is an issue, and I don't think there's much of a way round it.

Orthotists usually use nice warm water to do the plaster casting - after all they have to work with their hands in it too - if you get any fuss in future, ask if it is warm water.

DS loves all the fuss and rigmarole with plaster and cutting it etc!

Ask if you can transfer the insoles into different shoes - maybe you could buy two pairs of the same model but in different colours? Or they might make you two pairs - I don't think insoles are expensive for them to make. It's if they supply the specialist orthopeadic footwear (in split sizes!!) that they really start to mutter 'budget' and breathe in through hissed lips!

Put 100% cotton socks on under the splint at night. More comfy, less sweaty.

Good luck - I hope your dd gets on well with it all.

We chose purple and they go with everything

M&M sorry - didn't see that you already posted about the raises being external. But our orthotist told us that raises cost them about £8 perpair - so they still might agree.

I know what you mean about 'normality' and choice. One of the few things that makes me dissolve out of my usual strong positive matter-of-fact approach to DS's leg and foot is children's shoe shops. And friends who forget and say 'oooh, have you seen that new children's shoe shop / the new kickers / whatever'. Once, due to a spectacular F*k up with the (old) orthotics service, DS had to wear one shoe form a High St range, and his orthotic shoe on the other foot. I was really upset.

But mostly I don't think about it - watching him enjoy the extra freedom his footwear gives him is worth anything.

Sorry to hijack, but I still find it really difficult getting long, cotton socks for dd!
Most of them seem to be more like school socks, but she is only just a size 7 and I can never find any small enough for her. The only ones I could find were mixed fibres from M & S, they have been OK so far, but she has only had to wear them since November, don't know what they will be like in the summer!

MandM - surgery would be about 18 months before she stops growing (which is around 14 for a girl).....they measure by skeletal age which can be different to chronological age. Dd's bones are currently 10 and she's 11! Apparently the bones can age more quickly during puberty so they are keeping a close eye at the moment.

Choice of shoe is an issue for us, more so now than as a toddler, school shoes and trainers are fine but raises on summer shoes and dress shoes cause us problems, and the difference in shoe size between feet. Also dd's 'little' leg is quite a bit thinner and she doesn't like skirts because of it.

And I've escaped the building work today thanks - spent the afternoon at my mums where its warm!

re Cotton socks - I think someone recommended Primark, when this came up recently.
I found some in Sainsbury's but now they've disappeared.

Thanks everyone for your advice. I've only just caught back up with this again so didn't want you to think I wasn't grateful. I only really get to MN when I'm in the office and I've been out visiting for a few days then to an important appointment this morning - my acrylic nail infills!!! . BTW, nothing to do with orthotics, but please think about me this weekend, I've just popped onto the market in town before coming into work (don't tell the boss!) and bought a large goose egg and bag of yellow feathers to make dds decorated egg entry for nursery on Monday. I can't even begin to think what my house is going to look like by Sunday evening - a SN 3 year old with the attention span of a flea, a large egg, glue, feathers and an 11 month old springer spaniel - the combination is potentially lethal!! I'm still covered in glitter and red hair gel from this morning's batle to create a Comic Relief hairstyle!!!
The cotton sock suggestion is really good thank you - and I'm always up for an excuse to go shopping in Primark in Manchester!
Thanks again everyone and I'll keep you posted on our progress