afos

[Phoenix4725]

orthotics have decided that ds need something more than piedro boots and have mentioned afos due to the fact he walks right over on his ankle bones and its throwing his knees and hips out do remember someoen else metioning about private place that did silicone ones and wondering if these might be more comfortable

Also they mentioned they might opt for ahinged option so ankle moves up and down any one had experaince of these

I would go with your orthotist and not go looking for alternatives... just MO but if they feel he needs afos then he needs decent support..not silicone!

My son has low muscle tone and hypermobility and has had AFOs since he was 4. He currently has two pairs.. a low cut pair..just over ankle..complete wrap round called DAFOs.. thinner material (whatever it is they are made of!) and you have to prise them apart to get his feet in... good for the rolling not so supportive higher up.I begged for them for when he's in shorts because I hate the looks of the AFOs!

He also has a pair of full hinged AFOs...these are his usual wear. The hinges mean that he can bend his foot UP..as you do when walking up stairs etc..but not point his toes down. Very supportive. Only downside is his navicular bones have managed to collapse anyway and he has significantly deformed feet now..but he's 12 and his tone is rubbish so it's bean a gradual thing!

The afos have been good for my son, but there are downsides.. callouses, blisters (with new ones) and of course the look of them! Ok in winter under trousers..horrible in summer!

Good luck with them

I have spoken to someone who has tried the silicone afos for her child, DS has had hard plastic day and night since he was 2 and Iooked into them when he went through a period of hating his own.

They do provide very good support, and are tailored in exactly where each person needs support so can be excellent, they also tend not to give callsoses and blisters as they are soft.

I would advise you not to go for them at this time, mostly becasue of the expense, they are very very expensive and will need replacing about every year as his feet grow (if not more often). Secondly if you give the NHS ones a go you will see if there is any benefit first and you can look into them later.

My DS has never had a callouse or a blister or any pressure point with his, we have a very good orthotist who takes good casts.

Sorry, have screaming child in my ear, I hope this makes some sense...

thank you both for replying for ds its not becaus ehis foot drops has good up and down movement but its the ankle rolling .Did not realise that the nhs did hinged ones .

Macforme its due to ds low tone and hypermoblity that ds needs them to as piedro boots not helping

Think biggest problem is the waiting between appoinments to get things moving seems at least 4 months if were lucky

Silicone ones are expensive, quite difficult to get on NHS but NOT impossible. I suspect you would need a very good reason to not have the normal ones before the NHS would fund. They come from a company called Dorset Orthopaedic and if appropriate, are very effective. We supply them and most of our patients self fund.

Trouble is with the littlies, they insist on growing and have a rapid turnover of AFOs. I work in this area, and it is not unknown for a child to be cast and assessed, only to have grown out of them by the time they are supplied 4 weeks later!

The normal ones are very good though, hope your DS does well in them.

hmm ds had his feet measure for piedro boots last november we got them March and were actually going back end of month certainly betwee november and March he not grown hes tiny little thing only 96cm at 4 yo

will know for definate but tahts what hes talked about on the phone mind could mean a 3 or month wait at least for appoinment to get castings and probably another 3 months to get .

think might investigate cost of self funding do you know if need referal from orthotics nhs or can i phone book appoinment

You can phone them and they will have an orthotist in your area who is associated with them but may not necessarily work for them (IYKWIM?) Sadly, it may be the orthotist you will wait so many months to see on the NHS.

You may already have the info they need, letters from doc's re: DSs condition (tho you have explained his problem quite clearly so it may not be needed). This orthotist will be able to form his/her own professional opinion as to what is required. The referrals we get are generally from the patients consultant, usually brief patient history, condition and what they hope to achieve in prescribing. As I said, you probably know all this info.

Give them a call, they are very helpful and it does sound as if you may get a decent amount of wear out of them. Prices vary from patient to patient, but a (very) rough average price is about £300-ish each. Most of our patients are adults though, not sure how much that affects the price.

Please attend the NHS appointment when it eventually comes though.

problem we have is that ds no longer has a paed as he no longer preschool so now switched to school dr who is worse than bag of tripe .

I have letters from paed stating he has muscle tone and hypertonia etc

But would be more than happy to pay to see privae orthotist not rich by any means but just fed up waiting and dont want to leave it much longer feeling ds gets much olderbe harder to get him to wear them .

Will give them acall today and see what can sort as got letter today moving his appointment even further backwards now not till November and this for urgent appointment ,then that means hes had boots for 12 months

,

Thank you , have got a appointment for 7th August with a orthotist from the dorset clinic in one of their outreach clinics in London and the price for intial assement is lot more resonable than I thought it would be even the cost of afos are doable if they are needed .

For me its worth the money just for second opion as our nhs one tends to have you in door and out within 10 mins ,though will keep the nhs appointment so am on their books as such

Phoenix - could you post back here to say how it all goes? I am still interested in these maybe for a later date. Thanks

Hi, we've had an assessment with Dorset Orthopaedic when dd first starting walking and was in Dafos up to her ankle. At the time (back in May) they seemed to be suitable and we went off to try and seek funding from charities (they cost £1000 a pair). Well last week we heard that we hadn't got the funding and so decided we'd somehow find the money and booked an appointment for casting of the SAFOs. However, she's had a couple of months just in Piedros as her dafos stopped her walking totally and unfortunately her right leg has suffered to the point where a safo could no longer do the job and the orthotist suggested going back to a full knee length afo so I'm currently waiting for an appointment with the NHS orthotist and meanwhile dd still struggling on in crappy old piedros . Dorset ortho are a fab company, very honest and actually refunded the £500 deposit I'd paid this week whereas they could have happily taken the money from me. I would recommend booking a consultation and finding out more. You do have to think of the cost though, we were told that they might only last 4-5 months and we really can't afford £1000 every few months but if they were suitable we would have had to find a way as it is bloody heart-breaking watching dd hobble around in second hand piedros or crappy nhs dafos that hurt .

glad to hear from your experiance how good they have been,Yes they warned me they could be between 300-500 each

but am so fed up of waiting for nhs and ds is suffering so know how you feel HBOB.Im going to need to beg borrow to findto

HBOB Bloody Hell! DAFOs (when they are new) are uncomfy and can cause a bit of distress initially, but they shouldn't hurt her. Can't believe that they haven't called her straight back in to clinic. It's a shit service you are getting, have they even looked at her in them to see what the problem is? There is no excuse for making a child wait for months. It is very difficult to get a casting appointment, but having a look/checking the fit in a child who is in pain can be done in 10 mins at the next clinic and should be squeezed in as an extra.

if HBOB clinic anything like mine , you cant even get a 10 min appointment there is one person to cover paeds and adults and thats for very large area in north east Essex hence having to look at going private

Hi Phoenix
DS2 has DAFO's on the NHS (Ipswich) after his piedro's weren't giving enough support.

He has never had blisters, the onlymarks he gets is around his leg if his socks roll down, but certainly no soreness.
They are well cushioned inside around the ankle bone.
I agree with feelingbetter HBOB, a child should never be in pain from their splints.

His need replacing & the next appoint (made last week) is for beginning of Sept, having saif that they are very good at ringing if they have a cancellation so he amy well be seen sooner.

D1 has new ones cast on Thursday - the old compnay are no longer contracted to our local hospital, so the hospital used 2 blokes inhouse who do all the splints for ALL ages. The last ones were crap. Hence new ones being made (what a waste of NHS money). dd's physio came in (on her day off - bless) to sit in on the apt and ensure the blokes got it right this time. So fingers crossed. She still had marks on her ankles where the last ones gave her blisters and made her feet hurt so much.

we have had a nightmare with splints (two lots thrown straight in the bin) and then the third dh phoned me(10 mins after leaving hospital apt) to say that dc really couldn't walk in them and was refusing to take another step(they were found to be incorrect too)
we are now travelling for over 2 hours each way to try and get better fitted splints after our local hospital suggested that dc needed botox or an operation-our second opinion hospital laughed at this suggestion and suggested(in the first instance)better fitting and supporting splints......
we wait and see
(but the petrol bill will be horrendous...beans on toast for us!!)

anonandlikeit wish we could been refered to ispwich .Colchester seems have lot sof problems mostly due to funding .If ds needs anyother referals will be going for choose and book i ispwich

Yes Phoenix, they are good although the orthotists may be froma private company, (they seem to have branded uniforms) but the service has been very good.
DS2'S splints have been great for him although he was a bit rough with them & so broke a couple of pairs so his most recent ones have been made with a more pliable material.
He currently has red & white football ones which the kids in his class think are cool.

Welw got a phonecall to say oh we can see you tomorow if can make it for the nhs orthotics ,
kid you not we was in the room for 5 mis max including taking shoes of and puttng them on , and he said yes he needs splints SAFOs need to come in for casting then handed appointmentfor DEcember to get them cast and was ushering us out door even before had chance to ask questions

Am still going to see th dorset clinic orthotic man just 5 mins did not exactly inspire much confidence

sory another question re SAFos are they hinged or would he be able to flex his ankle like going up and downstairs ?