DAFOs

[sneezecakesmum]

Any experience of these. DGS fights his rigid AFOs and gets distressed wearing them. He has no spasticity as such but over pronates badly when he stands and walks and his feet will end up deformed permanently. He pushes agint th AFOs constantly. He has piedro stability boots but manages to toe walk in them so the instep is also going over. We know he should wear the AFOs but he just can't walk in them as his ankle flexibility goes.

Are you referring to a hinged, knee height AFO? If so, we have quite a bit of experience. Bee started wearing rigid AFOs on her first birthday (at the time, it was to limit spasticity) but switched to hinged when she was about 18 months old, when she got her first walking frame.

Yes I know a bit about them. Are you under a paediatric Podiatrist or orthotist? Have you discussed the issue with them? You don't say how old he is, if he's a little older perhaps its worth discussing a shorter ankle foot orthotic or even an insole sized functional foot orthoses. It doesn't sound as though he ought to continue like this.

Thanks our Brainwave physio suggested looking at the short DAFOs, not hinged but just to correct the pronation.

DGS is under the community paed but not specifically an orthotist as his regular physio organises piedros and AFOs. He is 4. 1/2 and doesn't stand or walk much during the day and what little he does would be made miserable by the AFOs. His last pair were not even worn so a complete waste. It's a devil and deep blue sea situation. He needs to be supported otherwise his walking will cause foot deformities but if he wears the AFOs he won't walk as they are just so uncomfortable. He is dyskinetic so his tone fluctuates constantly between high and low.

His piedros give brilliant ankle support but we know the high tone he uses when walking is seriously pulling his mid foot inwards . We will have to have a word with his physio and admit the AFOs are not being used. She's lovely so hope she can see a way forward. I was looking at orthotic insoles but they would need to be custom made as his foot is so narrow or maybe these DAFOs.

I would suggest liaising with a paediatric orthotist or Podiatrist on the NHS. Pods are really the experts on Pronation.
A rethink is seriously required. Unfortunately it often happens, I've done it myself. We may prescribe exactly the right thing but if it doesn't work in real life it's useless. Hopefully she'll see another way forward and perhaps try the short DAFO.

As an example, in the last year, Bee has gone through Cascade DAFO Pollywogs, Bunny braces, and now has her custom molded AFOs. It was a lot of money out of our pockets, but we didn't want overkill, so started with the minimal support. Turned out that she needed the full support after all.

What works on paper or in theory is useless if the patient can't comply with it - sometimes the best solution is a midpoint instead. I hope you can find something that works... seems a lot of us are dealing with bracing and mobility things right now - wonder if it the time of year?

Bee you are so right this is what we are seeing. What's the point of expensive custom AFOs if they are unwearable. DGS is a child and reacts like one to what is uncomfortable even though they are well made and fitted.

AE we will try to talk to the physio on Monday and ask for a referral to an orthotist, which I hope they have somewhere. It seems its just AFOs or piedros but DGS needs something in between to at least try out. Maybe when he's older he can cooperate more. We've cancelled 2 casting appointments as we don't want to waste time and it is so stressful for DGS. Many thanks, we have a plan

dd3 wears insoles in her piedros, she's had a couple of different sorts so it's definitely worth asking the orthotist about them when you can get a referral.

We've had dafos... and rigid afos..hinged afos, heel cups in piedros.....

The dafos we had were made of thinner and more flexible plastic(or whatever it is) than rigid afos. They were good for the pronation but were a bugger to get on as they sort of wrap around the foot and have to be prised open. DS2 had these for a year or so and then we changed to hinged afos as the dafos weren't quite supportive enough. However his feet have still managed to become progressively more deformed (he has low tone, no spasticity) and now at 16 (today!) he's back in rigid afos....

keep going back and ask to try all options until something is more comfy. It's always a balance between best support and actual wearability.

ds2 had the DAFO's for a number of years, they took along while for him to get used to them so it was little & often for the first few months.
In the end he actually used to askf or them as he felt more stable & less wobbly.
DS2 is a bit odd in that he ahs very floppy flexible joints but spasticity in the calf muscles.
They helped him maintain a good position & range of movement.

Thanks. I hope the trust will look at DAFOs even if it is just for a trial period, after all the AFOs weren't worn at all so basically wasted. He has weak ankles too which the piedros help with so fingers x that there is such a thing as paed orthotist in our trust

DD has jumpstart kangaroo dafos (I think that's what they are called) and they give support to her wobbly ankles while allowing her the freedom of movement to walk, run and jump. She does still manage to toewalk in them, but is able to walk heel-toe beautifully if she concentrates.

Thanks galena. I will look into them. We are looking at the various types before speaking to our physio as I think she will need to refer us to orthotist.

My advice would be to keep going back. Is you have the AFOs but aren't wearing them, they aren't right. We have months when I feel like we are at the orthotist every 2 weeks but sometimes it takes a while to sort out. Like you at there is no point in having the AFOs if they aren't being worn.
Dd has had every type of orthotic under the sun and no single one is right for every purpose. For example she walked great in AFOs but couldn't crawl in them so she wore nothing to nursery and AFOs to and from and all afternoon.
I find there are good and bad orthotists, I would ask for a long appointment (usually you either get 20 or 40mins) with them and your Physio. Take your brainwave recommends and make them discuss all options. Make sure they are def looking at him not his diagnosis as often it's just AFOs or piedros that are offered in the first instance.
Personally I would steer clear of NHS hinged DAFOs due to the materials they use they are very big and heavy.
If they only offer you knee high AFOs you could always cut them back yourself, we have done this in the past as DD couldn't sit or cycle comfortably as the nipped but the Physio insisted they had to be knee length.
I have an orthotic obsession so let me know how you get on xx

have you seen the new range of piedros? They have some lovely new designs, I saw them at Kidz South last week! I'm really hoping after 6 years in the exact same boot our new orthotist will order some for dd3