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Conflicting advice - AFO's or Prescription Orthotics with shoe modification

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Old 07-30-2010, 02:24 AM   #1
Join Date: Jul 2010
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kage761 HB User
Conflicting advice - AFO's or Prescription Orthotics with shoe modification

Hi everyone. Im new here and would be greatfull for any advise. We have a 3.5 year old boy with CP (calf spacticity) mostly on the left side of his legs but also on his right to a small degree. He has been through a set of AFO's but has been out of them for about 9 months becuase the tightness seemed to be under control. The physio recommended botox now as he has been through a growth spurt and the tightness is quite significant, but the orthopaedic surgeon didnt think it would be necessary Šnd between him and the physio we have agreed to go back into the AFO's instead. However, after a referral by another doctor we have seen a podiatrist - who is suggesting we dont do the AFO's and we get a set of the prescription orthotics with modified shoes to lift the heels by up to 4 cm. My problem is they both are 100% confident in their recommendaions and they both believe that the other is wrong. So what do we do ?. How do we decide ?. Not expecting anyone to answer for us, but perhaps some real people with real experiences might be able to tell us their stories and help us understand a bit better. Sorry for the long post. And thanks for reading.
Cheers, Karen

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Old 07-30-2010, 05:11 PM   #2
Join Date: Aug 2008
Location: Melbourne, Vic, Australia
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Leaciesmum HB User
Re: Conflicting advice - AFO's or Prescription Orthotics with shoe modification

Wow I don't envy your position with this, we rely on the "experts" to know what's needed for our kids, but when they're all conflicting it must be a nightmare.

This is how it works for us, our PT's and Paediatrician suggest things and give reports to our Orthopedic surgeon at the hospital. He then takes them on board and decides for himself if he believes it's in our girls best interest at the time. Ultimately the final decision is up to us but I believe in and trust completely our Orthopedic surgeon (he's the best in Australia and world renown).

Our daughter (she's just turned 4) has only had two lots of botox (and a phenol block) and I know the effects are short lived (6-10wks) and in that time she has some really intensive stretching to get the most out of it before it wears off. The first time we had marvelous results but the second time she had a huge growth spurt just after getting it. It was like her bones said, 'woohoo lets grow while the muscles are sleeping', lol. And so we didn't get the same results.

Leacie also has AFO's, not so much because of the tightness in the calves and hamstrings but because she has funky feet. When she stands (supported) she's virtually standing on the inside ankle and they bend out and around. The AFO's help correct this, BUT she can't crawl (bunny hop) in them (her only form of getting around on her own) so she only wears them when we're doing PT type activities or in the standing frame or when we go out.

I can't comment about the perscription orthotics and special shoes as I don't know much about them.

Sorry I can't be of much help, I wish you luck in your decision.

Old 07-30-2010, 06:16 PM   #3
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nwmom HB User
Re: Conflicting advice - AFO's or Prescription Orthotics with shoe modification

Let us know how it works if you try the heel lift. Our chiropractor thought that was what we should do for Noah!

Old 07-31-2010, 02:05 AM   #4
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Basswife HB UserBasswife HB User
Re: Conflicting advice - AFO's or Prescription Orthotics with shoe modification

DS is 2 and half and has spastic diaplegia, most tightness in the hips and calfs. Ok, so we have a mixture of what you've been recommended.

UFOs for Physio work with a heal lift of around 2cm. He wears for standing, a small amount of time in a walking frame and long sitting.

Piedros, specialist shoes, which are flat for using in his specialist seating, going out in his wheelchair and also for less intinsive time in his walker.

I don't know how its all paid for, we're in the UK and its provided on our NHS system. But I wouldn't know what to recommend if you have to choose. I would say either would be good as it gives neccessary stretching. You know your child best. The UFOs certainly stretch more, and they are made small enough that they fit into the shoes. Could you find out about having a mixture?

Ultimatly its physio who is working with him the most, so talk it over with them.

Old 08-01-2010, 12:28 AM   #5
Join Date: Jul 2010
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kage761 HB User
Re: Conflicting advice - AFO's or Prescription Orthotics with shoe modification

Thanks everyone for the advice. We are meeting seperately with the Podiatrist and then the Physio next week - we'll make a decision after that. The Chiro we see is supporting the Podiatrist and the Othropaedic surgeon is supporting the Physio. So its a split ... :-). Will let you know what we decide.
All the best to you all.

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