AFOs

[RMmom]

My daughter is new to AFOs...she just recently finished serial casting.

I am not sure how much walking she will be able to tolerate for our trip in 6 months.

She is able to walk without assistance.

Just don't know with the heat and the distance, if she will exhaust herself.

What do you do with your child and AFOs?

Do you rent a wheelchair, have them walk, get a GAC card?
Any help would be appreciated.

Thanks!

 

[ThreeBeans]

No chair necessary. DAFOs and AFOs have never so much as slowed my daughter down. She's played soccer, football and basketball with them. (Took 'em off for swimming though )


Protip: Keen Newport H2s about 2 sizes up from her regular foot size will fit her DAFOs perfectly.

Same deal with Crocs.


Just have her do some practice walking and break those puppies in before you hit the parks.

 

[ThreeBeans]

Oh, and if you're looking for a regular non-park sneaker, Nike's Lunarglides 1.5-2 sizes up are great. Pop the insole out and the brace fits right in.

 

[Lisab372]

My daughter has worn AFO's since she was about 3 and is now 13. We rent a wheelchair for Disney, because she has cerebral palsy. Though she walks independently she fatigues very easily. I have found that the heat is a strong factor in the amount of fatigue as well.

She walks when she wants to browse the stores, when meeting the characters and when we are seated in the restaurants etc. Using the chair for the majority of the walking helps extend our time at the parks as well as use the time more efficiently as she takes much longer to walk to places than we can.

We have never asked for a GAC as most everything is wheelchair accessible. I recommend renting a chair offsite. They will deliver and pickup the at your hotel and it is really helpful to have the chair at the end of the day. We found that the walk from the park to the bus, waiting in line and the walk to the hotel room was much farther than anticipated.

 

[Jen_in_NH]

My 3 year old has been wearing an AFO for about 5 months after serial casting for a clubfoot. He is walking better every day, but his stamina still isn't back at normal. That might be because he has some other ortho issues as well. We're going to WDW, and I'm planning on bringing a stroller, and getting a GAC for stroller as a wheelchair.

As far as shoes, we've had great luck with New Balance wide width, in about a half size bigger than he needs normally. We've had no luck withCrocs, but he rotates his whole foot out and tries to balance on his heel, so Crocs won't support him at all that way.

 

[gilesmt]

When my dd wore afo, we used her stroller until age 5, then we got the doctor to say we could rent a w/c, which would make it so we would not have to pay. When we went looking we found one for free, and the insurance was happy to update the chair for our dd, and we just had to adjust it for several years when going to Disney, which must have cost a lot less since insurance was always happy to adjust it. She stopped needing it at age 13 and has never needed another one.

Make sure you bring lots of socks, my DD's feet would sweat and we had to change them frequently. New ones are best, cotton is best and all white, knee socks are best but they where hard to find even back then. Sears use to sell some.

Shoes we had to have a coppler help make ours, since we where one sided cp, actually both sides but one was spastic and one was ataxic only one side needed afo and arm brace. We got out shoes from stride right and the coppler would stretch them and pull out the insides, had to buy two different sizes. The health dept always paid for them.

Make sure you have her remove her afo and socks and check for blisters every two hours.they tend to get very hot and if a blister starts you want to know right away. Time for her feet in hot tub at night helps reduce swelling. And we always allowed her not to put her night cast on while we were on vacation.

 

[KPeveler]

It depends entirely on the reason behind the AFOs and what other issues your daughter may have. I just got my own AFO/KAFOs after casting, but since my medical problems encompass more than just my legs, I still use a wheelchair.

Most people walk at least 6-8 miles in WDW, often closer to 10-12 miles, depending on the park. If she has not been walking much recently, she may not have the stamina to walk that much yet. Also, at least with me, my AFOs make me walk differently (that is, properly, but my muscles are not used to walking like that yet), so they actually will hurt for a little while as my muscles strengthen. Essentially my legs are going to the gym for a bit til my muscles learn how to walk properly.

Also, how does she do with stairs with them? This may also be a reason to talk about a GAC (to avoid stairs) or a wheelchair.

Try going for a walk for a mile with the new AFOs. If she can do that 8 times a day for several days in a row, then you are fine. If she has difficulty, then you may want to consider a wheelchair.

 

[peemagg]

I have HKAfo's, and know for myself it takes more energy to walk with them. I use a chair or scooter at Disney or any place where walking distances are needed. Maybe hers only being AFO's it won't be so bad with stamina.

 

[Mama Who]

How old is she? Is this a decision she can help you make? Is she young enough that a "stroller as wheelchair" tag would help if she gets tired?

 

[cantwaittoseemickey]

Our son is 13 and has warn afo's since he was 3. He walks independently but fatigue and heat do a number on him. He has other health issues as well as is dx'd with CP but to see him he does not "appear" to be affected. He has always used a stroller and now a wheelchair for long distance walking. His legs could never handle the amount of walking we do at WDW. He rides to each attraction and while we wait in line as standing for long periods is also tough for him. But he walks on the rides. I would also consider taking a small bottle of baby powder as it helps soak up the sweat in the afo's. We sprinkle our sons around the top and inside at least once a week to cut down on sweating and odor. As for shoes he mostly wears sandals with socks and his afo's in the summer.