Re: Now I understand why some people give up...

August 31, 2005

Sue,

I'm sorry to hear that you and your son are having a hard time with the AFO.

Most of the children in this group have been treated using the Ponseti protocol

which does not call for the use of an AFO. Rather we use a pair of shoes

mounted on a bar that keep the affected foot/feet rotated outward to maintain

the correction acheived during casting (this is the Foot Abduction Brace/Denis

Browne Bar, FAB/DBB).

If your doctor is telling you that she or he is using the Ponseti protocol while

prescribing an AFO, this is a clear sign that your doctor is NOT following the

protocol. AFOs have been shown to be utterly useless when it comes to

maintaining correction with this method (not so with other methods of

treatment). An AFO cannot hold the foot in the external rotation (abduction)

that is key in preventing relapse.

Here is a link to a terrific booklet about the Ponseti method:

I do know that if your son's foot is not staying in the AFO--and especially if

the AFO is causing sores--it is likely that the foot is either not yet fully

corrected or has lost some correction. Others in this group who have dealt wih

AFOs can haopefully tell you more about their experiences. How old is your son?

Has he had any kind of corrective surgery? Have you considered getting another

opinion from a doctor who is experienced with the Ponseti protocol?

Lots of questions.... Hope you find some answers and some help.

Naomi

The Family

Naomi Hannah(02/21/01) Jonah(06/20/03, corrected bilateral clubfoot, FAB

14/7)

britsvt wrote:

ds just went into his AFO on Monday and he is miserable. He already

has a reddish/purple mark on the back of one heel. It seems no matter

how much we push his foot into the small plastic boot, it won't stay.

Five minutes later we check and you can tell his heel has slipped up.

I feel like I'm placing him in a torture device.

PLEASE HELP!!

Sue

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