Re: [clubfoot] HELP!

[Guest guest]

Sorry, I posted the info about the s in the other thread (New info

on ). But now that I read your responses on the shoes and them not

taking them back, I think you should demand that he be re-casted till his

feet are large enough. Take him in and don't walk out until he's in a cast

to maintain full correction. AFO's are not the answer...

Or, insist that he should have been fitted for a narrow shoe in the first

place and make a big stink in the brace shop. Well, that's what I'd do lol

:~} I seriously doubt I'd walk out of there without some kind of

compensation. Sounds like they're working you anyway, indentations in the

bottoms... what a crock! Like anyone else will see that after they're

mounted on another bar, jeez... No matter what they end up saying, don't

let them make those AFO's. You may want to refer back to a thread, I think

it'll be found in September maybe... called " AFO's Suck! " in the NoSurgery

archives. Maybe will pop in here and tell you how useless they

were too. You can always sell the shoes to someone who needs them. I've

actually seen them for sale on ebay.

Dr. Ponseti is quoted as saying " AFO's are worthless in maintaining

correction " . I'm sure someone will pull up the studies and the actual

quote from Dr. P. I keep loosing it each time someone kindly sends it to

me. duh! They switched to AFO's when Dr. Ponseti was retired from the

Univ. of Iowa and that's when they found that they had a much higher

relapse rate than they did with the FAB. I once heard someone say it was

around 70% but don't quote me on that. The relapse rate with the DBB is

roughly 5% (or less). Big difference.

Here is my reply from that other thread about the shoes:

>We got the 0000s for him and those are still too big.

>The doc said that as long as we keep doing his

>stretches we shouldn't lose too much ground but he

>will see when we go back in.

The narrows? They're not the standard shoes, you have to specify the N

width. Most CF are on the wide side so that's why the M's are what most

people get. Look in the back of the boot, it should say 1644 M or 1644 N.

Is the strap in the lower slot? Also, you can slit the tongue keeper up

towards the top of the tongue (don't cut the stitches) so that you can pull

the tongue way down over the toes so the top sits at or under the top of

the boot. This keeps the ankle nice and tight and really helps keep the

feet in. Try only lacing the boots to the second from the top hole, this

also increases how tight you can get the ankle.

There is also the question of correction, which often is the cause of feet

not staying in the shoes. The foot is nicely over corrected (70 degrees)

and has at least 5 degrees of dorsiflexion? Stiff at all, pointing in or

down at all?

If in fact after you do everything you can and he just won't stay, you have

a much better options than stretching exercises till he grows. That really

could cause you and him some significant tolerance issues when he does go

into the FAB. Really, a foot that is not 100% corrected will not tolerate

the FAB well, if at all. Your first option is to re-cast till his feet are

big enough. That is the simplest option. There is no reason he should be

unbraced (AFO's don't hold correction well enough to be considered a proper

brace in this method so even when he gets the AFO's, he is still

essentially unbraced) or uncasted for any length of time so a few more

weeks of casts will save you countless hours of heartache when you do get

him big enough for the brace. The second option is to get the

Ponseti/ FAB which is made specifically for your child's foot, and

after he's bigger, try the Markell shoes again. There are many options

that you can explore instead of leaving your little man's feet unbraced,

because the repercussions of doing so will very likely be a much bigger

problem than any of your other options. These feet can relapse in a matter

of hours, no matter how much stretching and AFO wearing you do. And

vigorous stretching may even be detrimental to his foot (rockerbottom) so

be gentle when you're doing his stretches. Please keep in mind that

whatever you decide, before using any type FAB the foot must be fully over

corrected (last cast at 70 degrees abduction, 10-15 degrees dorsiflexion),

and that he should wear his brace as soon as he gets the last cast

off. Meaning, that unless some miracle occurs and his foot doesn't relapse

at all, he will need further casting to be able to wear the FAB.

Here's the link to get the other FAB. Iowa is apparently using these near

exclusively as the first FAB now for all infants. Parents love this brace,

it is much more CF friendly at first when these little feet don't have

heels formed yet. nice and soft suede very similar in look to a

Birkenstock sandal. Your insurance should cover it with the proper coding

(ask ) but even without, unless you're willing to keep him in

casts, the cost of this brace isn't so bad for the good it will do (could

last up to a year actually) and may be your best option for his specially

small feet.

Ponseti Brace Website

To view or order brace, and to contact

http://mdorthopaedics.org/http://mdorthopaedics.org/

If you haven't yet, check out the Ponseti website

http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html

This FAB tips & tricks document has pictures which may be useful for you

when using the Markell shoes and bar. I can't upload it to this groups

files section (too full), but you can find it in the files section of the

NoSurgery group titled FAB (MS Word document) at

http://health.groups.yahoo.com/group/nosurgery4clubfoot/files/

You will have to subscribe to that list to be able to access it, if you

need it in another format let me know, I've also got an .rtf I can send you.

HTH - hang in there. You're doing a great job, we all know how

overwhelming this is. Keep posting and asking questions, do your research

and everything will work out in the end. :~}

Kori

At 01:01 PM 3/21/2005, you wrote:

>Sorry to sound dumb but I am new to all this...when

>you say s, is that the shoes? I have been

>told the AFO is to keep his foot aligned until his

>feet can fit the shoes correctly as his feet are too

>small to stay in the shoes in the dbb. I have a call

>into our doctor for his take on all this but have

>received no call back yet. Getting very frustrated...

>

>--- frogabog frogabog@...> wrote:

> >

> > Cancel the order for the AFO's, they're a very

> > expensive mistake. Call

> > , get the code he uses for insurance

> > and have your insurance

> > pre-approve it or let you know what you'll pay for

> > them. In comparison,

> > AFO's are about $2K, and your portion is $231. The

> > s are $380,

> > your portion should be significantly less.

> >

> >

> > I just posted 's website info. LMK if you need

> > it again.

> >

> >

> > Kori

> >

> >

> > At 10:37 AM 3/21/2005, you wrote:

> >

> > >I just got a call from the place making the AFOs

> > for

> > >...after insurance our portion is $231! We

> > >don't have that!! Do you guys know of any place

> > were

> > >we parents can get assistance when we can't cover

> > all

> > >this stuff?

> > >

> > >Any info would be appreciated...

> > >

> > >

> > > " Without music, life would be a

> > mistake. " --Nietzsche

> > > " Heaven's not beyond the clouds, it's just beyond

> > the fear.

> > >No heaven's not beyond the clouds, it's for us to

> > find right here. " --Garth

> > >, " Belleau Wood "

> > >

> > >__________________________________________________

> > >