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Hi,

This might seem out of left field.. but ..

I think you are in Michigan, correct? Would you consider going to

Iowa, to see the doctors there? Or the one in Michigan on the Ponseti

list, if he's not the one you are seeing?

The fact that you mention a two week break between casts and getting

the brace raised a red flag.

If your son had a break of that long, or even a day or two, before

getting the brace he has now, it's no wonder the shoes are not

staying on. There's no way they could. The feet start relapsing right

away if they're left free. Especially at that young of an age. The

brace should be set up for your baby, ready and waiting for the

MINUTE that last cast comes off.

Sometimes parents end up blaming the brace or the Markell shoes when

that's not the problem, but because the feet aren't fully corrected

in the first place, or have relapsed.

Many doctors are new to the method, or are not following it

precisely, and/or are working with orthotists who are unfamiliar with

it. Parents have to be wary. Here are two checklists of questions and

tips for parents, which might be helpful:

http://members.tripod.com/ponseti_links-ivil/id13.html

http://www.clubfoot.co.za/checklist.htm

All this is intended only in the spirit of helping .. Maybe I'm

misunderstanding your situation. I certainly don't intend to offend!

I do hope you can get things straightened out soon.

Hang in there,

> HI guys,

> Am having a nightmare getting my son's Markell shoes to fit.

> After two weeks (out of casts) and one week trying to get the

> Markell's to fit, after 5 consecutive trips to the

orthotist....I've

> given up. These shoes are just not going to work at this point in

> time. My son's club foot was corrected via Ponseti method and with

> a tenotamy. He is 10 weeks old, well, almost 11 weeks old. He is

> already having a relapse because no one can keep the shoes on him,

> not even the orthotist, or the specialist.....so my question to all

> of you is......Have ya'll seen the files section where someone

glued

> tennis shoes to the DBB? THAT is awesome. Shucks, I'm willing to

> give anything a try at this point. I've posted to you guys about

> the shoes, and have gotten a great response from parents

> who have put their children in them...I'm really considering

those.

> I'm concerned though in the 2 week lapse of not being in a cast

> (when my son comes out of them again) and waiting for the shoes to

> arrive that he'll have yet another relapse. Also, does ins. pay

for

> shoes if the Markell's do not work? I just don't even

want

> to mess ANYMORE with the Markells. THinking of having a bonfire

> tonight with them.

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So sorry to hear that you are having such a hard time with the Markells. They

most certainly can be a bear to get the hang of, and if you don't get the hang

of them quickly, it opens up a whole new set of troubles...

I'm not sure I understand your situation correctly. Are you saying that your

son was out of casts for 2 weeks before going into the FAB/DBB??? If so, it is

no wonder that you are having problems. These little feet relapse very, very

quickly, especially at first and especially in the youngest children. The

Markells will absolutely not work on feet that are not fully corrected. In

fact, they will be uncomfortable, they will come off, no one will be happy.

Another thing that is a huge red flag here is that you say your son is

relapsing, but that you are still putting the shoes on him. Why is he not in a

casts to deal with the relapse? Where are you located and who is treating your

son? The Markells and the FAB do not do any of the work of correcting the foot,

they are more like a retainer (as when you have braces, once the teeth are

straight, you wear a retainer) and essential in preventing a relapse. You must

have the foot corrected before you try the FAB again.

I think a few people have used various other shoes mounted on the bar, mainly

before Markell started making the tiniest sizes. My son, now nearly 2, has been

asking to wear his Teva sandals to bed instead of the Markells--certainly look

more comfortable to me.

I'll send you a copy of the tips 'n' tricks in another email.

Naomi

The Family

Naomi Hannah(02/21/01) Jonah(06/20/03, bilateral clubfoot, FAB 14/7)

jlkittredge jlkittredge@...> wrote:

HI guys,

Am having a nightmare getting my son's Markell shoes to fit.

After two weeks (out of casts) and one week trying to get the

Markell's to fit, after 5 consecutive trips to the orthotist....I've

given up. These shoes are just not going to work at this point in

time. My son's club foot was corrected via Ponseti method and with

a tenotamy. He is 10 weeks old, well, almost 11 weeks old. He is

already having a relapse because no one can keep the shoes on him,

not even the orthotist, or the specialist.....so my question to all

of you is......Have ya'll seen the files section where someone glued

tennis shoes to the DBB? THAT is awesome. Shucks, I'm willing to

give anything a try at this point. I've posted to you guys about

the shoes, and have gotten a great response from parents

who have put their children in them...I'm really considering those.

I'm concerned though in the 2 week lapse of not being in a cast

(when my son comes out of them again) and waiting for the shoes to

arrive that he'll have yet another relapse. Also, does ins. pay for

shoes if the Markell's do not work? I just don't even want

to mess ANYMORE with the Markells. THinking of having a bonfire

tonight with them.

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Naomi powellbugs@...> wrote:

So sorry to hear that you are having such a hard time with the Markells. They

most certainly can be a bear to get the hang of, and if you don't get the hang

of them quickly, it opens up a whole new set of troubles...

I've tried EVERYTHING that there possibly was/is to do. They just will not fit

him. Its like trying to put a square peg in a round hole, it just ain't gonna

fit.

I'm not sure I understand your situation correctly. Are you saying that your

son was out of casts for 2 weeks before going into the FAB/DBB???

Nope, currently my son has been out of casts and DBB for 2weeks now. The lapse

between getting out of his final cast and receiving the DBB was 5 days. He

received his DBB on Wednesday. All day Wednesday I tried to get them on him,

they would just slide off, no matter how much I tried. I tried all day Thursday

as well. I called Thursday before they closed and they got me in on Friday.

They made some adjustments thinking that they had solved the problem. They got

the shoes and bars on him, all proud that they got them on, yet by the time I

got him and got him out of his car seat, his club foot was out (and he slept all

the way home, didn't fuss and barely moved), so imagine my surprise when he was

out of them. Went back on Monday, Tuesday, and Wednesday for more of the same

(useless adjustments). Finally, having had enough I went back to the Doctor who

used the Ponseti procedure. My son is going back into casts this coming Friday.

If so, it is no wonder that you are having problems. These little feet relapse

very, very quickly, especially at first and especially in the youngest children.

The Markells will absolutely not work on feet that are not fully corrected. In

fact, they will be uncomfortable, they will come off, no one will be happy.

That is EXACTLY what is happeneing.

Another thing that is a huge red flag here is that you say your son is

relapsing, but that you are still putting the shoes on him. Why is he not in a

casts to deal with the relapse?

That is going to happen this coming Friday.

Where are you located and who is treating your son?

I am located in Grand Rapid, MI. Dr. Hotchkiss, MD is treating my son.

He is located at Michigan Ave.

The Markells and the FAB do not do any of the work of correcting the foot,

they are more like a retainer (as when you have braces, once the teeth are

straight, you wear a retainer) and essential in preventing a relapse. You must

have the foot corrected before you try the FAB again.

I think a few people have used various other shoes mounted on the bar, mainly

before Markell started making the tiniest sizes. My son, now nearly 2, has been

asking to wear his Teva sandals to bed instead of the Markells--certainly look

more comfortable to me.

I've never heard of the Teva sandals before, what are those?

I'll send you a copy of the tips 'n' tricks in another email.

Thanks. I need some advice. If my son is going back into casts this coming

Friday, and I do NOT want to use the Markell shoes again (I'm afraid of more

useless trips to the orthotist) and would like to order the sandals,

however they take 2 weeks to get...so NOW I'm afraid my son will relapse again

when he gets out of his casts while waiting for the s to arrive. Should

I order the impression kit before he's out of his cast? Not too sure how to go

about all of this. Just want what is best for my little boy.

Jen

-Jen K.

---------------------------------

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There is absolutely no reason for your son to be out of casts waiting for

the FAB. More than one child here has had " holding " casts while waiting for

a brace. Just because the foot it corrected doesnt mean it should be free

if there is no brace for it to go into immediately.

Also, you mention that the Markell's just don't fit ... how do you mean?? I

mean, is his foot shaped different than a " normal " foot? A corrected

clubfoot should look JUST LIKE a normal foot. If it doesn't then it is

either not corrected or possibly there is something else going on (like

atypical).

Angel

Caitlen 8/29/97

Arica 8/22/01

Kai 12/31/02

----Original Message Follows----

Reply-To: nosurgery4clubfoot

To: nosurgery4clubfoot

Subject: Re: Tennis shoes on the DBB

Date: Sun, 15 May 2005 18:20:07 -0700 (PDT)

Naomi powellbugs@...> wrote:

So sorry to hear that you are having such a hard time with the Markells.

They most certainly can be a bear to get the hang of, and if you don't get

the hang of them quickly, it opens up a whole new set of troubles...

I've tried EVERYTHING that there possibly was/is to do. They just will not

fit him. Its like trying to put a square peg in a round hole, it just ain't

gonna fit.

I'm not sure I understand your situation correctly. Are you saying that

your son was out of casts for 2 weeks before going into the FAB/DBB???

Nope, currently my son has been out of casts and DBB for 2weeks now. The

lapse between getting out of his final cast and receiving the DBB was 5

days. He received his DBB on Wednesday. All day Wednesday I tried to get

them on him, they would just slide off, no matter how much I tried. I tried

all day Thursday as well. I called Thursday before they closed and they got

me in on Friday. They made some adjustments thinking that they had solved

the problem. They got the shoes and bars on him, all proud that they got

them on, yet by the time I got him and got him out of his car seat, his club

foot was out (and he slept all the way home, didn't fuss and barely moved),

so imagine my surprise when he was out of them. Went back on Monday,

Tuesday, and Wednesday for more of the same (useless adjustments). Finally,

having had enough I went back to the Doctor who used the Ponseti procedure.

My son is going back into casts this coming Friday.

If so, it is no wonder that you are having problems. These little feet

relapse very, very quickly, especially at first and especially in the

youngest children. The Markells will absolutely not work on feet that are

not fully corrected. In fact, they will be uncomfortable, they will come

off, no one will be happy.

That is EXACTLY what is happeneing.

Another thing that is a huge red flag here is that you say your son is

relapsing, but that you are still putting the shoes on him. Why is he not

in a casts to deal with the relapse?

That is going to happen this coming Friday.

Where are you located and who is treating your son?

I am located in Grand Rapid, MI. Dr. Hotchkiss, MD is treating my

son. He is located at Michigan Ave.

The Markells and the FAB do not do any of the work of correcting the

foot, they are more like a retainer (as when you have braces, once the teeth

are straight, you wear a retainer) and essential in preventing a relapse.

You must have the foot corrected before you try the FAB again.

I think a few people have used various other shoes mounted on the bar,

mainly before Markell started making the tiniest sizes. My son, now nearly

2, has been asking to wear his Teva sandals to bed instead of the

Markells--certainly look more comfortable to me.

I've never heard of the Teva sandals before, what are those?

I'll send you a copy of the tips 'n' tricks in another email.

Thanks. I need some advice. If my son is going back into casts this coming

Friday, and I do NOT want to use the Markell shoes again (I'm afraid of more

useless trips to the orthotist) and would like to order the

sandals, however they take 2 weeks to get...so NOW I'm afraid my son will

relapse again when he gets out of his casts while waiting for the s

to arrive. Should I order the impression kit before he's out of his cast?

Not too sure how to go about all of this. Just want what is best for my

little boy.

Jen

-Jen K.

---------------------------------

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,

After reading all you've written here, it really sounds like the main

reason the shoes won't fit him is because he was left without any kind of

correction for so long. The shoes need to be applied IMMEDIATELY after the

last cast, within an hour or two. Not a day, not 2 days, certainly not 5

and absolutely not 8. They didn't get your son into his shoes and his foot

relapsed. A relapsed foot will not stay in the shoes and the Dr. should

never have allowed it in the first place. Additionally, the Dr. should be

smart enough to see that's the reason he's having the problems. To ignore

this, is beyond ludicracy... it's bordering on malpractice if you ask

me. If we parents know this, the docs should too.

I don't want to say for 100% sure that it's not the shoes, because perhaps

you will find that you son's foot is a little special and may indeed need

the P/M shoes. However baring the signs we know that indicate Atypical, he

has as good a chance as any CF child of successfully wearing the Markell's

with competent hands correcting his feet. Which is sounds like he may not

have right now. Or perhaps the hands are competent, but the administration

and communication isn't. There is simply no excuse for not having those

shoes available for him as soon as his casts come off. And should they not

be available for some reason, he should have been placed in a holding cast

till they arrived. Hands down, there's no other way it should have been

done. They were wrong, and thus compromised your son's feet in their

complacency. Not your fault at all, not the child's fault, and not his

feet's fault. It's is the caregiver's fault.

I know this sounds harsh and difficult to believe being that you're there

seeing all this first hand and wanting to hurl the shoes off a

bridge... But I want you to understand that you have been handed a loosing

situation and your son was not given the best of care. There was little or

no way you could have changed it. But you can now. Do not let those feet

be without casts till whatever shoes you prefer arrive. Naomi has sent you

the tips document, there is information in there which will help you to be

able to apply the shoes properly and tools to aid you in knowing if they're

staying on properly if you do choose to try them again on nicely corrected

feet. I would encourage you to consider them once more because they are a

good choice for *most* (and most being at least 95%) clubfeet corrected

with this method. Knowing how to apply them properly is one of the main

factors in making them work properly. And many, many parents, including

myself have come to realize we were not doing it right at all and actually

caused the problems ourselves - this does not sound like you but it could

have been even if everything was done 100% right by the docs. You were

given no tools to make this work and quite honestly, with the way they

handled it even if you had those tools you would likely still be in the

same place you are at now. You are not the first, and won't be the last

parent who has had this happen but you're in the right place now to get it

handled properly and effectively. We are here to help in any way we

can. Hang in there!

After all my time here, and actually asking the very same question you did

about the tennis shoes... I have come to the conclusion that tennis shoes

will not hold the feet as well as the Markells. The strap on these shoes

is an integral part of their design, and often is the main factor for

keeping the heel down. Any shoe could be worn, but will it securely and

effectively hold the heel 100% seated in the bottom of the shoe? Very

likely no. Regular shoes are simply not designed with that in

mind. Without maintaining that heel deep down in the shoe you cannot

complete the healing of the tendon that was cut so that the heel could

actually do this. It will not stretch properly (the brace is

dorsiflexed - the bar is bent so the toes point up) and will heal tight

again. Which will mean another surgery for babe. Which can be done, but

do you really want to start all over again at that point 6 months down the

road?

As for the Ponseti/'s, well 2w may be what it says, but we know

that in mad crazy with orders right now and 2w lead time is pretty

optimistic right now. So you have a choice, get babe right into the

Markell's with nicely corrected feet immediately after full corrective

casting, or keep him in casts till his P/M's arrive. You will likely be

pleased with the P/M's if you choose them, but they aren't really

intentioned for all clubfeet for the entire duration of the treatment and

bracing period. Many parents are using them at first because the ARE

easier to use, but will switch back to the Markell's once the foot grows

and the heel forms better. Larger sizes, past about size 5 aren't even

available yet. They are primarily meant for infant feet and Atypical

clubfeet, at least at this time. Infant feet are a bit wonky shaped in

general which is the root of much of the problem with little feet and the

Markells, but nicely corrected clubfeet grow to become very stable like a

normal foot within the first year or so. And application of the Markell's

is relatively simple with such a foot. I just wanted to let you know that

part of the equation to help with your decision making process about what

shoes to get.

I would have to say that whatever way you want to go with shoes (as long as

it's a FAB) will be the right decision for you. And we are lucky to have

the option now for the P/M's, even if insurance coverage is limited at best

right now. Do your research, consider how you can make sure his feet are

properly and fully corrected to be prepared for bracing, and apply them

properly. You can't go wrong when you're following your heart and are here

for support. If you need help with making the Markell's work, we're

here. If you need support with a baby in casts waiting for the

P/M's... we're here. If you need help finding a doc for a second opinion,

this is the place to find a good one. If you are going to be the one to

show the current doc a thing or two with your amazing child... well you

couldn't be in a better place!

Please let us know how you decide, and if there's anything else we can do

to help. Remember, you are not alone in this journey... so many of us

have been in your position and lived to tell the story afterwards. With

happy footed babies and children running and jumping and carrying on like

there's not a thing in the world wrong with their feet. The light at the

end of the tunnel is very bright indeed!

hugs!

Kori

Darbi

Rt. CF 3/28-00

FAB 12-14hr/d

At 06:20 PM 5/15/2005, you wrote:

>Naomi powellbugs@...> wrote:

>So sorry to hear that you are having such a hard time with the

>Markells. They most certainly can be a bear to get the hang of, and if

>you don't get the hang of them quickly, it opens up a whole new set of

>troubles...

>

>I've tried EVERYTHING that there possibly was/is to do. They just will

>not fit him. Its like trying to put a square peg in a round hole, it just

>ain't gonna fit.

>

>

>I'm not sure I understand your situation correctly. Are you saying that

>your son was out of casts for 2 weeks before going into the FAB/DBB???

>

>Nope, currently my son has been out of casts and DBB for 2weeks now. The

>lapse between getting out of his final cast and receiving the DBB was 5

>days. He received his DBB on Wednesday. All day Wednesday I tried to get

>them on him, they would just slide off, no matter how much I tried. I

>tried all day Thursday as well. I called Thursday before they closed and

>they got me in on Friday. They made some adjustments thinking that they

>had solved the problem. They got the shoes and bars on him, all proud

>that they got them on, yet by the time I got him and got him out of his

>car seat, his club foot was out (and he slept all the way home, didn't

>fuss and barely moved), so imagine my surprise when he was out of

>them. Went back on Monday, Tuesday, and Wednesday for more of the same

>(useless adjustments). Finally, having had enough I went back to the

>Doctor who used the Ponseti procedure. My son is going back into casts

>this coming Friday.

>

> If so, it is no wonder that you are having problems. These little feet

> relapse very, very quickly, especially at first and especially in the

> youngest children. The Markells will absolutely not work on feet that

> are not fully corrected. In fact, they will be uncomfortable, they will

> come off, no one will be happy.

>

>That is EXACTLY what is happeneing.

>

>

>

>

>

>Another thing that is a huge red flag here is that you say your son is

>relapsing, but that you are still putting the shoes on him. Why is he not

>in a casts to deal with the relapse?

>

>That is going to happen this coming Friday.

>

>

>

> Where are you located and who is treating your son?

>

>I am located in Grand Rapid, MI. Dr. Hotchkiss, MD is treating my

>son. He is located at Michigan Ave.

>

> The Markells and the FAB do not do any of the work of correcting the

> foot, they are more like a retainer (as when you have braces, once the

> teeth are straight, you wear a retainer) and essential in preventing a

> relapse. You must have the foot corrected before you try the FAB again.

>

>I think a few people have used various other shoes mounted on the bar,

>mainly before Markell started making the tiniest sizes. My son, now

>nearly 2, has been asking to wear his Teva sandals to bed instead of the

>Markells--certainly look more comfortable to me.

>

>I've never heard of the Teva sandals before, what are those?

>

>

>

>I'll send you a copy of the tips 'n' tricks in another email.

>

>Thanks. I need some advice. If my son is going back into casts this

>coming Friday, and I do NOT want to use the Markell shoes again (I'm

>afraid of more useless trips to the orthotist) and would like to order the

> sandals, however they take 2 weeks to get...so NOW I'm afraid my

>son will relapse again when he gets out of his casts while waiting for the

>s to arrive. Should I order the impression kit before he's out of

>his cast? Not too sure how to go about all of this. Just want what is

>best for my little boy.

>

>

>

>

>

>Jen

>

>

>

>-Jen K.

>

>

>---------------------------------

>Yahoo! Mail Mobile

> Take Yahoo! Mail with you! Check email on your mobile phone.

>

>

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,

I couldn't agree more with all that Kori is saying here. We went

through the same things with my son and the Markell shoes, he kept the

shoes on but got terrible sores from them. I was lucky enough to have

the option of a plastic boot type shoe (similar to an AFO designed by

our Dr., Dobbs in St. Louis) attached to the FAB which we used

for about 8 weeks. By that time my son's foot had grown a little and

was a little more solid; I tried the Markell shoes again and haven't

looked back since. We use them now (it's been about 4 months) without

ANY problems. About the tennis shoes on the bar, as Kori was saying,

I think that most kids would be able to slip their foot right out of a

tennis shoe due to the lack of the strap holding the foot down. Also,

our Dr. said that the other problem with tennis shoes is finding a

sturdy way to attach the bar to a soft bottomed shoe.

Anyway, just wanted to reiterate what has already been said, that we

are here to support you whatever you decide to do, just keep asking

for advice, use us for a sounding board or whatever. Just don't give

up! Hugs!

Jenna (4/7/01) & Sammy (9/25/04, Dobbs Brace, 16-18/7)

> >So sorry to hear that you are having such a hard time with the

> >Markells. They most certainly can be a bear to get the hang of,

and if

> >you don't get the hang of them quickly, it opens up a whole new set of

> >troubles...

> >

> >I've tried EVERYTHING that there possibly was/is to do. They just

will

> >not fit him. Its like trying to put a square peg in a round hole,

it just

> >ain't gonna fit.

> >

> >

> >I'm not sure I understand your situation correctly. Are you saying

that

> >your son was out of casts for 2 weeks before going into the FAB/DBB???

> >

> >Nope, currently my son has been out of casts and DBB for 2weeks

now. The

> >lapse between getting out of his final cast and receiving the DBB

was 5

> >days. He received his DBB on Wednesday. All day Wednesday I tried

to get

> >them on him, they would just slide off, no matter how much I tried. I

> >tried all day Thursday as well. I called Thursday before they

closed and

> >they got me in on Friday. They made some adjustments thinking that

they

> >had solved the problem. They got the shoes and bars on him, all proud

> >that they got them on, yet by the time I got him and got him out of

his

> >car seat, his club foot was out (and he slept all the way home, didn't

> >fuss and barely moved), so imagine my surprise when he was out of

> >them. Went back on Monday, Tuesday, and Wednesday for more of the

same

> >(useless adjustments). Finally, having had enough I went back to the

> >Doctor who used the Ponseti procedure. My son is going back into

casts

> >this coming Friday.

> >

> > If so, it is no wonder that you are having problems. These

little feet

> > relapse very, very quickly, especially at first and especially in the

> > youngest children. The Markells will absolutely not work on feet

that

> > are not fully corrected. In fact, they will be uncomfortable,

they will

> > come off, no one will be happy.

> >

> >That is EXACTLY what is happeneing.

> >

> >

> >

> >

> >

> >Another thing that is a huge red flag here is that you say your son is

> >relapsing, but that you are still putting the shoes on him. Why is

he not

> >in a casts to deal with the relapse?

> >

> >That is going to happen this coming Friday.

> >

> >

> >

> > Where are you located and who is treating your son?

> >

> >I am located in Grand Rapid, MI. Dr. Hotchkiss, MD is

treating my

> >son. He is located at Michigan Ave.

> >

> > The Markells and the FAB do not do any of the work of correcting

the

> > foot, they are more like a retainer (as when you have braces, once

the

> > teeth are straight, you wear a retainer) and essential in

preventing a

> > relapse. You must have the foot corrected before you try the FAB

again.

> >

> >I think a few people have used various other shoes mounted on the bar,

> >mainly before Markell started making the tiniest sizes. My son, now

> >nearly 2, has been asking to wear his Teva sandals to bed instead

of the

> >Markells--certainly look more comfortable to me.

> >

> >I've never heard of the Teva sandals before, what are those?

> >

> >

> >

> >I'll send you a copy of the tips 'n' tricks in another email.

> >

> >Thanks. I need some advice. If my son is going back into casts this

> >coming Friday, and I do NOT want to use the Markell shoes again (I'm

> >afraid of more useless trips to the orthotist) and would like to

order the

> > sandals, however they take 2 weeks to get...so NOW I'm

afraid my

> >son will relapse again when he gets out of his casts while waiting

for the

> >s to arrive. Should I order the impression kit before he's

out of

> >his cast? Not too sure how to go about all of this. Just want

what is

> >best for my little boy.

> >

> >

> >

> >

> >

> >Jen

> >

> >

> >

> >-Jen K.

> >

> >

> >---------------------------------

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Angel Gray m_kitaki@...> wrote:

There is absolutely no reason for your son to be out of casts waiting for

the FAB.

That is what I thought too!

More than one child here has had " holding " casts while waiting for

a brace. Just because the foot it corrected doesnt mean it should be free

if there is no brace for it to go into immediately.

Also, you mention that the Markell's just don't fit ... how do you mean?? I

mean, is his foot shaped different than a " normal " foot?

It certainly is shaped different than a normal foot. It is turning in.

A corrected

clubfoot should look JUST LIKE a normal foot. If it doesn't then it is

either not corrected or possibly there is something else going on (like

atypical).

What does atypical mean? I've heard that word used alot in the group.

. :)

Angel

Caitlen 8/29/97

Arica 8/22/01

Kai 12/31/02

----Original Message Follows----

Reply-To: nosurgery4clubfoot

To: nosurgery4clubfoot

Subject: Re: Tennis shoes on the DBB

Date: Sun, 15 May 2005 18:20:07 -0700 (PDT)

Naomi powellbugs@...> wrote:

So sorry to hear that you are having such a hard time with the Markells.

They most certainly can be a bear to get the hang of, and if you don't get

the hang of them quickly, it opens up a whole new set of troubles...

I've tried EVERYTHING that there possibly was/is to do. They just will not

fit him. Its like trying to put a square peg in a round hole, it just ain't

gonna fit.

I'm not sure I understand your situation correctly. Are you saying that

your son was out of casts for 2 weeks before going into the FAB/DBB???

Nope, currently my son has been out of casts and DBB for 2weeks now. The

lapse between getting out of his final cast and receiving the DBB was 5

days. He received his DBB on Wednesday. All day Wednesday I tried to get

them on him, they would just slide off, no matter how much I tried. I tried

all day Thursday as well. I called Thursday before they closed and they got

me in on Friday. They made some adjustments thinking that they had solved

the problem. They got the shoes and bars on him, all proud that they got

them on, yet by the time I got him and got him out of his car seat, his club

foot was out (and he slept all the way home, didn't fuss and barely moved),

so imagine my surprise when he was out of them. Went back on Monday,

Tuesday, and Wednesday for more of the same (useless adjustments). Finally,

having had enough I went back to the Doctor who used the Ponseti procedure.

My son is going back into casts this coming Friday.

If so, it is no wonder that you are having problems. These little feet

relapse very, very quickly, especially at first and especially in the

youngest children. The Markells will absolutely not work on feet that are

not fully corrected. In fact, they will be uncomfortable, they will come

off, no one will be happy.

That is EXACTLY what is happeneing.

Another thing that is a huge red flag here is that you say your son is

relapsing, but that you are still putting the shoes on him. Why is he not

in a casts to deal with the relapse?

That is going to happen this coming Friday.

Where are you located and who is treating your son?

I am located in Grand Rapid, MI. Dr. Hotchkiss, MD is treating my

son. He is located at Michigan Ave.

The Markells and the FAB do not do any of the work of correcting the

foot, they are more like a retainer (as when you have braces, once the teeth

are straight, you wear a retainer) and essential in preventing a relapse.

You must have the foot corrected before you try the FAB again.

I think a few people have used various other shoes mounted on the bar,

mainly before Markell started making the tiniest sizes. My son, now nearly

2, has been asking to wear his Teva sandals to bed instead of the

Markells--certainly look more comfortable to me.

I've never heard of the Teva sandals before, what are those?

I'll send you a copy of the tips 'n' tricks in another email.

Thanks. I need some advice. If my son is going back into casts this coming

Friday, and I do NOT want to use the Markell shoes again (I'm afraid of more

useless trips to the orthotist) and would like to order the

sandals, however they take 2 weeks to get...so NOW I'm afraid my son will

relapse again when he gets out of his casts while waiting for the s

to arrive. Should I order the impression kit before he's out of his cast?

Not too sure how to go about all of this. Just want what is best for my

little boy.

Jen

-Jen K.

---------------------------------

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An atypical clubfoot is just that - it is different from a " normal "

clubfoot. It reacts differently to casting because it is actually different

on the inside. Here is a link for my website with pics and description. it

is not complete and some of the information is out of date, but it gives you

a good idea of what atypical clubfoot is!

http://adifferentfoot.freeservers.com

Angel

Caitlen 8/29/97

Arica 8/22/01

Kai 12/31/02

----Original Message Follows----

Reply-To: nosurgery4clubfoot

To: nosurgery4clubfoot

Subject: Re: Tennis shoes on the DBB

Date: Mon, 16 May 2005 09:04:00 -0700 (PDT)

Angel Gray m_kitaki@...> wrote:

There is absolutely no reason for your son to be out of casts waiting for

the FAB.

That is what I thought too!

More than one child here has had " holding " casts while waiting for

a brace. Just because the foot it corrected doesnt mean it should be free

if there is no brace for it to go into immediately.

Also, you mention that the Markell's just don't fit ... how do you mean?? I

mean, is his foot shaped different than a " normal " foot?

It certainly is shaped different than a normal foot. It is turning in.

A corrected

clubfoot should look JUST LIKE a normal foot. If it doesn't then it is

either not corrected or possibly there is something else going on (like

atypical).

What does atypical mean? I've heard that word used alot in the group.

. :)

Angel

Caitlen 8/29/97

Arica 8/22/01

Kai 12/31/02

----Original Message Follows----

Reply-To: nosurgery4clubfoot

To: nosurgery4clubfoot

Subject: Re: Tennis shoes on the DBB

Date: Sun, 15 May 2005 18:20:07 -0700 (PDT)

Naomi powellbugs@...> wrote:

So sorry to hear that you are having such a hard time with the Markells.

They most certainly can be a bear to get the hang of, and if you don't get

the hang of them quickly, it opens up a whole new set of troubles...

I've tried EVERYTHING that there possibly was/is to do. They just will not

fit him. Its like trying to put a square peg in a round hole, it just ain't

gonna fit.

I'm not sure I understand your situation correctly. Are you saying that

your son was out of casts for 2 weeks before going into the FAB/DBB???

Nope, currently my son has been out of casts and DBB for 2weeks now. The

lapse between getting out of his final cast and receiving the DBB was 5

days. He received his DBB on Wednesday. All day Wednesday I tried to get

them on him, they would just slide off, no matter how much I tried. I tried

all day Thursday as well. I called Thursday before they closed and they got

me in on Friday. They made some adjustments thinking that they had solved

the problem. They got the shoes and bars on him, all proud that they got

them on, yet by the time I got him and got him out of his car seat, his club

foot was out (and he slept all the way home, didn't fuss and barely moved),

so imagine my surprise when he was out of them. Went back on Monday,

Tuesday, and Wednesday for more of the same (useless adjustments). Finally,

having had enough I went back to the Doctor who used the Ponseti procedure.

My son is going back into casts this coming Friday.

If so, it is no wonder that you are having problems. These little feet

relapse very, very quickly, especially at first and especially in the

youngest children. The Markells will absolutely not work on feet that are

not fully corrected. In fact, they will be uncomfortable, they will come

off, no one will be happy.

That is EXACTLY what is happeneing.

Another thing that is a huge red flag here is that you say your son is

relapsing, but that you are still putting the shoes on him. Why is he not

in a casts to deal with the relapse?

That is going to happen this coming Friday.

Where are you located and who is treating your son?

I am located in Grand Rapid, MI. Dr. Hotchkiss, MD is treating my

son. He is located at Michigan Ave.

The Markells and the FAB do not do any of the work of correcting the

foot, they are more like a retainer (as when you have braces, once the teeth

are straight, you wear a retainer) and essential in preventing a relapse.

You must have the foot corrected before you try the FAB again.

I think a few people have used various other shoes mounted on the bar,

mainly before Markell started making the tiniest sizes. My son, now nearly

2, has been asking to wear his Teva sandals to bed instead of the

Markells--certainly look more comfortable to me.

I've never heard of the Teva sandals before, what are those?

I'll send you a copy of the tips 'n' tricks in another email.

Thanks. I need some advice. If my son is going back into casts this coming

Friday, and I do NOT want to use the Markell shoes again (I'm afraid of more

useless trips to the orthotist) and would like to order the

sandals, however they take 2 weeks to get...so NOW I'm afraid my son will

relapse again when he gets out of his casts while waiting for the s

to arrive. Should I order the impression kit before he's out of his cast?

Not too sure how to go about all of this. Just want what is best for my

little boy.

Jen

-Jen K.

---------------------------------

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Angel Gray m_kitaki@...> wrote:

An atypical clubfoot is just that - it is different from a " normal "

clubfoot. It reacts differently to casting because it is actually different

on the inside. Here is a link for my website with pics and description. it

is not complete and some of the information is out of date, but it gives you

a good idea of what atypical clubfoot is!

Thank you Angel.

http://adifferentfoot.freeservers.com

Angel

Caitlen 8/29/97

Arica 8/22/01

Kai 12/31/02

----Original Message Follows----

Reply-To: nosurgery4clubfoot

To: nosurgery4clubfoot

Subject: Re: Tennis shoes on the DBB

Date: Mon, 16 May 2005 09:04:00 -0700 (PDT)

Angel Gray m_kitaki@...> wrote:

There is absolutely no reason for your son to be out of casts waiting for

the FAB.

That is what I thought too!

More than one child here has had " holding " casts while waiting for

a brace. Just because the foot it corrected doesnt mean it should be free

if there is no brace for it to go into immediately.

Also, you mention that the Markell's just don't fit ... how do you mean?? I

mean, is his foot shaped different than a " normal " foot?

It certainly is shaped different than a normal foot. It is turning in.

A corrected

clubfoot should look JUST LIKE a normal foot. If it doesn't then it is

either not corrected or possibly there is something else going on (like

atypical).

What does atypical mean? I've heard that word used alot in the group.

. :)

Angel

Caitlen 8/29/97

Arica 8/22/01

Kai 12/31/02

----Original Message Follows----

Reply-To: nosurgery4clubfoot

To: nosurgery4clubfoot

Subject: Re: Tennis shoes on the DBB

Date: Sun, 15 May 2005 18:20:07 -0700 (PDT)

Naomi powellbugs@...> wrote:

So sorry to hear that you are having such a hard time with the Markells.

They most certainly can be a bear to get the hang of, and if you don't get

the hang of them quickly, it opens up a whole new set of troubles...

I've tried EVERYTHING that there possibly was/is to do. They just will not

fit him. Its like trying to put a square peg in a round hole, it just ain't

gonna fit.

I'm not sure I understand your situation correctly. Are you saying that

your son was out of casts for 2 weeks before going into the FAB/DBB???

Nope, currently my son has been out of casts and DBB for 2weeks now. The

lapse between getting out of his final cast and receiving the DBB was 5

days. He received his DBB on Wednesday. All day Wednesday I tried to get

them on him, they would just slide off, no matter how much I tried. I tried

all day Thursday as well. I called Thursday before they closed and they got

me in on Friday. They made some adjustments thinking that they had solved

the problem. They got the shoes and bars on him, all proud that they got

them on, yet by the time I got him and got him out of his car seat, his club

foot was out (and he slept all the way home, didn't fuss and barely moved),

so imagine my surprise when he was out of them. Went back on Monday,

Tuesday, and Wednesday for more of the same (useless adjustments). Finally,

having had enough I went back to the Doctor who used the Ponseti procedure.

My son is going back into casts this coming Friday.

If so, it is no wonder that you are having problems. These little feet

relapse very, very quickly, especially at first and especially in the

youngest children. The Markells will absolutely not work on feet that are

not fully corrected. In fact, they will be uncomfortable, they will come

off, no one will be happy.

That is EXACTLY what is happeneing.

Another thing that is a huge red flag here is that you say your son is

relapsing, but that you are still putting the shoes on him. Why is he not

in a casts to deal with the relapse?

That is going to happen this coming Friday.

Where are you located and who is treating your son?

I am located in Grand Rapid, MI. Dr. Hotchkiss, MD is treating my

son. He is located at Michigan Ave.

The Markells and the FAB do not do any of the work of correcting the

foot, they are more like a retainer (as when you have braces, once the teeth

are straight, you wear a retainer) and essential in preventing a relapse.

You must have the foot corrected before you try the FAB again.

I think a few people have used various other shoes mounted on the bar,

mainly before Markell started making the tiniest sizes. My son, now nearly

2, has been asking to wear his Teva sandals to bed instead of the

Markells--certainly look more comfortable to me.

I've never heard of the Teva sandals before, what are those?

I'll send you a copy of the tips 'n' tricks in another email.

Thanks. I need some advice. If my son is going back into casts this coming

Friday, and I do NOT want to use the Markell shoes again (I'm afraid of more

useless trips to the orthotist) and would like to order the

sandals, however they take 2 weeks to get...so NOW I'm afraid my son will

relapse again when he gets out of his casts while waiting for the s

to arrive. Should I order the impression kit before he's out of his cast?

Not too sure how to go about all of this. Just want what is best for my

little boy.

Jen

-Jen K.

---------------------------------

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jagrindon@...> wrote:

,

I couldn't agree more with all that Kori is saying here. We went

through the same things with my son and the Markell shoes, he kept the

shoes on but got terrible sores from them. I was lucky enough to have

the option of a plastic boot type shoe (similar to an AFO designed by

our Dr., Dobbs in St. Louis) attached to the FAB which we used

for about 8 weeks.

I might have to check those out when we get back to the DBB/FAB point again.

By that time my son's foot had grown a little and

was a little more solid; I tried the Markell shoes again and haven't

looked back since. We use them now (it's been about 4 months) without

ANY problems. About the tennis shoes on the bar, as Kori was saying,

I think that most kids would be able to slip their foot right out of a

tennis shoe due to the lack of the strap holding the foot down.

Yeah, I bet you're right. Its hard enough to keep their heels down in these

special little shoes.

Anyway, just wanted to reiterate what has already been said, that we

are here to support you whatever you decide to do, just keep asking

for advice, use us for a sounding board or whatever. Just don't give

up!

Thank you, so much appreciated.

Hugs!

Jenna (4/7/01) & Sammy (9/25/04, Dobbs Brace, 16-18/7)

> >So sorry to hear that you are having such a hard time with the

> >Markells. They most certainly can be a bear to get the hang of,

and if

> >you don't get the hang of them quickly, it opens up a whole new set of

> >troubles...

> >

> >I've tried EVERYTHING that there possibly was/is to do. They just

will

> >not fit him. Its like trying to put a square peg in a round hole,

it just

> >ain't gonna fit.

> >

> >

> >I'm not sure I understand your situation correctly. Are you saying

that

> >your son was out of casts for 2 weeks before going into the FAB/DBB???

> >

> >Nope, currently my son has been out of casts and DBB for 2weeks

now. The

> >lapse between getting out of his final cast and receiving the DBB

was 5

> >days. He received his DBB on Wednesday. All day Wednesday I tried

to get

> >them on him, they would just slide off, no matter how much I tried. I

> >tried all day Thursday as well. I called Thursday before they

closed and

> >they got me in on Friday. They made some adjustments thinking that

they

> >had solved the problem. They got the shoes and bars on him, all proud

> >that they got them on, yet by the time I got him and got him out of

his

> >car seat, his club foot was out (and he slept all the way home, didn't

> >fuss and barely moved), so imagine my surprise when he was out of

> >them. Went back on Monday, Tuesday, and Wednesday for more of the

same

> >(useless adjustments). Finally, having had enough I went back to the

> >Doctor who used the Ponseti procedure. My son is going back into

casts

> >this coming Friday.

> >

> > If so, it is no wonder that you are having problems. These

little feet

> > relapse very, very quickly, especially at first and especially in the

> > youngest children. The Markells will absolutely not work on feet

that

> > are not fully corrected. In fact, they will be uncomfortable,

they will

> > come off, no one will be happy.

> >

> >That is EXACTLY what is happeneing.

> >

> >

> >

> >

> >

> >Another thing that is a huge red flag here is that you say your son is

> >relapsing, but that you are still putting the shoes on him. Why is

he not

> >in a casts to deal with the relapse?

> >

> >That is going to happen this coming Friday.

> >

> >

> >

> > Where are you located and who is treating your son?

> >

> >I am located in Grand Rapid, MI. Dr. Hotchkiss, MD is

treating my

> >son. He is located at Michigan Ave.

> >

> > The Markells and the FAB do not do any of the work of correcting

the

> > foot, they are more like a retainer (as when you have braces, once

the

> > teeth are straight, you wear a retainer) and essential in

preventing a

> > relapse. You must have the foot corrected before you try the FAB

again.

> >

> >I think a few people have used various other shoes mounted on the bar,

> >mainly before Markell started making the tiniest sizes. My son, now

> >nearly 2, has been asking to wear his Teva sandals to bed instead

of the

> >Markells--certainly look more comfortable to me.

> >

> >I've never heard of the Teva sandals before, what are those?

> >

> >

> >

> >I'll send you a copy of the tips 'n' tricks in another email.

> >

> >Thanks. I need some advice. If my son is going back into casts this

> >coming Friday, and I do NOT want to use the Markell shoes again (I'm

> >afraid of more useless trips to the orthotist) and would like to

order the

> > sandals, however they take 2 weeks to get...so NOW I'm

afraid my

> >son will relapse again when he gets out of his casts while waiting

for the

> >s to arrive. Should I order the impression kit before he's

out of

> >his cast? Not too sure how to go about all of this. Just want

what is

> >best for my little boy.

> >

> >

> >

> >

> >

> >Jen

> >

> >

> >

> >-Jen K.

> >

> >

> >---------------------------------

> >Yahoo! Mail Mobile

> > Take Yahoo! Mail with you! Check email on your mobile phone.

> >

> >

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Guest guest

frogabog frogabog@...> wrote:

,

After reading all you've written here, it really sounds like the main

reason the shoes won't fit him is because he was left without any kind of

correction for so long

I totally agree.

The shoes need to be applied IMMEDIATELY after the

last cast, within an hour or two. Not a day, not 2 days, certainly not 5

and absolutely not 8.

Wish that I would have been told that by Nick's doctor, or the orthotist!!!

They didn't get your son into his shoes and his foot

relapsed. A relapsed foot will not stay in the shoes and the Dr. should

never have allowed it in the first place. Additionally, the Dr. should be

smart enough to see that's the reason he's having the problems.

Yeah, I think so too. I think that he initially did a good job with my son, but

when I came back to him with all of the troubles I was having with the shoes, he

should have been able to see why (that his foot was turning in and that it

wasn't the shoes). When he told me, " the foot was ok because he could still

" hold " it in correction that brought up a huge red flag to me. " The foot should

have been in correction on its own at this point.

To ignore

this, is beyond ludicracy... it's bordering on malpractice if you ask

me. If we parents know this, the docs should too.

I don't want to say for 100% sure that it's not the shoes, because perhaps

you will find that you son's foot is a little special and may indeed need

the P/M shoes. However baring the signs we know that indicate Atypical, he

has as good a chance as any CF child of successfully wearing the Markell's

with competent hands correcting his feet. Which is sounds like he may not

have right now. Or perhaps the hands are competent, but the administration

and communication isn't. There is simply no excuse for not having those

shoes available for him as soon as his casts come off.

No doubt. I wish that they would have had them ready for him. I didn't know

any different at this point and thought that this was standard procedure... no

one told me any different. The doctor should have, or the orthotist should

have...SOMEONE!!!

I know this sounds harsh and difficult to believe being that you're there

seeing all this first hand and wanting to hurl the shoes off a

bridge... But I want you to understand that you have been handed a loosing

situation and your son was not given the best of care. There was little or

no way you could have changed it. But you can now. Do not let those feet

be without casts till whatever shoes you prefer arrive.

I consulted with a Ponseti approved doctor this afternoon and within 15 minutes

he had my son in a new cast, agreeing that my son was relapsing and should have

been in shoes immediatly. He has an onsite orthotist and GET THIS, he is THREE

MILES from my home. I am so excited I can barely stand it.

Naomi has sent you

the tips document, there is information in there which will help you to be

able to apply the shoes properly and tools to aid you in knowing if they're

staying on properly if you do choose to try them again on nicely corrected

feet.

Yeah, I printed that puppy out and have it right here on my desk.

I would encourage you to consider them once more because they are a

good choice for *most* (and most being at least 95%) clubfeet corrected

with this method. Knowing how to apply them properly is one of the main

factors in making them work properly. And many, many parents, including

myself have come to realize we were not doing it right at all and actually

caused the problems ourselves - this does not sound like you but it could

have been even if everything was done 100% right by the docs.

At first I'm sure I wasn't putting them on properly, but after ready the

document and going through it step by step, I was certain I was putting them on

properly at that point, and those suckers would NOT stay on.

You were

given no tools to make this work and quite honestly, with the way they

handled it even if you had those tools you would likely still be in the

same place you are at now. You are not the first, and won't be the last

parent who has had this happen but you're in the right place now to get it

handled properly and effectively.

GOSH, I sure don't want this to happen to anyone else!! It sucks.

We are here to help in any way we

can. Hang in there!

Thank you so much for your support.

As for the Ponseti/'s, well 2w may be what it says, but we know

that in mad crazy with orders right now and 2w lead time is pretty

optimistic right now.

WOW!! All these babies being born with clubfeet??HOLY COW!

So you have a choice, get babe right into the

Markell's with nicely corrected feet immediately after full corrective

casting, or keep him in casts till his P/M's arrive.

I believe I'll give the Markells another shot with this new doctor, and if they

don't work then we'll trouble shoot it from there.

You will likely be

pleased with the P/M's if you choose them, but they aren't really

intentioned for all clubfeet for the entire duration of the treatment and

bracing period. Many parents are using them at first because the ARE

easier to use, but will switch back to the Markell's once the foot grows

and the heel forms better.

That makes sense.

Larger sizes, past about size 5 aren't even

available yet. They are primarily meant for infant feet and Atypical

clubfeet, at least at this time. Infant feet are a bit wonky shaped in

general which is the root of much of the problem with little feet and the

Markells, but nicely corrected clubfeet grow to become very stable like a

normal foot within the first year or so. And application of the Markell's

is relatively simple with such a foot. I just wanted to let you know that

part of the equation to help with your decision making process about what

shoes to get.

Thank you so much.

I would have to say that whatever way you want to go with shoes (as long as

it's a FAB) will be the right decision for you. And we are lucky to have

the option now for the P/M's, even if insurance coverage is limited at best

right now.

Insurance sucks, those money thirsty freaks! At this point, I don't care what

the cost is, I just want what is best for my little baby.

Do your research, consider how you can make sure his feet are

properly and fully corrected to be prepared for bracing, and apply them

properly. You can't go wrong when you're following your heart and are here

for support. If you need help with making the Markell's work, we're

here. If you need support with a baby in casts waiting for the

P/M's... we're here. If you need help finding a doc for a second opinion,

this is the place to find a good one. If you are going to be the one to

show the current doc a thing or two with your amazing child... well you

couldn't be in a better place!

Please let us know how you decide,

I decided to get a second opinion, and I'm glad that I did. I feel alot more

confident and secure now. Thank you for your care and concern for my child.

The fact that you would take the time to educate me ( a complete stranger) with

all this information you posess is very nice. Thank you.

and if there's anything else we can do

to help. Remember, you are not alone in this journey... so many of us

have been in your position and lived to tell the story afterwards. With

happy footed babies and children running and jumping and carrying on like

there's not a thing in the world wrong with their feet.

Can't wait for that!!

Nick 3-1-05 club foot on left

3-29-01 perfect feet!

-Jen K.

---------------------------------

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That is great news !!

Shook

Retail Operations Manager/Baking Instructor

Vie de France Yamazaki, Inc.

2070 Chain Bridge Rd. Suite 500

Vienna, VA 22182

x374

x374

fax

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