Rod and - Avery Lynn

[Guest guest]

Rod and ,

The shoes ARE an option, and a damn fine one at that. I can only wish my 1st

son had been given that option but he wasn't and now he has crappy feet. Other

parents here didn't know they had an option either, and their kids have crappy

feet too. The shoes ARE an option (did I say that already?)

First of all, at 9 months of age, your child has an excellent chance at gaining

a full non-surgical correction via the Ponseti method (i.e. casting and FAB

use). You have nothing to lose by trying. But if you opt for surgery, there is

no going back and you do lose the option of trying a non=surgical approach.

I wonder who your dr. is and where you are located. If we knew perhaps we could

point you towards a Ponseti Doctor for a 2nd opinion and perhaps a new course of

treatment. It probably woudn't take more than five or so castings to get her

ship shape and in to the FAB again (hey guys notice I quit using the term DBB

after reading the article about Dennis Brown!)

And that is where the tough love comes in. It's likely, actually, that after a

series of castings which acheive proper correction, she would go well in the FAB

again. Your doctor was very wrong to reduce her hours from 23 to 12. It's a

gradual stepping down process, from 23 to 18, to 16, to 14 to 12 over the course

of many months maybe past the first year before you reach the 12 hour mark.

Your dr. is not following Ponseti protocol.

My guess is that she began to relapse in those first days of drastic and non

protocol hour-reduction thus causing the FAB to hurt her feet. A non-corrected,

or a relapsed foot, will hurt in the FAB.

If your dr. is already talking a surgical correction option, I'd run. There is

no excuse for surgery on a 9 month old baby that I'm aware of.

As for your other kids - well, they need to just deal with it, and so do you.

Consider rearranging the sleeping system so if she screams she's not so noisy to

them. Consider the temporary and selective use of Benadryl to help them all

sleep. Consider moving grandma in for a few weeks to give you a hand if you're

too tired. Find options. Look for solutions. If the FAB is fitting

correctly, she will quickly adjust to its wear. By taking if off due to

crying (assuming there is no pain), you will train her to cry until they come

off rather than train her to wear it and thus the cycle you are currently in

will continue.

A few nights or a week, even two weeks of hell in the house is better than

surgery. It's a temporary condition to adjust to the FAB. Her throwing a fit

(again, assuming there is no pain and it's only a fit because she hates it) is

not going to do any permanent harm to her or your other kids. It's just going

to be a bump in the road that as a FAMILY you all have to deal with for the

health of this one infant. In later years your whole family is going to bend

and deal with hassell when one or all are on various ball teams, etc., or one

has the flu or one wants summer camp...whatever....and you have to shuffle them

all around and one of them is going to suffer a little inconvienience and pout,

kwim? As a family you do your best to support the needs of each other - and

well, this baby has a need so everyone buck up and deal with the fact she needs

to wear this thing.

I know twins with a toddler is a hard row to hoe but again I stress this is a

temporary window in time..... a temporary window to fix them non-surgically, and

a temporary window of wearing the FAB. It's very small in the scheme of things.

Surgery holds no guarentee but it does come with lots of risk, aside from

typical surgical risk such as infection there is the risk it won't fix her feet.

And then where will you be? Back on the operating table trying to get them

fixed again...someone trying to fix someone else's screw up.

This isn't a muffler job on the Honda that went wrong, it's your kid's feet,

the feet she'll have to stand on the rest of your life. Wold from this

group is a case in point. Her 19 mo old son went the surgical route prior to

the Ponseti route and he's all kinds of messed up....can't walk, special shoes

(a modified FAB and other wise) physical therapy several times a week.....and

yes, she's been to Dr. Ponseti personally many times and he can't help because

the surgical damage has been done. Does that really sound like a good option

to you? A safe risk to agree to? Is dragging your kid to physical therapy,

etc., every week sound like a nicer idea to deal with your crippled baby than a

little FAB wear? You think your other two kids are inconvienced now, imagine

when you gotta drag them to the therapy clinic or drop them off at sitters a

couple times a week and all the money that'll cost to pay for the physical

therapy, etc....... Think about it.

Don't sell your baby out in the name of convienience is the bottom line.

Lack of sleep is just tough darts, deal with it, this phase WILL pass. Tell us

where you are located, find a 2nd opinin from a real Ponseti Doctor instead of

what appears to be your cheap imitation, then get her re-casted, fixed and on

her way to a normal healthy active life on regular feet.

I do apologize I re-read this and it sounds pretty gruff but the fact is, you

have the chance to do it right and it sounds like you're looking for reasons to

justify a short cut (surgery) and I can't sympathise there. She's a baby, she

can't make this decision for herself but supposeing she could, do you really

think she'd want her feet cut open and rearranged? I have four clubbed feet

running through my house and drive (like many others) 12 hours one way for each

and every appointment to get it done right. We packed our family up last time

and moved to the Mc house in Iowa for three weeks when my 2nd son

was born so he could get the proper treatment. Lots of other folks on this

board go even further; many from outside the USA come here. Some single mom

here said she drove all the way cross country alone with her kids to get to

Iowa. You may not have to drive so far, but any drive is worth it.

Where there is a will there is a way and if she won't wear the FAB there is a

reason behind it (not fitting/feet not corrected right). Get her fixed so it

fits and she'll wear it, and if she doesn't like it well she's a baby what does

she know, in ten years she'll thank you for being the meanest mommy she has.

You wouldn't let her play with fire if she threw a fit for it, would you?

ee, mother of two bcf (bilateral club feet) boys:

- NON Ponseti Method Club Foot Disaster

Everett - Dr. Ponseti Success Story

>She did great wearing

them

> > full time for 3 months. Then the Dr said she could do just night

> > time for 12 hours from then on. Avery decided she liked her

freedom

> > and after 3 night of wearing them she wouldn't cooperate at

ALL!!!

> > She would scream an " ear piercing " scream that would wake up the

> > rest of the family. (If she was the only child MAYBE I could of

> kept

> > her in them). The minute we took them off she stopped so we

tried a

> > few different things to help her but nothing seemed to help. The

Dr

> > changed the degree of the shoes but said she couldn't do

anymore.

> > The foot has started turning in and has pretty much gone back to

> > where it started... she hasn't had the shoes on in months now.

She

> > is 9 months old and we don't feel like we have many options at

this

> > time. The Dr told us the options were to go through castings

again

> > and start over with the shoes or more than likely surgery (which

> she

> > really talked down on... she doesn't want to see that happen but

> the

> > shoes aren't an option...)Avery is very difficult to get to

> > cooperate even now. She is a very light sleeper. She has been

> > through sooo much that I DO NOT want to do surgery but I really

am

> > out of ideas. The only way I could get her to sleep with the

shoes

> > on was on her belly.

> >

> > Does anyone have any helpful information for us....??? We are

going

> > to see the Dr on the 28th and talking about surgery. I also

notice

> > that the leg with the club foot seems to be a tiny bit

shorter...

> > has anyone had any concerns with that before? Is it because of

the

> > bend and once it is corrected it catches up?? The Dr told us

also

> > that the heel bone doesn't " drop " until they are about 2 years

> > old... is that true? Could that be why it seems shorter?

> >

> > Thanks for listening....

> > God Bless all of us....

> >

> > The Ciccione's (Chicago, Il)

> > Rod and

> >

> > Chesney 8.7.00

> > Delaney 6.24.04

> > Avery 6.24.04 left club foot

>

>

>

>

>

>

[Guest guest]

Well said ee!

Before having surgery, with the right ponseti doctor, possibly even going to

Iowa by

whatever means necessary, it is possible to acheive full correction by means of

castings to

correct the relapse and then keeping those shoes on. Do whatever it takes to

get your

daughter to a qualified ponseti doctor. I strongly urge you if at all possible,

put everything

to the back burner and get to Iowa to see the master himself. Your daughter is

worth it.

Be the parent and do what needs to be done. once correction is acheived through

the

casting, keep those shoes on, even through the screams. You are concerned with

her

being developmentally behind, she will be even further if you wait and go the

surgical

route. My son is quite a bit behind and was premature as well. but because we

did

surgery first, he cannot acheive full correction, ever, except by the grace of

God. And

because his feet are not fully correct, he is way behind. The harder path is

usually the one

we are meant to be on.

10-09-03 severe atypical bl cf (2 surgeries, still not fully corrected,

faithfully

wearing the mitchell bar.)

> Rod and ,

>

> The shoes ARE an option, and a damn fine one at that. I can only wish my 1st

son had

been given that option but he wasn't and now he has crappy feet. Other parents

here

didn't know they had an option either, and their kids have crappy feet too.

The shoes ARE

an option (did I say that already?)

>

> First of all, at 9 months of age, your child has an excellent chance at

gaining a full non-

surgical correction via the Ponseti method (i.e. casting and FAB use). You

have nothing to

lose by trying. But if you opt for surgery, there is no going back and you do

lose the

option of trying a non=surgical approach.

>

> I wonder who your dr. is and where you are located. If we knew perhaps we

could point

you towards a Ponseti Doctor for a 2nd opinion and perhaps a new course of

treatment. It

probably woudn't take more than five or so castings to get her ship shape and in

to the

FAB again (hey guys notice I quit using the term DBB after reading the article

about Dennis

Brown!)

>

> And that is where the tough love comes in. It's likely, actually, that after

a series of

castings which acheive proper correction, she would go well in the FAB again.

Your

doctor was very wrong to reduce her hours from 23 to 12. It's a gradual

stepping down

process, from 23 to 18, to 16, to 14 to 12 over the course of many months maybe

past the

first year before you reach the 12 hour mark. Your dr. is not following

Ponseti protocol.

>

> My guess is that she began to relapse in those first days of drastic and non

protocol

hour-reduction thus causing the FAB to hurt her feet. A non-corrected, or a

relapsed foot,

will hurt in the FAB.

>

> If your dr. is already talking a surgical correction option, I'd run. There

is no excuse

for surgery on a 9 month old baby that I'm aware of.

>

> As for your other kids - well, they need to just deal with it, and so do you.

Consider

rearranging the sleeping system so if she screams she's not so noisy to them.

Consider

the temporary and selective use of Benadryl to help them all sleep. Consider

moving

grandma in for a few weeks to give you a hand if you're too tired. Find

options. Look for

solutions. If the FAB is fitting correctly, she will quickly adjust to its

wear. By taking if

off due to crying (assuming there is no pain), you will train her to cry until

they come off

rather than train her to wear it and thus the cycle you are currently in will

continue.

>

> A few nights or a week, even two weeks of hell in the house is better than

surgery. It's a

temporary condition to adjust to the FAB. Her throwing a fit (again, assuming

there is no

pain and it's only a fit because she hates it) is not going to do any permanent

harm to her

or your other kids. It's just going to be a bump in the road that as a FAMILY

you all have

to deal with for the health of this one infant. In later years your whole

family is going to

bend and deal with hassell when one or all are on various ball teams, etc., or

one has the

flu or one wants summer camp...whatever....and you have to shuffle them all

around and

one of them is going to suffer a little inconvienience and pout, kwim? As a

family you do

your best to support the needs of each other - and well, this baby has a need so

everyone

buck up and deal with the fact she needs to wear this thing.

>

> I know twins with a toddler is a hard row to hoe but again I stress this is a

temporary

window in time..... a temporary window to fix them non-surgically, and a

temporary

window of wearing the FAB. It's very small in the scheme of things. Surgery

holds no

guarentee but it does come with lots of risk, aside from typical surgical risk

such as

infection there is the risk it won't fix her feet. And then where will you be?

Back on the

operating table trying to get them fixed again...someone trying to fix someone

else's

screw up.

>

> This isn't a muffler job on the Honda that went wrong, it's your kid's feet,

the feet she'll

have to stand on the rest of your life. Wold from this group is a case

in point. Her

19 mo old son went the surgical route prior to the Ponseti route and he's all

kinds of

messed up....can't walk, special shoes (a modified FAB and other wise) physical

therapy

several times a week.....and yes, she's been to Dr. Ponseti personally many

times and he

can't help because the surgical damage has been done. Does that really sound

like a

good option to you? A safe risk to agree to? Is dragging your kid to physical

therapy, etc.,

every week sound like a nicer idea to deal with your crippled baby than a little

FAB wear?

You think your other two kids are inconvienced now, imagine when you gotta drag

them to

the therapy clinic or drop them off at sitters a couple times a week and all

the money

that'll cost to pay for the physical therapy, etc....... Think about it.

>

> Don't sell your baby out in the name of convienience is the bottom line.

>

> Lack of sleep is just tough darts, deal with it, this phase WILL pass. Tell

us where you

are located, find a 2nd opinin from a real Ponseti Doctor instead of what

appears to be

your cheap imitation, then get her re-casted, fixed and on her way to a normal

healthy

active life on regular feet.

>

> I do apologize I re-read this and it sounds pretty gruff but the fact is, you

have the

chance to do it right and it sounds like you're looking for reasons to justify a

short cut

(surgery) and I can't sympathise there. She's a baby, she can't make this

decision for

herself but supposeing she could, do you really think she'd want her feet cut

open and

rearranged? I have four clubbed feet running through my house and drive (like

many

others) 12 hours one way for each and every appointment to get it done right.

We packed

our family up last time and moved to the Mc house in Iowa for

three weeks

when my 2nd son was born so he could get the proper treatment. Lots of other

folks on

this board go even further; many from outside the USA come here. Some single

mom

here said she drove all the way cross country alone with her kids to get to

Iowa. You may

not have to drive so far, but any drive is worth it.

>

> Where there is a will there is a way and if she won't wear the FAB there is a

reason

behind it (not fitting/feet not corrected right). Get her fixed so it fits and

she'll wear it,

and if she doesn't like it well she's a baby what does she know, in ten years

she'll thank

you for being the meanest mommy she has. You wouldn't let her play with fire if

she

threw a fit for it, would you?

>

> ee, mother of two bcf (bilateral club feet) boys:

> - NON Ponseti Method Club Foot Disaster

> Everett - Dr. Ponseti Success Story

>

>

>

> >She did great wearing

> them

> > > full time for 3 months. Then the Dr said she could do just night

> > > time for 12 hours from then on. Avery decided she liked her

> freedom

> > > and after 3 night of wearing them she wouldn't cooperate at

> ALL!!!

> > > She would scream an " ear piercing " scream that would wake up the

> > > rest of the family. (If she was the only child MAYBE I could of

> > kept

> > > her in them). The minute we took them off she stopped so we

> tried a

> > > few different things to help her but nothing seemed to help. The

> Dr

> > > changed the degree of the shoes but said she couldn't do

> anymore.

> > > The foot has started turning in and has pretty much gone back to

> > > where it started... she hasn't had the shoes on in months now.

> She

> > > is 9 months old and we don't feel like we have many options at

> this

> > > time. The Dr told us the options were to go through castings

> again

> > > and start over with the shoes or more than likely surgery (which

> > she

> > > really talked down on... she doesn't want to see that happen but

> > the

> > > shoes aren't an option...)Avery is very difficult to get to

> > > cooperate even now. She is a very light sleeper. She has been

> > > through sooo much that I DO NOT want to do surgery but I really

> am

> > > out of ideas. The only way I could get her to sleep with the

> shoes

> > > on was on her belly.

> > >

> > > Does anyone have any helpful information for us....??? We are

> going

> > > to see the Dr on the 28th and talking about surgery. I also

> notice

> > > that the leg with the club foot seems to be a tiny bit

> shorter...

> > > has anyone had any concerns with that before? Is it because of

> the

> > > bend and once it is corrected it catches up?? The Dr told us

> also

> > > that the heel bone doesn't " drop " until they are about 2 years

> > > old... is that true? Could that be why it seems shorter?

> > >

> > > Thanks for listening....

> > > God Bless all of us....

> > >

> > > The Ciccione's (Chicago, Il)

> > > Rod and

> > >

> > > Chesney 8.7.00

> > > Delaney 6.24.04

> > > Avery 6.24.04 left club foot

> >

> >

> >

> >

> >

> >