Re: progress re:mistakes in shoes/bar

[Guest guest]

YOU GO MOM!!!

Stick to your guns!

Yes several of us have had a rough start before we found the group and/or Dr.

Ponseti and his trained Dr's. Some of us have had to fight for what we thought

was right from the get go and many of us found that changing Dr's helped.

Perhaps your experiences will help the medical staff rethink their practices and

look in to Dr. Ponseti's info more carefully. Hang in there - you are doing

what you think is right for your child and that is what counts!!!

Chris

progress re:mistakes in shoes/bar

Just thought I'd let others know how effective a mother becomes when

she no longer stands alone! After my interaction with this

wonderful group yesterday I became an effective advocate for my

beautiful baby!

to recap:before having the prescription filled for shoes/bar I

called the surgeons office for recommendation re:orthotic facility.

Had to wait 2 weeks for our initial app't and then was surprised and

chagrined to find ordering the shoes took 10 days-2weeks. I

protested further delay and managed to get a " rush " order of only 1

week. The orthotic tech asked ME what size shoes I wanted to order

and only had one sample which really didn't fit so I " guessed " with

the tech that a size 1 would do. (It's too big R,too small L)

Went back to pick up shoes and was so surprised to find them very

different than what I expected from Dr's explanation and photos on

Dr.P's website. Heels less than 3 " apart, bottom bar bent into

rocker shape....the prescription clearly stated heels to be 1 " wider

than shoulder, bar bent 10 degrees toward patient.

Struggled for the last 8 days to do our 23 hours...poor little guy

(7months and wants to MOVE) can't stand up even with support because

of the rocker bar, can't sit without toppling...so we found a foam

sitter and carried him around a lot, bought a new comfie high chair

and faithfully bent those feet the wrong way.

I am so thankful that I went to this group and back to the Ponsetti

website and confirmed my sense of something is NOT RIGHT!>

so....phoned the surgeon, he is seeing baby Thursday in Toronto

(2 1/2 hours of carseat to get there!), his office said TAKE IT

OFF!, called another orthotic place in town here and was told that

they stock all sizes, fit on site, immediately, and follow the

prescription carefully, so have appt Friday am (also they cost

less!), called the offending orthotic supplier and found out that

the INTERN who did our work believes that all DB bars MUST be done

by pelvic measurement. Am working on a refund-they offered me an

app't NEXT WEEK to review his shoes and re-order bar. No thanks.

When I asked the technician re: the bend in the bar she said she

definitely bent that bar. Yes,she did but it was opposite to the

instructions. So why is there no supervision, support for intern?

Has anybody else had baby in wrong kind of brace? Does it hurt the

correction? Hips? Should I sue (LOL)?

I believe every parent should be linked up to this support group or

one like it. It is the difference between bravely pretending you

know what you're doing and everything is fine...and truly " owning "

the experience and effectively parenting your child!

Thank you all for all the questions, answers, comments!

[Guest guest]

Hey, Margaret,

If you want to " advertise " our group, there is a poster in the files

section that you can print off and ask your doctor's office to either

hang up or distribute to new patients.

I'm glad you're getting some results- keep us posted on 's

progress.

Regards,

& (3-16-00)

left clubfoot

[Guest guest]

Ah! OWNING the experience is so accurate! Good for you!

s.

----- Original Message -----

Just thought I'd let others know how effective a mother becomes when

she no longer stands alone! After my interaction with this

wonderful group yesterday I became an effective advocate for my

beautiful baby!

to recap:before having the prescription filled for shoes/bar I

called the surgeons office for recommendation re:orthotic facility.

Had to wait 2 weeks for our initial app't and then was surprised and

chagrined to find ordering the shoes took 10 days-2weeks. I

protested further delay and managed to get a " rush " order of only 1

week. The orthotic tech asked ME what size shoes I wanted to order

and only had one sample which really didn't fit so I " guessed " with

the tech that a size 1 would do. (It's too big R,too small L)

Went back to pick up shoes and was so surprised to find them very

different than what I expected from Dr's explanation and photos on

Dr.P's website. Heels less than 3 " apart, bottom bar bent into

rocker shape....the prescription clearly stated heels to be 1 " wider

than shoulder, bar bent 10 degrees toward patient.

Struggled for the last 8 days to do our 23 hours...poor little guy

(7months and wants to MOVE) can't stand up even with support because

of the rocker bar, can't sit without toppling...so we found a foam

sitter and carried him around a lot, bought a new comfie high chair

and faithfully bent those feet the wrong way.

I am so thankful that I went to this group and back to the Ponsetti

website and confirmed my sense of something is NOT RIGHT!>

so....phoned the surgeon, he is seeing baby Thursday in Toronto

(2 1/2 hours of carseat to get there!), his office said TAKE IT

OFF!, called another orthotic place in town here and was told that

they stock all sizes, fit on site, immediately, and follow the

prescription carefully, so have appt Friday am (also they cost

less!), called the offending orthotic supplier and found out that

the INTERN who did our work believes that all DB bars MUST be done

by pelvic measurement. Am working on a refund-they offered me an

app't NEXT WEEK to review his shoes and re-order bar. No thanks.

When I asked the technician re: the bend in the bar she said she

definitely bent that bar. Yes,she did but it was opposite to the

instructions. So why is there no supervision, support for intern?

Has anybody else had baby in wrong kind of brace? Does it hurt the

correction? Hips? Should I sue (LOL)?

I believe every parent should be linked up to this support group or

one like it. It is the difference between bravely pretending you

know what you're doing and everything is fine...and truly " owning "

the experience and effectively parenting your child!

Thank you all for all the questions, answers, comments!

[Guest guest]

Margaret,

The spacing on your son's bar does sound way off--as you are well aware.

However, having it bent so that it has a rocker bottom is not necessarily wrong.

Typically the non-adjustable bar(usually gold) is bent into a U-shape. This

makes the feet dorsiflex, ie the toes point up towards the baby's head, and

keeps that achilles tendon nice and stretched. In the Ponsetti protocol, the

angle of dorsiflexion should be 15 degrees.

I know it makes for a unstable standing surface! You can see if they will put

the bend right at the shoe and leave the bar flat(although this compromises the

strength of the bar some). Or see if they will give you one of the red

adjustable bars which have some design features built-in for ease of use.

You are doing a heroic job! Please let us know if we can help with other things

as well.

Best,

Naomi

The Family

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

margaretdoner margaretdoner@...> wrote:

Just thought I'd let others know how effective a mother becomes when

she no longer stands alone! After my interaction with this

wonderful group yesterday I became an effective advocate for my

beautiful baby!

to recap:before having the prescription filled for shoes/bar I

called the surgeons office for recommendation re:orthotic facility.

Had to wait 2 weeks for our initial app't and then was surprised and

chagrined to find ordering the shoes took 10 days-2weeks. I

protested further delay and managed to get a " rush " order of only 1

week. The orthotic tech asked ME what size shoes I wanted to order

and only had one sample which really didn't fit so I " guessed " with

the tech that a size 1 would do. (It's too big R,too small L)

Went back to pick up shoes and was so surprised to find them very

different than what I expected from Dr's explanation and photos on

Dr.P's website. Heels less than 3 " apart, bottom bar bent into

rocker shape....the prescription clearly stated heels to be 1 " wider

than shoulder, bar bent 10 degrees toward patient.

Struggled for the last 8 days to do our 23 hours...poor little guy

(7months and wants to MOVE) can't stand up even with support because

of the rocker bar, can't sit without toppling...so we found a foam

sitter and carried him around a lot, bought a new comfie high chair

and faithfully bent those feet the wrong way.

I am so thankful that I went to this group and back to the Ponsetti

website and confirmed my sense of something is NOT RIGHT!>

so....phoned the surgeon, he is seeing baby Thursday in Toronto

(2 1/2 hours of carseat to get there!), his office said TAKE IT

OFF!, called another orthotic place in town here and was told that

they stock all sizes, fit on site, immediately, and follow the

prescription carefully, so have appt Friday am (also they cost

less!), called the offending orthotic supplier and found out that

the INTERN who did our work believes that all DB bars MUST be done

by pelvic measurement. Am working on a refund-they offered me an

app't NEXT WEEK to review his shoes and re-order bar. No thanks.

When I asked the technician re: the bend in the bar she said she

definitely bent that bar. Yes,she did but it was opposite to the

instructions. So why is there no supervision, support for intern?

Has anybody else had baby in wrong kind of brace? Does it hurt the

correction? Hips? Should I sue (LOL)?

I believe every parent should be linked up to this support group or

one like it. It is the difference between bravely pretending you

know what you're doing and everything is fine...and truly " owning "

the experience and effectively parenting your child!

Thank you all for all the questions, answers, comments!

[Guest guest]

Good for you for standing up for yourself and ! We too went

through a rough period at the beginning with the FAB - they sort of

pretended to know what they were doing and when I tried to interject,

I was shot down, so to speak. So, I quietly bit my tongue while I

was there, but as soon as I got home, I took it apart and re-set it.

When you get your new bar, be sure that it is adjustable. That way

you can re-adjust the width yourself as grows.

Good luck and keep us posted!

Daiga and Owen, 02/04/03

Unilateral LCF, FAB 14/24

P.S.-I'm a fellow Canadian! We're in Dartmouth (Halifax).

>

> Just thought I'd let others know how effective a mother becomes

when

> she no longer stands alone! After my interaction with this

> wonderful group yesterday I became an effective advocate for my

> beautiful baby!

> to recap:before having the prescription filled for shoes/bar I

> called the surgeons office for recommendation re:orthotic

facility.

> Had to wait 2 weeks for our initial app't and then was surprised

and

> chagrined to find ordering the shoes took 10 days-2weeks. I

> protested further delay and managed to get a " rush " order of only 1

> week. The orthotic tech asked ME what size shoes I wanted to order

> and only had one sample which really didn't fit so I " guessed " with

> the tech that a size 1 would do. (It's too big R,too small L)

> Went back to pick up shoes and was so surprised to find them very

> different than what I expected from Dr's explanation and photos on

> Dr.P's website. Heels less than 3 " apart, bottom bar bent into

> rocker shape....the prescription clearly stated heels to be 1 " wider

> than shoulder, bar bent 10 degrees toward patient.

> Struggled for the last 8 days to do our 23 hours...poor little guy

> (7months and wants to MOVE) can't stand up even with support

because

> of the rocker bar, can't sit without toppling...so we found a foam

> sitter and carried him around a lot, bought a new comfie high chair

> and faithfully bent those feet the wrong way.

> I am so thankful that I went to this group and back to the Ponsetti

> website and confirmed my sense of something is NOT RIGHT!>

> so....phoned the surgeon, he is seeing baby Thursday in Toronto

> (2 1/2 hours of carseat to get there!), his office said TAKE IT

> OFF!, called another orthotic place in town here and was told that

> they stock all sizes, fit on site, immediately, and follow the

> prescription carefully, so have appt Friday am (also they cost

> less!), called the offending orthotic supplier and found out that

> the INTERN who did our work believes that all DB bars MUST be done

> by pelvic measurement. Am working on a refund-they offered me an

> app't NEXT WEEK to review his shoes and re-order bar. No thanks.

> When I asked the technician re: the bend in the bar she said she

> definitely bent that bar. Yes,she did but it was opposite to the

> instructions. So why is there no supervision, support for intern?

>

> Has anybody else had baby in wrong kind of brace? Does it hurt the

> correction? Hips? Should I sue (LOL)?

>

> I believe every parent should be linked up to this support group or

> one like it. It is the difference between bravely pretending you

> know what you're doing and everything is fine...and truly " owning "

> the experience and effectively parenting your child!

> Thank you all for all the questions, answers, comments!

[Guest guest]

Naomi

Thanks for the personal input. You are completely right and I am a liitle

chagrined to have been distressed...but the medical experiences we've had with

our little guy have been confusing and complicated so I think that has

pre-disposed me to assume the worst!! We do have an excellent Ponseti doctor

now, in Mississauga and our pediatrician is not " up " on clubfoot but has been

great otherwise. Baby has had various other issues - caught severe RSV when at

hosp to do tendon release (Sept 7)and now has bowel trouble because of mucous

etc so we have a few little hassles. If the orthotic technician could have

explained it as you did in the first place,,,,,, I spoke with our surgeon's

Toronto based orthotist and was re-assured. Thanks for your help. I comfort

myself by thinking how much help I'll be when I meet a Mom with a clubfoot

child!

Margaret

Naomi powellbugs@...> wrote:

Margaret,

The spacing on your son's bar does sound way off--as you are well aware.

However, having it bent so that it has a rocker bottom is not necessarily wrong.

Typically the non-adjustable bar(usually gold) is bent into a U-shape. This

makes the feet dorsiflex, ie the toes point up towards the baby's head, and

keeps that achilles tendon nice and stretched. In the Ponsetti protocol, the

angle of dorsiflexion should be 15 degrees.

I know it makes for a unstable standing surface! You can see if they will put

the bend right at the shoe and leave the bar flat(although this compromises the

strength of the bar some). Or see if they will give you one of the red

adjustable bars which have some design features built-in for ease of use.

You are doing a heroic job! Please let us know if we can help with other things

as well.

Best,

Naomi

The Family

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

margaretdoner margaretdoner@...> wrote:

Just thought I'd let others know how effective a mother becomes when

she no longer stands alone! After my interaction with this

wonderful group yesterday I became an effective advocate for my

beautiful baby!

to recap:before having the prescription filled for shoes/bar I

called the surgeons office for recommendation re:orthotic facility.

Had to wait 2 weeks for our initial app't and then was surprised and

chagrined to find ordering the shoes took 10 days-2weeks. I

protested further delay and managed to get a " rush " order of only 1

week. The orthotic tech asked ME what size shoes I wanted to order

and only had one sample which really didn't fit so I " guessed " with

the tech that a size 1 would do. (It's too big R,too small L)

Went back to pick up shoes and was so surprised to find them very

different than what I expected from Dr's explanation and photos on

Dr.P's website. Heels less than 3 " apart, bottom bar bent into

rocker shape....the prescription clearly stated heels to be 1 " wider

than shoulder, bar bent 10 degrees toward patient.

Struggled for the last 8 days to do our 23 hours...poor little guy

(7months and wants to MOVE) can't stand up even with support because

of the rocker bar, can't sit without toppling...so we found a foam

sitter and carried him around a lot, bought a new comfie high chair

and faithfully bent those feet the wrong way.

I am so thankful that I went to this group and back to the Ponsetti

website and confirmed my sense of something is NOT RIGHT!>

so....phoned the surgeon, he is seeing baby Thursday in Toronto

(2 1/2 hours of carseat to get there!), his office said TAKE IT

OFF!, called another orthotic place in town here and was told that

they stock all sizes, fit on site, immediately, and follow the

prescription carefully, so have appt Friday am (also they cost

less!), called the offending orthotic supplier and found out that

the INTERN who did our work believes that all DB bars MUST be done

by pelvic measurement. Am working on a refund-they offered me an

app't NEXT WEEK to review his shoes and re-order bar. No thanks.

When I asked the technician re: the bend in the bar she said she

definitely bent that bar. Yes,she did but it was opposite to the

instructions. So why is there no supervision, support for intern?

Has anybody else had baby in wrong kind of brace? Does it hurt the

correction? Hips? Should I sue (LOL)?

I believe every parent should be linked up to this support group or

one like it. It is the difference between bravely pretending you

know what you're doing and everything is fine...and truly " owning "

the experience and effectively parenting your child!

Thank you all for all the questions, answers, comments!

[Guest guest]

Maybe it's just the geographical area I live in or I'm just a bad salesperson -

but when I try to talk to people about the Ponseti Method, nobody seems

interested in hearing about any alternative approach. They want to talk about

the system they are using, i.e. surgery.

s.

----- Original Message -----

From: Naomi

.. Thanks for your help. I comfort myself by thinking how much help I'll be when

I meet a Mom with a clubfoot child!

Margaret

--

[Guest guest]

Maybe it's just the geographical area I live in or I'm just a bad salesperson -

but when I try to talk to people about the Ponseti Method, nobody seems

interested in hearing about any alternative approach. They want to talk about

the system they are using, i.e. surgery.

s.

----- Original Message -----

From: Naomi

.. Thanks for your help. I comfort myself by thinking how much help I'll be when

I meet a Mom with a clubfoot child!

Margaret

--

[Guest guest]

Hey-that must be universal. The general public are fascinated to

hear the " new " approach but health care profs are really

resistant...almost like " quack quack " ...and you probably only eat

organic food...

We ended up in a regional centre hospital with 10 days old

with TRD (transient respiratory distress) because he had polycythemia

(a placental transfusion of too many red blood cells giving severe

jaundice and then acute respiratory distress-it's rare but it happens)

Anyhow, everyone was so surprised that the 10 day old had a cast

already EVEN though this hospital is one that uses Ponseti approach

for club feet (supposedly). We saw 3 different pediatricians and

about 10 interns over our 4 day stay and they did NOT understand the

rationale behind the early start. The orthopedic surgeon we were

seeing up north at that time was so discouraged...he says many family

doctors and pediatricians don't refer newborns and it does make a

difference. That physician was doing his best but baby screamed the

entire time, every time he manipulated his foot. Also got out of his

casts on a regular basis and also was given " holidays " by dr to " see "

how foot would respond...? After 3 months he tried to refer us on to

the regional centre for tendon release and DBB but (wonderful free

health care and endless waits....) spent 5 weeks out of casts

and still no app't. We were so blessed when a vacationing surgeon

met us and said " I am a Ponseti grad. I will never do another

surgery. Bring him to me, next week, at my hospital and we'll back up

and get that foot back into position " . What an answer! This doctor

is so different even from the so-called Ponseti at our regional

centre. He is passionate about each and every individual little foot!

and didn't protest at all for the 3 different times he

manipulated his foot, OR wriggle out of his castings.

Does you child have 1 or 2 feet which need correction?

[Guest guest]

Hey-that must be universal. The general public are fascinated to

hear the " new " approach but health care profs are really

resistant...almost like " quack quack " ...and you probably only eat

organic food...

We ended up in a regional centre hospital with 10 days old

with TRD (transient respiratory distress) because he had polycythemia

(a placental transfusion of too many red blood cells giving severe

jaundice and then acute respiratory distress-it's rare but it happens)

Anyhow, everyone was so surprised that the 10 day old had a cast

already EVEN though this hospital is one that uses Ponseti approach

for club feet (supposedly). We saw 3 different pediatricians and

about 10 interns over our 4 day stay and they did NOT understand the

rationale behind the early start. The orthopedic surgeon we were

seeing up north at that time was so discouraged...he says many family

doctors and pediatricians don't refer newborns and it does make a

difference. That physician was doing his best but baby screamed the

entire time, every time he manipulated his foot. Also got out of his

casts on a regular basis and also was given " holidays " by dr to " see "

how foot would respond...? After 3 months he tried to refer us on to

the regional centre for tendon release and DBB but (wonderful free

health care and endless waits....) spent 5 weeks out of casts

and still no app't. We were so blessed when a vacationing surgeon

met us and said " I am a Ponseti grad. I will never do another

surgery. Bring him to me, next week, at my hospital and we'll back up

and get that foot back into position " . What an answer! This doctor

is so different even from the so-called Ponseti at our regional

centre. He is passionate about each and every individual little foot!

and didn't protest at all for the 3 different times he

manipulated his foot, OR wriggle out of his castings.

Does you child have 1 or 2 feet which need correction?

[Guest guest]

> " I am a Ponseti grad. I will never do another

> surgery. Bring him to me, next week, at my hospital and we'll back

up

> and get that foot back into position " . What an answer! This

doctor

> is so different even from the so-called Ponseti at our regional

> centre. He is passionate about each and every individual little

foot!

> and didn't protest at all for the 3 different times he

> manipulated his foot, OR wriggle out of his castings.

> Does you child have 1 or 2 feet which need correction?

Margaret, just out of curiousity, which doctor was this? Was it Dr.

Carey?

Thanks,

Daiga and Owen, 02/04/03

Unilateral LCF, FAB 14/24