Re: Gracye (might) need surgery... PLEASE HELP

June 30, 2004

Hi, e,

Congratulations on your baby girl!!! I remember your posts when you

were still expecting....

First of all- unless there are some very unusual circumstances with

Gracye's foot such as missing bones or if the clubfoot is associated

with a syndrome, her feet can most likely benefit from casting, if

not in fact be completely corrected. This doctor could just be very

uninformed. Is this doctor listed on Dr. Ponseti's qualified

physician's list? If you give us the region that you live in, or a

region that you could travel to for care (perhaps you have close

family in a metropolitan area), we can try to give you some names of

doctors that you could contact for a second opinion. I was also told

that my daughter needed surgery to correct her feet...many of us here

were told that surgery was the only option...but those doctors were

not correct. I went to Dr. Ponseti when my daughter was 4 months

old, and he fixed her feet without reconstructive surgery.

I hope this is encouraging to you.....please tell us a little more

about your situation, and hopefully we can help you and Gracye find a

great doctor! Do NOT worry about offending the doctor. If that

doctor is offended by you wanting to get a second opinion, then that

doctor deserves to leave the practice. All parents should be 100%

confident in the decisions they make on their child's behalf- and a

second or third or fourth opinion is 100% justified. Don't worry

about stepping on any toes- put your daughter and your peace of mind

first! (many of us learned this the hard way too! yes, it's easier

said than done, but you are your daughter's advocate....come out

fighting! ) By the way, if this doctor is not using the Ponseti

method, then you don't want them to apply the casts anyway as they

could cause more harm than good! Not all casting is equal!

I hope she's recovering from her surgeries well-

Hugs to you!

& (3-16-00)

left clubfoot

> Hello all...

> My name is e... and my little Gracye is four weeks old today. I

> just spoke to the NICU doc, who said that the Ortho came by and said

> that Gracye's Feet are so severe that Casting will not be of help.

He

> said that she will need to have surgery to fix her feet because the

> problem is that her bones are really messed up (making the clubfeet

> severe)....

>

> I am scared... (but I know GOD has it in his hands)...

> I just want to know what I should ask when I meet with him next

week.

> I am so eager to spare her another surgery... she already had two

> since birth and will probably have another one (unrelated to

clubfeet)

> and I feel kinda sad and dissapointed.... I was hoping her feet

would

> be fixable with casts...

>

> For those moms whose babies have had surgery... what was it like?

when

> was it done? How old was your child? Please provide me with as much

> information as possible. I want to be as informed as I can be when I

> meet with him.

>

> I also want to ask for a second opinion... how do I go about

> presenting it nicely without offending him or without compromising

> Gracye's care?

>

> Please please help...

>

> thanks and God Bless

>

> Please feel free to email me...

> mrscajuste@y...

> ms_nancye@h...

> e and Gracye..... JUNE 2, 2004

> Billateral Club Feeet

> and other special effects ****

June 30, 2004

e--

I agree with all that has said. Also congrats on the birth of

your little Gracye! My second opinion Dr. told us that (my

son) had severe clubfoot and that he would need 5-7 surgeries for

correction. was five days old at the time and he told us we

were not doing him any favor by not having him casted yet. We were

waiting on an appt. with a Ponseti trained Doctor at Shriner's

Hospital. He actually tried to make us feel guilty. We told him we

did not want to make any harsh decisions. He had his regular

clubfoot clinic on Wed. and this was a Monday. We told him we would

make an appt with him for Wed and see him if we hadn't heard anything

from Shriner's. He said it could be 5 or 6 weeks before we heard

from them. Shriner's left a msg on our answering machine that

evening. The next week we saw Dr. Dobbs (Ponseti Dr) who told us he

could correct with 4-7 casts with a minor procedure called a

tenotomy (didn't even require stitches). Which he did. is

almost 3 and runs around all over the place. Get a second opinion.

Research and make an informed decision that you don't regret later.

Pam and (8-12-01)

> Hello all...

> My name is e... and my little Gracye is four weeks old today. I

> just spoke to the NICU doc, who said that the Ortho came by and said

> that Gracye's Feet are so severe that Casting will not be of help.

He

> said that she will need to have surgery to fix her feet because the

> problem is that her bones are really messed up (making the clubfeet

> severe)....

>

> I am scared... (but I know GOD has it in his hands)...

> I just want to know what I should ask when I meet with him next

week.

> I am so eager to spare her another surgery... she already had two

> since birth and will probably have another one (unrelated to

clubfeet)

> and I feel kinda sad and dissapointed.... I was hoping her feet

would

> be fixable with casts...

>

> For those moms whose babies have had surgery... what was it like?

when

> was it done? How old was your child? Please provide me with as much

> information as possible. I want to be as informed as I can be when I

> meet with him.

>

> I also want to ask for a second opinion... how do I go about

> presenting it nicely without offending him or without compromising

> Gracye's care?

>

> Please please help...

>

> thanks and God Bless

>

> Please feel free to email me...

> mrscajuste@y...

> ms_nancye@h...

> e and Gracye..... JUNE 2, 2004

> Billateral Club Feeet

> and other special effects ****

June 30, 2004

e,

What said :~} Couldn't have said it better. Get that second, third,

fourth, fifth opinion (but if you find a Ponseti Trained doc you won't need

that many hehe) and forget about the doc getting bent out of shape. If he

does - would you want him to be your daughters caregiver anyway? I really

think... like said, unless there's some special circumstances that

this is one surgery you won't have to put her though.

I hope she is able to come home from the NICU very soon. I spent 12 long

days with my second in the NICU and it wasn't fun at all. I can hardly

imagine doing that for weeks and weeks~! Things will be much easier when

she's home. I promise!

Hang in there and let us know where you are so we can find a doc for you to

talk to.

Kori

Mama of

Kenton - 6/98

Merek - 3/00

Darbi - 3/28/03 - Rt. CF - DBB 12hr/d

(¨`·.·´¨)

`·.¸(¨`·.·´¨)

`·.¸.·´

June 30, 2004

Hi e-

Congrats on your little girl! Sorry she has gotten off to such a rough

start with surgies and all, but I'm sure she is a strong little girl and

will be home soon. I agree with the others that CF surgery is one you will

propably be able to avoid unless there are extra bones or missing bones.

Ask the doc is their extra or missing bones. If he says no then I would

highly doubt your child needs CD surgery.

My first two docs said surgery for my son too, we got lucky that the third

doc was Ponseti Certified and no surgery was needed. I had to get my pedi to

write me up referrals. I simply told him that if this was his son would he

do surgery before getting a second, third opinion etc. He said absolutely

not. I told him no one was going to cut into my baby without another

opinion, so he wrote another one up. Simply tell the doc that you don't want

any foot surgery preformed until you get a second opinion. If he gets upset

then I wouldn't want him touching my child at any means.

Please let us know the region you are in, so we can get you to a good

doctor!

>

>Reply-To: nosurgery4clubfoot

>To: nosurgery4clubfoot

>Subject: Gracye (might) need surgery... PLEASE HELP

>Date: Wed, 30 Jun 2004 21:16:23 -0000

>

>Hello all...

>My name is e... and my little Gracye is four weeks old today. I

>just spoke to the NICU doc, who said that the Ortho came by and said

>that Gracye's Feet are so severe that Casting will not be of help. He

>said that she will need to have surgery to fix her feet because the

>problem is that her bones are really messed up (making the clubfeet

>severe)....

>

>I am scared... (but I know GOD has it in his hands)...

>I just want to know what I should ask when I meet with him next week.

>I am so eager to spare her another surgery... she already had two

>since birth and will probably have another one (unrelated to clubfeet)

>and I feel kinda sad and dissapointed.... I was hoping her feet would

>be fixable with casts...

>

>For those moms whose babies have had surgery... what was it like? when

>was it done? How old was your child? Please provide me with as much

>information as possible. I want to be as informed as I can be when I

>meet with him.

>

>I also want to ask for a second opinion... how do I go about

>presenting it nicely without offending him or without compromising

>Gracye's care?

>

>Please please help...

>

>thanks and God Bless

>

>Please feel free to email me...

>mrscajuste@...

>ms_nancye@...

>e and Gracye..... JUNE 2, 2004

>Billateral Club Feeet

>and other special effects ****

>

_________________________________________________________________

Watch the online reality show Mixed Messages with a friend and enter to win

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June 30, 2004

Nancey,

Don't let anyone operate on those little feet! I read that Dr. Ponseti's

non-surgical method can correct almost all club feet and this is just an

observation, but it seems that the worse the clubfeet, the more likely that

surgery will just mess them up more and then the child has to have surgeries

their whole life.

Find a way to get to one of the Ponseti experts, or at least email photos of

your child's feet to Dr. Ponseti and see what he says. Don't trust this ortho

about surgery. Surgery is just the most common way to treat clubfoot, and it is

amazing when you look at the results of the nonsurgical option how much better

the feet are in the long run.

Robin & Rose

3/12/03 Right club foot.

mrscajuste mrscajuste@...> wrote:

Hello all...

My name is e... and my little Gracye is four weeks old today. I

just spoke to the NICU doc, who said that the Ortho came by and said

that Gracye's Feet are so severe that Casting will not be of help. He

said that she will need to have surgery to fix her feet because the

problem is that her bones are really messed up (making the clubfeet

severe)....

I am scared... (but I know GOD has it in his hands)...

I just want to know what I should ask when I meet with him next week.

I am so eager to spare her another surgery... she already had two

since birth and will probably have another one (unrelated to clubfeet)

and I feel kinda sad and dissapointed.... I was hoping her feet would

be fixable with casts...

For those moms whose babies have had surgery... what was it like? when

was it done? How old was your child? Please provide me with as much

information as possible. I want to be as informed as I can be when I

meet with him.

I also want to ask for a second opinion... how do I go about

presenting it nicely without offending him or without compromising

Gracye's care?

Please please help...

thanks and God Bless

Please feel free to email me...

mrscajuste@...

ms_nancye@...

e and Gracye..... JUNE 2, 2004

Billateral Club Feeet

and other special effects ****

June 30, 2004

e,

Everyone has said what I was going to say but let me add a more personal touch

in relating the story of my daughter who started life in the NICU:

My daughter was born with bilateral club feet which we were expecting, and they

were indescribable. The right one was so severe that the end of her leg bones

were all there was and next to them was her foot, balled backward and pointing

at her butt. Her left one was more like a normal club foot although both were

severely creased and fat but small. My OB said she'd seen lots of club feet in

her day but she'd never seen any quite like these. The high risk specialist

who had done the ultrasounds came to check her out because he was so dumbfounded

by what it looked like on the screen. He was also amazed. However, we had done

our homework, interviewed about a dozen Dr's in our area and had already chosen

one who was trained by Dr. Ponseti and knew things would be okay.

She spent 4 weeks in the NICU. The neonatalogist that was treating her had

never heard of the ponseti method and thought I was one of those crazy moms that

digs something up on the internet that is supposed to be a miracle cure and it

turns out to be a bunch of quackery. We informed them that we already had a

physician lined up but they insisted on having a ortho on staff there consult on

her case. He came in and started with the 'a year ago every child I treated had

surgery but now we try this method first.... " I stopped him and informed him

about the method and told him we had done lots of homework. He proceeded to

incorrectly cast her. It took me a day or so to insist that the casts come off

and the NICU staff thought I was nuts. But they soaked them off. The Dr.

returned and asked just what I expected him to do. I shared that HE needed to

manipulate the feet and HOLD THE CORRECTION while someone else casted her but he

didn't get that. He recast her incorrectly again and we lodged a complaint with

the staff. The story goes on but it never got better. We finally realized

that we had to get her out in order for her to be treated by the physician we

had chosen so we concentrated on her other health issues so she could be

released.

The day after we sprung her we took her to Dr. Ballock. He removed the casts

that had been applied in the NICU and made some quiet but disparaging remarks

about the work. Since we had talked on the phone already several times he knew

how I felt and concurred with my frustration. He correctly casted her through a

series of castings and now her feet are supple, straight and in shoes. There

has never been talk of surgery - even Dr. Ponseti has commented on how good they

look now compared to what they started out as. I'm sure that if I'd left her in

the care of the jerk in the NICU we'd be having surgery as I speak.

I shared my experience just to reinforce that YOU are your daughters best

advocate. Don't let them talk you in to anything you don't feel comfortable

with and get a second, third and fourth opinion if necessary before you let

someone perform surgery.

Oh, and to finish the story with a bit of irony - the week before she was

released, an article about the Ponseti method was published in the pediatric

journal and the neonatalogist actually read it. He never apologized but I felt

a bit vindicated. The week after she was released, Dr. Ballock did a physician

'talk' at the hospital where she had been and he said that the neonatalogist

came for about half of it and then left. The ortho that had treated her in the

hospital didn't come at all.

Hang in there. We're here for you when you have questions.

Chris

Gracye (might) need surgery... PLEASE HELP

Hello all...

My name is e... and my little Gracye is four weeks old today. I

just spoke to the NICU doc, who said that the Ortho came by and said

that Gracye's Feet are so severe that Casting will not be of help. He

said that she will need to have surgery to fix her feet because the

problem is that her bones are really messed up (making the clubfeet

severe)....

I am scared... (but I know GOD has it in his hands)...

I just want to know what I should ask when I meet with him next week.

I am so eager to spare her another surgery... she already had two

since birth and will probably have another one (unrelated to clubfeet)

and I feel kinda sad and dissapointed.... I was hoping her feet would

be fixable with casts...

For those moms whose babies have had surgery... what was it like? when

was it done? How old was your child? Please provide me with as much

information as possible. I want to be as informed as I can be when I

meet with him.

I also want to ask for a second opinion... how do I go about

presenting it nicely without offending him or without compromising

Gracye's care?

Please please help...

thanks and God Bless

Please feel free to email me...

mrscajuste@...

ms_nancye@...

e and Gracye..... JUNE 2, 2004

Billateral Club Feeet

and other special effects ****

June 30, 2004

e,

As for the second opinion I guess I'd just explain to the doctor that you've

heard many, many testimonials from parents who have used the Ponseti method and

you would like to explor the non=surgical option before subjecting the poor

girl to yet another operation. Don't worry so much about hurting the doctor's

feelings - no one else can protect your girl better than you and you owe it to

her to explore what is available before letting some doctor bully you in to his

method. Don't be bullied!!!!! Ponseti can do amazing things - maybe not this

time - but you won't know until you look in to it further.

My first son was treated by a poor doctor,...a dr. using a poor method I mean

and it really affected his success rate. At age 6 he still suffers a lot of

foot problems. Dr. Dietz (working with Ponseti in Iowa) had to do a tendon

transfer on my son because he did not get adequate care as an infant. My 2nd

son was taken DIRECTLY to Dr. Ponseti - I didn't mess around with local doctors

messing him up first!

From what I hear, Dr. Ponseti's method can be very successful even on babies

who are older than new born, so you're not in a HUGE hurry to get the feet

casted. You have time to educate yourself first.

Best of luck honey.

s.

Gracye (might) need surgery... PLEASE HELP

Hello all...

My name is e... and my little Gracye is four weeks old today. I

just spoke to the NICU doc, who said that the Ortho came by and said

that Gracye's Feet are so severe that Casting will not be of help. He

said that she will need to have surgery to fix her feet because the

problem is that her bones are really messed up (making the clubfeet

severe)....

I am scared... (but I know GOD has it in his hands)...

I just want to know what I should ask when I meet with him next week.

I am so eager to spare her another surgery... she already had two

since birth and will probably have another one (unrelated to clubfeet)

and I feel kinda sad and dissapointed.... I was hoping her feet would

be fixable with casts...

For those moms whose babies have had surgery... what was it like? when

was it done? How old was your child? Please provide me with as much

information as possible. I want to be as informed as I can be when I

meet with him.

I also want to ask for a second opinion... how do I go about

presenting it nicely without offending him or without compromising

Gracye's care?

Please please help...

thanks and God Bless

Please feel free to email me...

mrscajuste@...

ms_nancye@...

e and Gracye..... JUNE 2, 2004

Billateral Club Feeet

and other special effects ****

June 30, 2004

GOOD POINT that not all casting is equal!!!!