Re: Baby's here...more confused than ever!

May 8, 2006

You smile and nod and thank them very much, then you go do what you believe is

right with out apology to those who seem to think they know more about your baby

than you do.

Oh ya, and take lots of photos of the feet before they start correction, you'll

want them some day!

s.

I know, it's my decision, and I shouldn't care, but we have a good

relationship with this doctor, that I would like to continue.

We're taking the little one on Wednesday for a checkup...any

suggestions about specific materials I could bring her?

I have so much stuff, I'm not sure what would be helpful and what

wouldn't.

Regardless of whether or not she agrees, we are going...I'd just like

to leave on good terms, so to speak!

Any advice most welcome.

BTW, anybody else get the feeling people think we just looked some

random doctor up on the Internet? Most of the doctors at the hospital,

and even some people in my family, seem to think we're seeing some

kind of quack, despite all the info I keep sending them.

Soooooo frustrating!!!

May 8, 2006

Don't worry about what anyone else thinks. You are making the absolute wisest

decision to go see Dr. Ponseti. Maybe your baby has nothing, maybe he has

something. Wouldn't it be the best thing to see the pro of clubfeet and hear

from him that it's nothing, rather than treat it as nothing now and find out

later that it is worse than thought and too late to fix it properly? As for

seeing a " quack " - everyone at the hospital thought I was off my rocker when,

after seeing my little guy's severe clubfoot, I told them it will be

straightened without surgery. They looked at me as though to say " poor thing,

she's too tired to think straight " . I wish you the best and hope it's nothing,

but if it is, know that you are taking the best course of action.

jennlinmcl39 wrote: Our little guy was born May Fourth! And

we have our first Ponseti appt

May 19th!

Here's my problem...we've gotten four different opinions from four

different peds! Everything from it's nothing at all...to it's

positional...to it's something but not clubfeet...to it's mild

clubfoot and will " correct itself " .

We have e-mailed pics to Dr. P, and are waiting to hear what he thinks.

However, we are still planning our trip to Iowa...how could you NOT

make sure???

Problem is, explaining all this to our ped, who is unfamiliar with the

Ponseti Method.

I know, it's my decision, and I shouldn't care, but we have a good

relationship with this doctor, that I would like to continue.

We're taking the little one on Wednesday for a checkup...any

suggestions about specific materials I could bring her?

I have so much stuff, I'm not sure what would be helpful and what

wouldn't.

Regardless of whether or not she agrees, we are going...I'd just like

to leave on good terms, so to speak!

Any advice most welcome.

BTW, anybody else get the feeling people think we just looked some

random doctor up on the Internet? Most of the doctors at the hospital,

and even some people in my family, seem to think we're seeing some

kind of quack, despite all the info I keep sending them.

Soooooo frustrating!!!

May 8, 2006

Congrats on your baby boy!!! What did you name him and how was your

labour btw?

I would take a copy of the Global Help Booklet. I gave one to our Ped

and he was very interested. If you have a good color printer, even

better, here is the link

>http://www.global-help.org/publications/Ponseti.2Ed.pdf

I have found that the only real experts on clubfoot are doctors that

treat a lot of patients with it....namely Ponseti doctors. Ped's

really don't see it that often so I would take this opportunity to

educate yours as much as you can. It would be great if she could see

your son's uncorrected feet and give them a thorough examination and

then let her see them when they are fully corrected....she will be

amazed I gaurantee!!

Good luck with your appt...so you are seeing Dr. Ponseti on the 19th?

I'm jealous lol, I live far far from Iowa. Anyway, please keep us

updated K

Smiles,

& Grace 22mos

urcf FAB 13hrs

> Our little guy was born May Fourth! And we have our first Ponseti

appt

> May 19th!

>

> Here's my problem...we've gotten four different opinions from four

> different peds! Everything from it's nothing at all...to it's

> positional...to it's something but not clubfeet...to it's mild

> clubfoot and will " correct itself " .

>

> We have e-mailed pics to Dr. P, and are waiting to hear what he

thinks.

>

> However, we are still planning our trip to Iowa...how could you NOT

> make sure???

>

> Problem is, explaining all this to our ped, who is unfamiliar with

the

> Ponseti Method.

>

> I know, it's my decision, and I shouldn't care, but we have a good

> relationship with this doctor, that I would like to continue.

>

> We're taking the little one on Wednesday for a checkup...any

> suggestions about specific materials I could bring her?

>

> I have so much stuff, I'm not sure what would be helpful and what

> wouldn't.

>

> Regardless of whether or not she agrees, we are going...I'd just

like

> to leave on good terms, so to speak!

>

> Any advice most welcome.

>

> BTW, anybody else get the feeling people think we just looked some

> random doctor up on the Internet? Most of the doctors at the

hospital,

> and even some people in my family, seem to think we're seeing some

> kind of quack, despite all the info I keep sending them.

>

> Soooooo frustrating!!!

>

May 8, 2006

Congratulations on the arrival of your littel fellow! What did you name him?

In general, clubfoot is a fairly easy and sure diagnosis. How frustrating to

not get a definite answer from people who *should* know. Hopefully, Dr Ponseti

will be able to give you a clear answer based on your pictures. And he'll

certainly be able to tell you what's going on when you go see him.

Are you trying to get your pediatrician to give you a referral to see Dr

Ponseti? I take it you will go see him regardless (as would I!), but you still

want your doctor to understand why you are insisting on seeing him. We can give

you copies of as many studies as you think you might need. There are many of

them out there--from treatment centers across the country (as well as

overseas)--that tell of the tremendous success doctors have been having treating

feet non-surgically.

Here are links to 2 resources that are not quite so technical as the articles

from orthopedic journals, but still aimed at medical professionals.

The first is the Global-HELP booklet. The introduction, by Dr Ponseti himself,

gives a nice overview of the method. You can print off a copy at:

http://www.global-help.org/publications/Ponseti.2Ed.pdf

The doctors in Iowa published an article in the journal _Pediatrics_ a few years

ago. The full text is available at:

http://pediatrics.aappublications.org/cgi/reprint/113/2/376

's site has a wealth of links to other studies, abstracts of studies and

newspaper articles:

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

And, of course, Dr Ponseti's site at the University of Iowa:

http://www.uihealthcare.com/topics/medicaldepartments/orthopaedics/clubfeet/inde\

x.html

Please let us know if there are any other questions we can help with. We wish

you and your family all the best. We'd love to get updates too!

Naomi

The Family, North Coast of California

Naomi Hannah(2/21/1) Jonah(6/20/3, corrected BCF, FAB 12-14/7)

jennlinmcl39 wrote: Our little guy was born May Fourth!

And we have our first Ponseti appt

May 19th!

Here's my problem...we've gotten four different opinions from four

different peds! Everything from it's nothing at all...to it's

positional...to it's something but not clubfeet...to it's mild

clubfoot and will " correct itself " .

We have e-mailed pics to Dr. P, and are waiting to hear what he thinks.

However, we are still planning our trip to Iowa...how could you NOT

make sure???

Problem is, explaining all this to our ped, who is unfamiliar with the

Ponseti Method.

I know, it's my decision, and I shouldn't care, but we have a good

relationship with this doctor, that I would like to continue.

We're taking the little one on Wednesday for a checkup...any

suggestions about specific materials I could bring her?

I have so much stuff, I'm not sure what would be helpful and what

wouldn't.

Regardless of whether or not she agrees, we are going...I'd just like

to leave on good terms, so to speak!

Any advice most welcome.

BTW, anybody else get the feeling people think we just looked some

random doctor up on the Internet? Most of the doctors at the hospital,

and even some people in my family, seem to think we're seeing some

kind of quack, despite all the info I keep sending them.

Soooooo frustrating!!!

May 9, 2006

Congrats on your little guy! Believe me you will feel so much better

once you go out to Ponseti. He's amazing as you'll find out. As far

as people not being supportive, I went through the same thing which

shocked me as my families always been supportive. However, we

changed to Ponseti after traveling out of state to another doctor for

over 6 months and a few people chose to be extremely judgemental and

rude about it. Yelling at me and asking me what the heck was I

thinking making a change like that after all the time spent with the

other doctor. I told them I was not a medical person, however, as a

mother I felt this was the best decision for our child and that's

what we were doing. They all ate crow later of course. You are

doing the right thing by following your mother's intuition. Take

care and have a great trip!

Sincerely,

Joyce

Proud Mommy to , 01-03-02, bcf

>

> Our little guy was born May Fourth! And we have our first Ponseti

appt

> May 19th!

>

> Here's my problem...we've gotten four different opinions from four

> different peds! Everything from it's nothing at all...to it's

> positional...to it's something but not clubfeet...to it's mild

> clubfoot and will " correct itself " .

>

> We have e-mailed pics to Dr. P, and are waiting to hear what he

thinks.

>

> However, we are still planning our trip to Iowa...how could you NOT

> make sure???

>

> Problem is, explaining all this to our ped, who is unfamiliar with

the

> Ponseti Method.

>

> I know, it's my decision, and I shouldn't care, but we have a good

> relationship with this doctor, that I would like to continue.

>

> We're taking the little one on Wednesday for a checkup...any

> suggestions about specific materials I could bring her?

>

> I have so much stuff, I'm not sure what would be helpful and what

> wouldn't.

>

> Regardless of whether or not she agrees, we are going...I'd just

like

> to leave on good terms, so to speak!

>

> Any advice most welcome.

>

> BTW, anybody else get the feeling people think we just looked some

> random doctor up on the Internet? Most of the doctors at the

hospital,

> and even some people in my family, seem to think we're seeing some

> kind of quack, despite all the info I keep sending them.

>

> Soooooo frustrating!!!

>

May 9, 2006

Congrats!!! Sounds like you're doing the right thing, especially with the

pictures. He'll let you know if he doesn't really need to see you. And yes, I

know what you mean about people thinking you've lost it, to travel to Iowa for a

dr. you found on the internet. I was so very fortunate that our local dr. used

the ponseti method, in his words, Dr. Ponseti is " a legend " . You are totally

doing the right thing. One of the most important things you will learn as a

parent is to trust your gut. Don't ever do what others tell you if it totally

goes against your gut. You are the parent and you do what you think is best.

Afterall, 20 years from now you will be living with the result and probably

won't even remember the names of half the people who told you to do something

different! Good luck and sounds like you are on the right track! And enjoy that

sweet newborn of yours!

Marcia

Baby's here...more confused than ever!

Our little guy was born May Fourth! And we have our first Ponseti appt

May 19th!

Here's my problem...we've gotten four different opinions from four

different peds! Everything from it's nothing at all...to it's

positional...to it's something but not clubfeet...to it's mild

clubfoot and will " correct itself " .

We have e-mailed pics to Dr. P, and are waiting to hear what he thinks.

However, we are still planning our trip to Iowa...how could you NOT

make sure???

Problem is, explaining all this to our ped, who is unfamiliar with the

Ponseti Method.

I know, it's my decision, and I shouldn't care, but we have a good

relationship with this doctor, that I would like to continue.

We're taking the little one on Wednesday for a checkup...any

suggestions about specific materials I could bring her?

I have so much stuff, I'm not sure what would be helpful and what

wouldn't.

Regardless of whether or not she agrees, we are going...I'd just like

to leave on good terms, so to speak!

Any advice most welcome.

BTW, anybody else get the feeling people think we just looked some

random doctor up on the Internet? Most of the doctors at the hospital,

and even some people in my family, seem to think we're seeing some

kind of quack, despite all the info I keep sending them.

Soooooo frustrating!!!

May 9, 2006

It is very frustrating but as parents, no one knows and loves your child like

you do. Most doctors do not have patients that research and will travel the

country (or the world, in some cases) to get the best treatment for their

children. I work with doctors every day and in a good many of them, their

egos are also bigger than Iowa so going to another doctor is something they

can't understand because after all, they are the best. I find that most other

parents that I speak to about it are pretty supportive but we only drive an

hour for treatment as opposed to 10 hours. Then, they would probably think I

was nuts.

It is not surprising to me that you are getting different opinions from

pediatricians. When Kelsey was diagnosed by ultrasound, we spoke to our

pediatrician about it and in her years of practice, she had 1 other clubfoot

patient, which was corrected by our local doctor, surgically. When we switched

orthopedists, I didn't even discuss it with her. I did not need her referral

so I simply told her I was going to a new doctor in Cincinnati. I had already

gotten a referral from her to a urologist in Cincinnati because I wasn't happy

with that care here either. It may take getting the feet beautifully corrected

by Dr. POnseti to sway them to your side. It is hard to argue with those

perfect little feet obtained without the help of surgery.

The UNiversity of Iowa has some information on their website. Under the

links section on the ns4cf group yahoo page, there are links to a wealth of

information including the link to the University of Iowa.

Hope this helps,

Jenni

jennlinmcl39 wrote: Our little guy was born May

Fourth! And we have our first Ponseti appt

May 19th!

Here's my problem...we've gotten four different opinions from four

different peds! Everything from it's nothing at all...to it's

positional...to it's something but not clubfeet...to it's mild

clubfoot and will " correct itself " .

We have e-mailed pics to Dr. P, and are waiting to hear what he thinks.

However, we are still planning our trip to Iowa...how could you NOT

make sure???

Problem is, explaining all this to our ped, who is unfamiliar with the

Ponseti Method.

I know, it's my decision, and I shouldn't care, but we have a good

relationship with this doctor, that I would like to continue.

We're taking the little one on Wednesday for a checkup...any

suggestions about specific materials I could bring her?

I have so much stuff, I'm not sure what would be helpful and what

wouldn't.

Regardless of whether or not she agrees, we are going...I'd just like

to leave on good terms, so to speak!

Any advice most welcome.

BTW, anybody else get the feeling people think we just looked some

random doctor up on the Internet? Most of the doctors at the hospital,

and even some people in my family, seem to think we're seeing some

kind of quack, despite all the info I keep sending them.

Soooooo frustrating!!!

May 9, 2006

I think many of us have just gone on the strength of our convictions and gone to

see Dr. Ponseti, even though we didn't receive much outside support. My

pediatrician was not aware of the Ponseti method but saw that I was very anxious

about and needed a second opinion. He supported me taking her to Iowa

and filled out the paperwork for the Angel Flight. I saw it as a chance to

educate him about the method. He was very open to learning since he doesn't see

too many clubfeet as a general pediatrician and not a specialist. I also went

to Iowa without telling our local ortho who had worked with from birth,

casting her, just because I needed to know that I took my baby to the absolute

world's expert on club feet. I will never regret doing so.

I did feel from some people that they thought I was " overreacting " to take the

baby to Iowa from Texas, but I could totally care less what anyone else thinks!

The only person I needed to be supportive was my husband and when he saw how

important it was for me to go to Iowa, he was fine with it. We didn't tell our

local ortho about the trip until afterwards because we truly do like him and

plan to stay with him for check-ups with for the rest of the time she

needs them. When we told him, he was accepting of the trip and understood why

we went. We introduced him to the shoes and he now puts all of him

patients in them. He thanked me for teaching him something! A good doctor,

pediatrician or ortho or any other doc, will be open to learning and will not

take a " know it all " approach. I do approach docs respectfully, though, since

they have knowledge and experience and education that I do not have and they do

deserve to be respected for that if they are doing a good job and have the

patient's interests at heart, which both of our docs did (her ped and her

ortho). I continue to have a great relationship with both docs, who will be in

our lives for a long time to come.

I know this is a hard and confusing time. Go with your motherly instinct, go to

Iowa, don't worry about the doc's egos and all will work out fine. All the best

to you,

Carol and , 10-27-05, bcf

Baby's here...more confused than ever!

Our little guy was born May Fourth! And we have our first Ponseti appt

May 19th!

Here's my problem...we've gotten four different opinions from four

different peds! Everything from it's nothing at all...to it's

positional...to it's something but not clubfeet...to it's mild

clubfoot and will " correct itself " .

We have e-mailed pics to Dr. P, and are waiting to hear what he thinks.

However, we are still planning our trip to Iowa...how could you NOT

make sure???

Problem is, explaining all this to our ped, who is unfamiliar with the

Ponseti Method.

I know, it's my decision, and I shouldn't care, but we have a good

relationship with this doctor, that I would like to continue.

We're taking the little one on Wednesday for a checkup...any

suggestions about specific materials I could bring her?

I have so much stuff, I'm not sure what would be helpful and what

wouldn't.

Regardless of whether or not she agrees, we are going...I'd just like

to leave on good terms, so to speak!

Any advice most welcome.

BTW, anybody else get the feeling people think we just looked some

random doctor up on the Internet? Most of the doctors at the hospital,

and even some people in my family, seem to think we're seeing some

kind of quack, despite all the info I keep sending them.

Soooooo frustrating!!!

May 9, 2006

As for advice on materials, I am sure you have got great advice! But, to the

doctor question. I know how you feel. Our family was very supportive, but when

we told a nurse in the NICU that we didn't want him casted and told her about

the Ponseti Method, she thought we were nuts. She said, " You do what you want,

but I would never take my baby to a 90 year old doctor. " I said, " We will. "

But wanted to slap her. I would have said more, but she was responsible for

's care while we couldn't be there. Any nurse that would say that, I

don't know about. I have gotten looks or reactions from others, but most

doctors are supportive. If a doctor isn't supportive to what you want to do,

then I would consider if the doctor was worth your time. Just my experience

with about 10 different doctors for my little guy. We have been lucky and only

had to switch 2 of them.

Congratulations on you new little one!

11/19

jennlinmcl39 wrote:

Our little guy was born May Fourth! And we have our first Ponseti appt

May 19th!

Here's my problem...we've gotten four different opinions from four

different peds! Everything from it's nothing at all...to it's

positional...to it's something but not clubfeet...to it's mild

clubfoot and will " correct itself " .

We have e-mailed pics to Dr. P, and are waiting to hear what he thinks.

However, we are still planning our trip to Iowa...how could you NOT

make sure???

Problem is, explaining all this to our ped, who is unfamiliar with the

Ponseti Method.

I know, it's my decision, and I shouldn't care, but we have a good

relationship with this doctor, that I would like to continue.

We're taking the little one on Wednesday for a checkup...any

suggestions about specific materials I could bring her?

I have so much stuff, I'm not sure what would be helpful and what

wouldn't.

Regardless of whether or not she agrees, we are going...I'd just like

to leave on good terms, so to speak!

Any advice most welcome.

BTW, anybody else get the feeling people think we just looked some

random doctor up on the Internet? Most of the doctors at the hospital,

and even some people in my family, seem to think we're seeing some

kind of quack, despite all the info I keep sending them.

Soooooo frustrating!!!

May 9, 2006

It's a shame our society doesn't value the wisdom of the elderly.