Re: Another Lurker steps forward into the light!

[Guest guest]

,

I too am new on the egroups. I read your story and it is almost identical to

that of our daughter . She is now 6 1/2 months old and has one more

week of her last casts after the tenotomy. We have been driving to Iowa from

Michigan because there are no qualified doctors in this entire area that can

do what Dr. Ponseti can do. He was the closest and we figured, if we're

going to drive, then we're going to the best! The other alternatives were

land and North Carolina. Way far away from our home!! We jumped at the

chance to see him because we too had nothing to lose. We barely even asked

him questions because we had already read so much and anything seemed better

than what our previous doctor was going to do to our baby. I do admit it

seemed too good to be true, but I wanted so much to believe that it could

work and so I just prayed that it would. Sounds like our little ones are

going into the shoes around the same time! Let me know how things go. What a

great group this is! My husband always knows where to find me now. (and he's

the one that wanted Internet service, not me!) Also, about the part where

you mentioned the surgery can leave the foot (or feet) stiff, unfortunately

I saw the results of that on a little boy at the mall the other day. I

recognized his foot right away and could tell immediately he had the

surgery. He was 2 years old and his mom said that his foot is going back

again and is getting very stiff and he needs to have another surgery. I felt

so horrible for her, the look on her face told it all. I wish everybody knew

about Dr. Ponseti!

Holly

Another Lurker steps forward into the light!

>

>Dear Parents of Clubfoot Children,

>

>I was lucky enough to have a friend tell me about Dr. Ponseti's website.

>After calling (he was incredibly helpful)in Las Vegas, I found all

of

>you. Thank you, I've been reading the emails daily for two months now.

>

>Jordan (nearly 5 months) has two more weeks to go on his post-tenotomy

>casts. By way of introduction, I was going to write a brief history of our

>clubfoot escapades. Instead, I'll include a copy of our story I'm adding

to

>the Baby Announcements (snail mail) I'm finally sending out (what other

>excuse do I have for waiting soooo long past his birth)! Most of the

>following information I gleaned from the nosurgery4clubfoot conversations I

>observed, so thanks again.

>

>

> " Jordan was born with two clubbed feet. Clubfoot occurs in one in 1000

>births; and is a result of genetics and/or position in the womb. I

>suspect, in our case, his was a result of both.

> After three months of weekly casts and no resulting stretch in the

>offending tendons, our orthopedic surgeon announced that when Jordan was 10

>months old, he would require four hours of surgery per foot. After an

>incision encircling the back of his foot from big toe to little, the Dr.

>would use a " Z " cut to slice his major tendons in half and suture the ends

>together. He said Jordan wouldn't suffer much discomfort because he would

>receive morphine for the pain. Dr. Godley(head of Orthopedic Surgery at

>Kaiser, Santa Theresa Hospital; San , CA) knew of no other treatments

>that would spare our tiny boy the pain and scarring of surgery.

> A friend told us about a website where a procedure called the Ponseti

>Method described correction without extensive surgery (in office procedure

>using local anesthetic). Dr. Ponseti had 30 years of data showing his

>procedure didn't cause the stiff feet, arthritis, and 37% rate of resurgery

>that conventional surgery did. Jordan now sees one of two doctors on the

>West Coast qualified to perform the Ponseti Method, Dr. Colburn at Kaiser,

>in Pleasanton, CA . Because this foot deformity is

considered

>rare, no major magazines will print Dr. Ponseti's story. We parents are

>left to get the word out there.

>

>Websites: http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Clubfeet.html

>(Dr. Ponseti's site)

>http://www.onelist.com/community/nosurgery4clubfoot (Where parents offer

>support, ask questions) "

>

>I'm sure I'll be writing with some DBB questions soon. Thank goodness for

>all of you, Eddie (aka Kathy) and Jordan (4-9-00)

>

>

>

>

>_________________________________________________________________________

>Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

>

>Share information about yourself, create your own public profile at

>http://profiles.msn.com.

>

>

>

[Guest guest]

Eddie/Kathy (not sure how to address you)

I'm so glad you found the Virtual Hospital Web Site (Thanks to that

friend of yours). It was my Mother In Law who found it for us.

Welcome to our group.

My name is Lori and my daughter Annika (now 17 months) was treated by

Dr. Ponseti.

I live in your neck of the woods (U.City) and know Dr. Colburn. I'm

so happy that you were able to go and see him!!!

If you have any desire to meet, just send me a personal email and we

can exchange #'s if you like. Would be happy to meet you.

email me at: gillam@...

By the way, your birth announcement was a FABULOUS idea!! It really

was a good thing you didn't get them sent off earlier; you wouldn't

have been able to include all the non-surgical info....

Lori and Annnika (3/30/99 bi-lateral)

http://albums.photopoint.com/j/AlbumIndex?u=76323 & a=601182

[Guest guest]

Dear Holly & Dave,

The only thing I regret about this Ponseti Method is that I'll never get a

chance to meet Dr. Ponseti. Whenever or Dr. Colburn (or anybody for

that matter) talks about him it is with the utmost admiration and respect.

I really feel badly for the people that find out about this treatment

alternative too late, like the lady and her two year old you saw at the

mall. I shiver to think how close we came to being in the same situation.

Fortunately, I had botched knee surgeries when I was in the 8th and 9th

grades, and am very anti-surgery. Unless my limb is detached and laying in

my lap, I'm not interested!

I'm also a bit disgusted with the reactions that some of the parents receive

from their doctors when they try to educate them about the Ponseti Method.

I dictated the URL for Dr. Ponseti's website to our first orthopedic

surgeon's nurse, when I called to get a referral to see Dr. Colburn. She

wrote down the information and then said, " I doubt that he will look at

this. " I guess that's what makes Dr. Colburn such a marvel. He made a

point of studying with Dr. Ponseti once he realized the effectiveness of his

Method. told me Dr. Colburn said, " I can finally sleep at night', as

Dr. Colburn had been doing the conventional surgery on clubfeet for 17

years. He hasn't done the conventional surgery since learning the Ponseti

Method. That's the kind of doctor that is all too rare in medicine.

I'm sure you'll be able to give me some helpful insights and I really

welcome your and everyone's input. Great to talk to you, Eddie (aka

Kathy)

>

>Reply-To: nosurgery4clubfootegroups

>To: <nosurgery4clubfootegroups>

>Subject: Re: Another Lurker steps forward into the

>light!

>Date: Fri, 1 Sep 2000 22:42:17 -0400

>

>,

>I too am new on the egroups. I read your story and it is almost identical

>to

>that of our daughter . She is now 6 1/2 months old and has one more

>week of her last casts after the tenotomy. We have been driving to Iowa

>from

>Michigan because there are no qualified doctors in this entire area that

>can

>do what Dr. Ponseti can do. He was the closest and we figured, if we're

>going to drive, then we're going to the best! The other alternatives were

>land and North Carolina. Way far away from our home!! We jumped at the

>chance to see him because we too had nothing to lose. We barely even asked

>him questions because we had already read so much and anything seemed

>better

>than what our previous doctor was going to do to our baby. I do admit it

>seemed too good to be true, but I wanted so much to believe that it could

>work and so I just prayed that it would. Sounds like our little ones are

>going into the shoes around the same time! Let me know how things go. What

>a

>great group this is! My husband always knows where to find me now. (and

>he's

>the one that wanted Internet service, not me!) Also, about the part where

>you mentioned the surgery can leave the foot (or feet) stiff, unfortunately

>I saw the results of that on a little boy at the mall the other day. I

>recognized his foot right away and could tell immediately he had the

>surgery. He was 2 years old and his mom said that his foot is going back

>again and is getting very stiff and he needs to have another surgery. I

>felt

>so horrible for her, the look on her face told it all. I wish everybody

>knew

>about Dr. Ponseti!

>Holly

> Another Lurker steps forward into the light!

>

>

> >

> >Dear Parents of Clubfoot Children,

> >

> >I was lucky enough to have a friend tell me about Dr. Ponseti's website.

> >After calling (he was incredibly helpful)in Las Vegas, I found all

>of

> >you. Thank you, I've been reading the emails daily for two months now.

> >

> >Jordan (nearly 5 months) has two more weeks to go on his post-tenotomy

> >casts. By way of introduction, I was going to write a brief history of

>our

> >clubfoot escapades. Instead, I'll include a copy of our story I'm adding

>to

> >the Baby Announcements (snail mail) I'm finally sending out (what other

> >excuse do I have for waiting soooo long past his birth)! Most of the

> >following information I gleaned from the nosurgery4clubfoot conversations

>I

> >observed, so thanks again.

> >

> >

> > " Jordan was born with two clubbed feet. Clubfoot occurs in one in 1000

> >births; and is a result of genetics and/or position in the womb. I

> >suspect, in our case, his was a result of both.

> > After three months of weekly casts and no resulting stretch in the

> >offending tendons, our orthopedic surgeon announced that when Jordan was

>10

> >months old, he would require four hours of surgery per foot. After an

> >incision encircling the back of his foot from big toe to little, the Dr.

> >would use a " Z " cut to slice his major tendons in half and suture the

>ends

> >together. He said Jordan wouldn't suffer much discomfort because he

>would

> >receive morphine for the pain. Dr. Godley(head of Orthopedic Surgery at

> >Kaiser, Santa Theresa Hospital; San , CA) knew of no other treatments

> >that would spare our tiny boy the pain and scarring of surgery.

> > A friend told us about a website where a procedure called the Ponseti

> >Method described correction without extensive surgery (in office

>procedure

> >using local anesthetic). Dr. Ponseti had 30 years of data showing his

> >procedure didn't cause the stiff feet, arthritis, and 37% rate of

>resurgery

> >that conventional surgery did. Jordan now sees one of two doctors on the

> >West Coast qualified to perform the Ponseti Method, Dr. Colburn at

>Kaiser,

> >in Pleasanton, CA . Because this foot deformity is

>considered

> >rare, no major magazines will print Dr. Ponseti's story. We parents are

> >left to get the word out there.

> >

> >Websites:

>http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Clubfeet.html

> >(Dr. Ponseti's site)

> >http://www.onelist.com/community/nosurgery4clubfoot (Where parents offer

> >support, ask questions) "

> >

> >I'm sure I'll be writing with some DBB questions soon. Thank goodness

>for

> >all of you, Eddie (aka Kathy) and Jordan (4-9-00)

> >

> >

> >

> >

> >_________________________________________________________________________

> >Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

> >

> >Share information about yourself, create your own public profile at

> >http://profiles.msn.com.

> >

> >

> >

[Guest guest]

Eddie,

Never say never!!!! From what I have seen, Dr. Ponseti makes regular

trips to California. We live in Iowa City, where Dr. Ponseti practices,

and I didn't meet him until this past January (when brought

in for a follow-up visit). We usually see Dr. Weinstein (also at

UIHC) and wouldn't trade him for the world.

When we started on this journey (clubfoot treatment), I wondered why so

many doctors seemed to do surgery since most of the info I found 2 1/2

years ago dealt with surgical treatment. I didn't know we were going

through something special and didn't know of Dr. Ponseti (believe it or

not) for quite some time. My husband still has not met Dr. Ponseti, but

is looking forward to doing so in a few weeks at the appreciation dinner

(I'm sure you've seen mentions of it).

kathryn aurand wrote:

>

>

[eGroups] My Groups | nosurgery4clubfoot Main Page | Start

a new group!

>

> Dear Holly & Dave,

>

> The only thing I regret about this Ponseti Method is that I'll never

> get a

> chance to meet Dr. Ponseti. Whenever or Dr. Colburn (or

> anybody for

> that matter) talks about him it is with the utmost admiration and

> respect.

>

> I really feel badly for the people that find out about this treatment

> alternative too late, like the lady and her two year old you saw at

> the

> mall. I shiver to think how close we came to being in the same

> situation.

> Fortunately, I had botched knee surgeries when I was in the 8th and

> 9th

> grades, and am very anti-surgery. Unless my limb is detached and

> laying in

> my lap, I'm not interested!

>

> I'm also a bit disgusted with the reactions that some of the parents

> receive

> from their doctors when they try to educate them about the Ponseti

> Method.

> I dictated the URL for Dr. Ponseti's website to our first orthopedic

> surgeon's nurse, when I called to get a referral to see Dr. Colburn.

> She

> wrote down the information and then said, " I doubt that he will look

> at

> this. " I guess that's what makes Dr. Colburn such a marvel. He made

> a

> point of studying with Dr. Ponseti once he realized the effectiveness

> of his

> Method. told me Dr. Colburn said, " I can finally sleep at

> night', as

> Dr. Colburn had been doing the conventional surgery on clubfeet for 17

>

> years. He hasn't done the conventional surgery since learning the

> Ponseti

> Method. That's the kind of doctor that is all too rare in medicine.

>

> I'm sure you'll be able to give me some helpful insights and I really

> welcome your and everyone's input. Great to talk to you, Eddie (aka

>

> Kathy)

>

>

> >

> >Reply-To: nosurgery4clubfootegroups

> >To: <nosurgery4clubfootegroups>

> >Subject: Re: Another Lurker steps forward into

> the

> >light!

> >Date: Fri, 1 Sep 2000 22:42:17 -0400

> >

> >,

> >I too am new on the egroups. I read your story and it is almost

> identical

> >to

> >that of our daughter . She is now 6 1/2 months old and has one

> more

> >week of her last casts after the tenotomy. We have been driving to

> Iowa

> >from

> >Michigan because there are no qualified doctors in this entire area

> that

> >can

> >do what Dr. Ponseti can do. He was the closest and we figured, if

> we're

> >going to drive, then we're going to the best! The other alternatives

> were

> >land and North Carolina. Way far away from our home!! We jumped

> at the

> >chance to see him because we too had nothing to lose. We barely even

> asked

> >him questions because we had already read so much and anything seemed

>

> >better

> >than what our previous doctor was going to do to our baby. I do admit

> it

> >seemed too good to be true, but I wanted so much to believe that it

> could

> >work and so I just prayed that it would. Sounds like our little ones

> are

> >going into the shoes around the same time! Let me know how things go.

> What

> >a

> >great group this is! My husband always knows where to find me now.

> (and

> >he's

> >the one that wanted Internet service, not me!) Also, about the part

> where

> >you mentioned the surgery can leave the foot (or feet) stiff,

> unfortunately

> >I saw the results of that on a little boy at the mall the other day.

> I

> >recognized his foot right away and could tell immediately he had the

> >surgery. He was 2 years old and his mom said that his foot is going

> back

> >again and is getting very stiff and he needs to have another surgery.

> I

> >felt

> >so horrible for her, the look on her face told it all. I wish

> everybody

> >knew

> >about Dr. Ponseti!

> >Holly

> > Another Lurker steps forward into the

> light!

> >

> >

> > >

> > >Dear Parents of Clubfoot Children,

> > >

> > >I was lucky enough to have a friend tell me about Dr. Ponseti's

> website.

> > >After calling (he was incredibly helpful)in Las Vegas, I

> found all

> >of

> > >you. Thank you, I've been reading the emails daily for two months

> now.

> > >

> > >Jordan (nearly 5 months) has two more weeks to go on his

> post-tenotomy

> > >casts. By way of introduction, I was going to write a brief

> history of

> >our

> > >clubfoot escapades. Instead, I'll include a copy of our story I'm

> adding

> >to

> > >the Baby Announcements (snail mail) I'm finally sending out (what

> other

> > >excuse do I have for waiting soooo long past his birth)! Most of

> the

> > >following information I gleaned from the nosurgery4clubfoot

> conversations

> >I

> > >observed, so thanks again.

> > >

> > >

> > > " Jordan was born with two clubbed feet. Clubfoot occurs in one in

> 1000

> > >births; and is a result of genetics and/or position in the womb.

> I

> > >suspect, in our case, his was a result of both.

> > > After three months of weekly casts and no resulting stretch in the

>

> > >offending tendons, our orthopedic surgeon announced that when

> Jordan was

> >10

> > >months old, he would require four hours of surgery per foot. After

> an

> > >incision encircling the back of his foot from big toe to little,

> the Dr.

> > >would use a " Z " cut to slice his major tendons in half and suture

> the

> >ends

> > >together. He said Jordan wouldn't suffer much discomfort because

> he

> >would

> > >receive morphine for the pain. Dr. Godley(head of Orthopedic

> Surgery at

> > >Kaiser, Santa Theresa Hospital; San , CA) knew of no other

> treatments

> > >that would spare our tiny boy the pain and scarring of surgery.

> > > A friend told us about a website where a procedure called the

> Ponseti

> > >Method described correction without extensive surgery (in office

> >procedure

> > >using local anesthetic). Dr. Ponseti had 30 years of data showing

> his

> > >procedure didn't cause the stiff feet, arthritis, and 37% rate of

> >resurgery

> > >that conventional surgery did. Jordan now sees one of two doctors

> on the

> > >West Coast qualified to perform the Ponseti Method, Dr. Colburn at

> >Kaiser,

> > >in Pleasanton, CA . Because this foot deformity is

> >considered

> > >rare, no major magazines will print Dr. Ponseti's story. We

> parents are

> > >left to get the word out there.

> > >

> > >Websites:

> >http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Clubfeet.html

> > >(Dr. Ponseti's site)

> > >http://www.onelist.com/community/nosurgery4clubfoot (Where parents

> offer

> > >support, ask questions) "

> > >

> > >I'm sure I'll be writing with some DBB questions soon. Thank

> goodness

> >for

> > >all of you, Eddie (aka Kathy) and Jordan (4-9-00)

> > >

> > >

> > >

> > >

> >

> >_________________________________________________________________________

>

> > >Get Your Private, Free E-mail from MSN Hotmail at

> http://www.hotmail.com.

> > >

> > >Share information about yourself, create your own public profile at

>

> > >http://profiles.msn.com.

> > >

> > >

> > >

[Guest guest]

Eddie,

I know exactly what you are saying about other doctors and their reactions

when you mention the ponseti method. We mentioned it to our ped ortho

surgeon when was 5 days old. We at that point knew basically nothing

about it ourselves. We just had an article my parents had found and took it

with us to our first appointment. She (our doctor) said she was aware of who

he was but told us it was just another way of trying to fix clubfoot and not

to believe everything we read on the Internet. She proceeded to put half

casts on and we questioned why they didn't go from toe to groin? She

said that toe to groin casts get no better correction than toe to knee and

it is easier on the baby to have them short. She proceeded to tell us that

the way that her department corrects clubfeet is the most widely used and

effective way of correcting the deformity in the U.S today. We felt we were

seeing the best doctor in our state and had heard many wonderful things

about her from previous parents with children with clubfeet. I met several

parents on our weekly visits who's children had just gone through the

surgery. Everytime, it terrified me to think would be one of them in

just a few short months. Our doctor used to tell us that we were the kind of

parents that if France wasn't so far away should go to the riviera for a

special kind of therapy treatment that they had over there. We had told her

from day one that we didn't want surgery and were willing to do what ever it

took to avoid it. I know now that she knew from day one that in her

" traditional method " was going to be back for surgery at 10 months.

After 3 months of half casts the surgery consultation date was set for

October. On our last appointment we over-heard our doctor tell a resident

that they were no longer casting in half casts. She had been to a seminar

where a Dr. Ponseti had spoken and their department was now going to cast to

the groin. Dave and I almost fainted! We questioned what she said and all

she said was that there was evidence that the full cast gets better results.

Nothing about the " method " .

Two months after that we got Internet service ourselves, my parents hardly

ever used theirs and said that the one article they pulled up 5 months ago

was all they found. We found a bunch more, obviously! I am in contact with

our old ped ortho and she knows what we have been doing with . I am

happy to say, she is now a believer and says her department is going to

switch to the " ponseti method " of treatment. She was very supportive when we

told her what we were planning to do and I hope that she goes to see Dr.

Ponseti in Iowa soon. We also have offered to bring in to " show her

the results " . We haven't heard back yet.

Holly

Another Lurker steps forward into the light!

>>

>>

>> >

>> >Dear Parents of Clubfoot Children,

>> >

>> >I was lucky enough to have a friend tell me about Dr. Ponseti's website.

>> >After calling (he was incredibly helpful)in Las Vegas, I found

all

>>of

>> >you. Thank you, I've been reading the emails daily for two months now.

>> >

>> >Jordan (nearly 5 months) has two more weeks to go on his post-tenotomy

>> >casts. By way of introduction, I was going to write a brief history of

>>our

>> >clubfoot escapades. Instead, I'll include a copy of our story I'm

adding

>>to

>> >the Baby Announcements (snail mail) I'm finally sending out (what other

>> >excuse do I have for waiting soooo long past his birth)! Most of the

>> >following information I gleaned from the nosurgery4clubfoot

conversations

>>I

>> >observed, so thanks again.

>> >

>> >

>> > " Jordan was born with two clubbed feet. Clubfoot occurs in one in 1000

>> >births; and is a result of genetics and/or position in the womb. I

>> >suspect, in our case, his was a result of both.

>> > After three months of weekly casts and no resulting stretch in the

>> >offending tendons, our orthopedic surgeon announced that when Jordan was

>>10

>> >months old, he would require four hours of surgery per foot. After an

>> >incision encircling the back of his foot from big toe to little, the Dr.

>> >would use a " Z " cut to slice his major tendons in half and suture the

>>ends

>> >together. He said Jordan wouldn't suffer much discomfort because he

>>would

>> >receive morphine for the pain. Dr. Godley(head of Orthopedic Surgery at

>> >Kaiser, Santa Theresa Hospital; San , CA) knew of no other

treatments

>> >that would spare our tiny boy the pain and scarring of surgery.

>> > A friend told us about a website where a procedure called the Ponseti

>> >Method described correction without extensive surgery (in office

>>procedure

>> >using local anesthetic). Dr. Ponseti had 30 years of data showing his

>> >procedure didn't cause the stiff feet, arthritis, and 37% rate of

>>resurgery

>> >that conventional surgery did. Jordan now sees one of two doctors on

the

>> >West Coast qualified to perform the Ponseti Method, Dr. Colburn at

>>Kaiser,

>> >in Pleasanton, CA . Because this foot deformity is

>>considered

>> >rare, no major magazines will print Dr. Ponseti's story. We parents are

>> >left to get the word out there.

>> >

>> >Websites:

>>http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Clubfeet.html

>> >(Dr. Ponseti's site)

>> >http://www.onelist.com/community/nosurgery4clubfoot (Where parents

offer

>> >support, ask questions) "

>> >

>> >I'm sure I'll be writing with some DBB questions soon. Thank goodness

>>for

>> >all of you, Eddie (aka Kathy) and Jordan (4-9-00)

>> >

>> >

>> >

>> >

>>

>_________________________________________________________________________

>> >Get Your Private, Free E-mail from MSN Hotmail at

http://www.hotmail.com.

>> >

>> >Share information about yourself, create your own public profile at

>> >http://profiles.msn.com.

>> >

>> >

>> >

[Guest guest]

Ok, here's another gift idea I thought of doing for Dr. P. Tell me if it

sounds too corny!!!Please!!

Have you ever seen those plaster kits that you can make your childs hand

prints in? Well, they now have one out that isn't just a print but a mold of

the whole hand that can be displayed on a plaque. They also include a brass

name plate to have engraved. I was thinking of doing one of 's feet

(one foot) and maybe having it bronzed, attach it to the plaque and engrave

a thank you message on it with her name included and send it to Dr. P. after

Monday when she gets her cast off. What do you think? Do you think your Dr.

Colburn would like that?

Holly

----Original Message-----

To: nosurgery4clubfootegroups <nosurgery4clubfootegroups>

Date: Sunday, September 03, 2000 7:32 PM

Subject: Re: Another Lurker steps forward into the

light!

>

>Dear & Holly,

>

>I feel exactly as you do; that Dr. Godley - the first ortho surgeon

assigned

>to us--knew from day one (2 days old) Jordan would be headed for surgery.

>But, initially, he said to give the below the knee casts three months to

>correct his feet, and then he could better decide. Dr. Godley assured us

>his rate of surgery was the same as most others, 80%.

>

>Also, what really set me off...when only he and I were talking he would get

>brusque, almost perturbed, when I'd ask questions. If a nurse, or

>especially if my husband were with us, then he was quite well behaved. So

>right away I started to doubt the glowing reports from other hospital

staff,

>etc. I insisted my husband come with me for the last session before

>scheduling surgery when Jordan would be ten months. At first the Dr.

>wouldn't explain the surgery to him either. Eventually, when calmly

>persisted, he got out his medical text, and explained the procedure.

That's

>when I really nearly lost it.

>

>I have no such problems with Dr. Colburn. His manner is very casual,

normal

>even! When he performed the tenotomies on Jordan, he allowed me to

>attempt!! to breastfeed him. But once the two Drs grabbed hold of his

legs,

>Jordan preferred to cry. However, immediately after the punctures (I

didn't

>watch), he started to breastfeed, and completely ignored the recasting of

>his legs. About two minutes after the doctors finished, he fell sound

>asleep. I think he was " milk high " and just plain exhausted from all of

the

>hub-bub. I really couldn't believe he fell asleep; I was amazed.

>

>It takes a special kind of doctor to trust a mother not to swoon! We would

>like to give him and the nurses a gift. I intend to make up a basket of

>Starbucks coffees, chocolates, etc. to give to them. I have been wondering

>what the lady who gave Dr. Ponseti a gift gave him? I wish I could think

of

>something special! Eddie

>

>

>>

>>Reply-To: nosurgery4clubfootegroups

>>To: <nosurgery4clubfootegroups>

>>Subject: Re: Another Lurker steps forward into the

>>light!

>>Date: Sun, 3 Sep 2000 00:04:36 -0400

>>

>>Eddie,

>>I know exactly what you are saying about other doctors and their reactions

>>when you mention the ponseti method. We mentioned it to our ped ortho

>>surgeon when was 5 days old. We at that point knew basically nothing

>>about it ourselves. We just had an article my parents had found and took

it

>>with us to our first appointment. She (our doctor) said she was aware of

>>who

>>he was but told us it was just another way of trying to fix clubfoot and

>>not

>>to believe everything we read on the Internet. She proceeded to put half

>>casts on and we questioned why they didn't go from toe to groin? She

>>said that toe to groin casts get no better correction than toe to knee and

>>it is easier on the baby to have them short. She proceeded to tell us that

>>the way that her department corrects clubfeet is the most widely used and

>>effective way of correcting the deformity in the U.S today. We felt we

were

>>seeing the best doctor in our state and had heard many wonderful things

>>about her from previous parents with children with clubfeet. I met several

>>parents on our weekly visits who's children had just gone through the

>>surgery. Everytime, it terrified me to think would be one of them in

>>just a few short months. Our doctor used to tell us that we were the kind

>>of

>>parents that if France wasn't so far away should go to the riviera for a

>>special kind of therapy treatment that they had over there. We had told

>>her

>>from day one that we didn't want surgery and were willing to do what ever

>>it

>>took to avoid it. I know now that she knew from day one that in her

>> " traditional method " was going to be back for surgery at 10 months.

>>After 3 months of half casts the surgery consultation date was set for

>>October. On our last appointment we over-heard our doctor tell a resident

>>that they were no longer casting in half casts. She had been to a seminar

>>where a Dr. Ponseti had spoken and their department was now going to cast

>>to

>>the groin. Dave and I almost fainted! We questioned what she said and all

>>she said was that there was evidence that the full cast gets better

>>results.

>>Nothing about the " method " .

>>Two months after that we got Internet service ourselves, my parents hardly

>>ever used theirs and said that the one article they pulled up 5 months ago

>>was all they found. We found a bunch more, obviously! I am in contact with

>>our old ped ortho and she knows what we have been doing with . I am

>>happy to say, she is now a believer and says her department is going to

>>switch to the " ponseti method " of treatment. She was very supportive when

>>we

>>told her what we were planning to do and I hope that she goes to see Dr.

>>Ponseti in Iowa soon. We also have offered to bring in to " show her

>>the results " . We haven't heard back yet.

>>Holly

>> Another Lurker steps forward into the

>>light!

>> >>

>> >>

>> >> >

>> >> >Dear Parents of Clubfoot Children,

>> >> >

>> >> >I was lucky enough to have a friend tell me about Dr. Ponseti's

>>website.

>> >> >After calling (he was incredibly helpful)in Las Vegas, I found

>>all

>> >>of

>> >> >you. Thank you, I've been reading the emails daily for two months

>>now.

>> >> >

>> >> >Jordan (nearly 5 months) has two more weeks to go on his

post-tenotomy

>> >> >casts. By way of introduction, I was going to write a brief history

>>of

>> >>our

>> >> >clubfoot escapades. Instead, I'll include a copy of our story I'm

>>adding

>> >>to

>> >> >the Baby Announcements (snail mail) I'm finally sending out (what

>>other

>> >> >excuse do I have for waiting soooo long past his birth)! Most of the

>> >> >following information I gleaned from the nosurgery4clubfoot

>>conversations

>> >>I

>> >> >observed, so thanks again.

>> >> >

>> >> >

>> >> > " Jordan was born with two clubbed feet. Clubfoot occurs in one in

>>1000

>> >> >births; and is a result of genetics and/or position in the womb. I

>> >> >suspect, in our case, his was a result of both.

>> >> > After three months of weekly casts and no resulting stretch in the

>> >> >offending tendons, our orthopedic surgeon announced that when Jordan

>>was

>> >>10

>> >> >months old, he would require four hours of surgery per foot. After

an

>> >> >incision encircling the back of his foot from big toe to little, the

>>Dr.

>> >> >would use a " Z " cut to slice his major tendons in half and suture the

>> >>ends

>> >> >together. He said Jordan wouldn't suffer much discomfort because he

>> >>would

>> >> >receive morphine for the pain. Dr. Godley(head of Orthopedic Surgery

>>at

>> >> >Kaiser, Santa Theresa Hospital; San , CA) knew of no other

>>treatments

>> >> >that would spare our tiny boy the pain and scarring of surgery.

>> >> > A friend told us about a website where a procedure called the

Ponseti

>> >> >Method described correction without extensive surgery (in office

>> >>procedure

>> >> >using local anesthetic). Dr. Ponseti had 30 years of data showing

his

>> >> >procedure didn't cause the stiff feet, arthritis, and 37% rate of

>> >>resurgery

>> >> >that conventional surgery did. Jordan now sees one of two doctors on

>>the

>> >> >West Coast qualified to perform the Ponseti Method, Dr. Colburn at

>> >>Kaiser,

>> >> >in Pleasanton, CA . Because this foot deformity is

>> >>considered

>> >> >rare, no major magazines will print Dr. Ponseti's story. We parents

>>are

>> >> >left to get the word out there.

>> >> >

>> >> >Websites:

>> >>http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Clubfeet.html

>> >> >(Dr. Ponseti's site)

>> >> >http://www.onelist.com/community/nosurgery4clubfoot (Where parents

>>offer

>> >> >support, ask questions) "

>> >> >

>> >> >I'm sure I'll be writing with some DBB questions soon. Thank

goodness

>> >>for

>> >> >all of you, Eddie (aka Kathy) and Jordan (4-9-00)

>> >> >

>> >> >

>> >> >

>> >> >

>> >>

>>

>_________________________________________________________________________

>> >> >Get Your Private, Free E-mail from MSN Hotmail at

>>http://www.hotmail.com.

>> >> >

>> >> >Share information about yourself, create your own public profile at

>> >> >http://profiles.msn.com.

>> >> >

>> >> >

>> >> >

[Guest guest]

,

As it looks we are going to be driving into town on Sunday, arriving that

night and then leaving directly after our appointment on Monday afternoon.

We won't have time to meet this trip but I'm sure we will be back in 3

months for a check up. Maybe we could meet you and Jakob then! Talk to you

later,

Holly

Another Lurker steps forward into the

>> >>light!

>> >> >>

>> >> >>

>> >> >> >

>> >> >> >Dear Parents of Clubfoot Children,

>> >> >> >

>> >> >> >I was lucky enough to have a friend tell me about Dr. Ponseti's

>> >>website.

>> >> >> >After calling (he was incredibly helpful)in Las Vegas, I

found

>> >>all

>> >> >>of

>> >> >> >you. Thank you, I've been reading the emails daily for two months

>> >>now.

>> >> >> >

>> >> >> >Jordan (nearly 5 months) has two more weeks to go on his

>> post-tenotomy

>> >> >> >casts. By way of introduction, I was going to write a brief

history

>> >>of

>> >> >>our

>> >> >> >clubfoot escapades. Instead, I'll include a copy of our story I'm

>> >>adding

>> >> >>to

>> >> >> >the Baby Announcements (snail mail) I'm finally sending out (what

>> >>other

>> >> >> >excuse do I have for waiting soooo long past his birth)! Most of

the

>> >> >> >following information I gleaned from the nosurgery4clubfoot

>> >>conversations

>> >> >>I

>> >> >> >observed, so thanks again.

>> >> >> >

>> >> >> >

>> >> >> > " Jordan was born with two clubbed feet. Clubfoot occurs in one in

>> >>1000

>> >> >> >births; and is a result of genetics and/or position in the womb.

I

>> >> >> >suspect, in our case, his was a result of both.

>> >> >> > After three months of weekly casts and no resulting stretch in

the

>> >> >> >offending tendons, our orthopedic surgeon announced that when

Jordan

>> >>was

>> >> >>10

>> >> >> >months old, he would require four hours of surgery per foot.

After

>> an

>> >> >> >incision encircling the back of his foot from big toe to little,

the

>> >>Dr.

>> >> >> >would use a " Z " cut to slice his major tendons in half and suture

the

>> >> >>ends

>> >> >> >together. He said Jordan wouldn't suffer much discomfort because

he

>> >> >>would

>> >> >> >receive morphine for the pain. Dr. Godley(head of Orthopedic

Surgery

>> >>at

>> >> >> >Kaiser, Santa Theresa Hospital; San , CA) knew of no other

>> >>treatments

>> >> >> >that would spare our tiny boy the pain and scarring of surgery.

>> >> >> > A friend told us about a website where a procedure called the

>> Ponseti

>> >> >> >Method described correction without extensive surgery (in office

>> >> >>procedure

>> >> >> >using local anesthetic). Dr. Ponseti had 30 years of data showing

>> his

>> >> >> >procedure didn't cause the stiff feet, arthritis, and 37% rate of

>> >> >>resurgery

>> >> >> >that conventional surgery did. Jordan now sees one of two doctors

on

>> >>the

>> >> >> >West Coast qualified to perform the Ponseti Method, Dr. Colburn at

>> >> >>Kaiser,

>> >> >> >in Pleasanton, CA . Because this foot deformity is

>> >> >>considered

>> >> >> >rare, no major magazines will print Dr. Ponseti's story. We

parents

>> >>are

>> >> >> >left to get the word out there.

>> >> >> >

>> >> >> >Websites:

>> >> >>http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Clubfeet.html

>> >> >> >(Dr. Ponseti's site)

>> >> >> >http://www.onelist.com/community/nosurgery4clubfoot (Where

parents

>> >>offer

>> >> >> >support, ask questions) "

>> >> >> >

>> >> >> >I'm sure I'll be writing with some DBB questions soon. Thank

>> goodness

>> >> >>for

>> >> >> >all of you, Eddie (aka Kathy) and Jordan (4-9-00)

>> >> >> >

>> >> >> >

>> >> >> >

>> >> >> >

>> >> >>

>> >>

>>

>_________________________________________________________________________

>> >> >> >Get Your Private, Free E-mail from MSN Hotmail at

>> >>http://www.hotmail.com.

>> >> >> >

>> >> >> >Share information about yourself, create your own public profile

at

>> >> >> >http://profiles.msn.com.

>> >> >> >

>> >> >> >

>> >> >> >