Re: Re: reintro: 3.5 year old daughter with untreated bilateral clubfeet

[Guest guest]

Joyce, That's wonderful! Who was this DR in Utah so we can avoid him at all

cost?

yt94123 wrote:Hi Joyce & ,

We've been home a week now and glad to hear that everything is going

well for you! And yes, Dr. P is truly wonderful! And we're so glad

we found this group too (thanks to !)!

Our little one, , was also just treated by Dr. Ponseti - we

just had the tenotomy about 10 days ago & is wearing her

last cast. got to spend time with while we were at

the RMH - we hope to see you when we return on Oct 4!

-Yuuko &

> Hi everyone,

>

> I only posted once and it was back in early August right before we

> came out to Iowa. Thanks for those of you that gave me your input

to

> my question. We brought our little , , home from China

on

> Thanksgiving Day last year and she is now 3 1/2 years old. She

was

> born with bilateral clubfeet and she was walking, running,

jumping,

> and climbing on her feet since we got her. She does a great job

> keeping up with her brother who started kindergarten this year.

> Before we went to get her we knew she had received no treatment

for

> her clubfeet so I began researching doctors before we ever brought

> her home. My quest was to find a doctor who had experience

treating

> children who had actually walked on their clubfeet for some years

> before treatment. As you all know, that is a challenge in America

> because we treat our children right after they are born. My

search

> led us to a doctor in Utah that had experience with older

children.

> He had successfully corrected a 9 year old boy who had walked on

his

> clubfeet all those years through surgery. We are from Idaho, so

we

> drove to Utah for our first appointment in January. At this point

> our daughter was scared to of any medical person. They told

us

> her case was very severe and she would need 3 months of casting

with

> cast changes during that time. I asked if they did the Ponseti

> casting method and they said yes. We went back in May for a foot

> pressure study in the GATE lab which was very interesting and they

> told us they would call us with surgery dates for us in two weeks

> (they had decided to divide her surgery into 2 sessions the second

> one 6 weeks after the first because her case was so involved).

Six

> weeks went by and we still didn't have a date so I called and they

> said they wouldn't sit down to schedule any more surgeries until

> August and her doctor was booked out anyways till late

fall/winter.

> I was so frustrated with this delay as I felt that was too long

for

> her to wait medically plus I was going through the special booties

I

> had made for her like crazy since she couldn't wear shoes and I

knew

> it would be even harder in the cold weather. At this point I told

my

> husband maybe this is God's way of telling us we really aren't in

the

> right place. He said where else are we going to go as we had

already

> done the research a year and a half ago before we brought her

home?

> I said I didn't know but I needed to do this for my own piece of

mind

> even though we would probably find out we were still in the right

> place.

>

> So I began my search for doctors using the Ponseti casting method

and

> I e-mailed about 20 doctors that had that qualification telling

them

> briefly about 's situation and asking if they had

experience

> with older children with untreated clubfeet. I didn't tell them

> anything about the other medical advice as I wanted their own

opinion

> without the influence of any other doctor's opinion. Only 3 e-

mailed

> me back that they had this experience, so I kindly thanked the

others

> for their time and continued to talk to the other 3 docs. They

were

> in Missouri, New York, and Arizona. They were all so nice and

said

> they thought she would respond well with the casting method

although

> she would probably need some surgery. I was so impressed,

especially

> with the docs in New York and Missouri. I knew we were going to

> definately switch doctors however I didn't know which one.

>

> The nurse coordinator in Utah called back and I told him we had

done

> some more research and we were wondering if our doctor would

consider

> casting her before surgery to gain more flexibility and hopefully

> minimize the amount of surgery needed. When he got back with me

he

> said the doctor told him he didn't feel we'd gain anything from

the

> casting, but he'd do it if we really wanted to. He then told me

how

> they would do it and I immediately questioned him on some things

that

> didn't sound quite right for it to truly be the ponseti method.

He

> then told me, well you won't find him listed as one of the trained

> Ponseti doctors, but he has attended some of his clinics. I was

> really mad, as I felt they had lied to me in the beginning over a

> year ago when I asked if he was Ponseti trained. I knew then we'd

> never go back. However, I didn't cancel anything with them as I

> really didn't have anything else lined up yet.

>

> At this point I felt we would probably go to Missouri to see Dr.

> Dobbs, but I still had a few more questions. It was a Friday and

I

> thought to myself this is crazy here I'm making sure each doctor I

> talk to is trained in the Ponseti method why not try to find the

man

> himself who developed this method, as I thought it was named after

> him. I knew nothing about him and so I found his phone number and

> called him. I thought this is a shot i n the dark, but what does

it

> matter at this point. Joyce answered the phone and after just

> talking to her a few minutes she said he's right here in his

office

> I'm sure he'll take your call if he's not busy. Sure enough we

> talked for about an hour and I was floored. I couldn't believe it

as

> I truly didn't expect for anyone to answer the call. I asked him

if

> he'd do a consultation for us on her case and he said sure. I

then

> asked if he wanted me to e-mail him some pictures and he said no

that

> he would learn more by holding her foot in her hand. At that

point I

> knew he was the doctor for us. I then asked him if he'd take her

> case on and he said yes. I asked him when he could start working

> with her and I was amazed when he said as soon as you can get

here.

> He told me he was so sorry we got such bad advice and he felt she

> needed to be treated right away. After talking to Dr. Ponseti,

her

> nurse coordinator from Utah called to tell us that her doctor

wanted

> another appointment with us but it wasn't for it was for

my

> husband and I. I thought that was strange and asked why and her

> nurse said the doctor wanted to talk to us about the severity of

her

> case as he felt even after all the surgeries she would go through

he

> felt she would still very likely be an amputation case.

>

> The rest is history. Four days later on August 16th my son,

,

> and I hopped on a plane and came to Iowa City where we stayed at

the

> RMH for 3 cast changes before we went back to get my son started

in

> kindergarten. I only got to be home with him for 2 days of

> kindergarten and then and I drove back here (1531 miles)

with

> my dad who flew back the next day after we arrived. We decided

with

> rental car fees it would be more economical to drive. So needless

to

> say that took off a few days of my home time, but we all do what

we

> need to do to make it work. We've been out here a total of 6

weeks

> now and it looks like we won't be able to return home till

probably

> the middle to later part of October. She'll have surgery at the

end

> with both feet having the tenotomy, the right foot having a tendon

> transfer and also a plantar fascia release. There is a

possibility

> that she also has some extra bone growth that has developed from

all

> the walking she did on her feet before, but I believe they'll

handle

> that in another surgery later on. They will do x-rays after 2

more

> cast changes and know more.

>

> Dr. Ponseti truly is a miracle worker for us. We can never thank

him

> enough for all he is doing for her. He makes feel sooo

> special everytime she comes in and she loves going to get her new

> casts on. I have some incredible pictures of him with her and you

> can just see the genuine love for children in his eyes. It is

> amazing to see her excitement with the transformation of her feet

> with each cast change. Her goal in life as a toddler is to wear

> sandals. She explains her casts to everyone by telling them that

the

> man is making her feet straight for sandals. He has said she is

the

> oldest untreated child he has ever treated. We are on her 9th

cast

> now and have many more to go. You all are incredible, I only wish

I

> had found this group when we first learned about our daughter.

Take

> care and I plan to stay current with this group now and up on all

> that's happening. I hadn't logged till now since I first got

> accepted to the group before we came out.

>

> Sincerely,

> Joyce &

>

>

>

>

>

>

>

>

>

[Guest guest]

Joyce, That's wonderful! Who was this DR in Utah so we can avoid him at all

cost?

yt94123 wrote:Hi Joyce & ,

We've been home a week now and glad to hear that everything is going

well for you! And yes, Dr. P is truly wonderful! And we're so glad

we found this group too (thanks to !)!

Our little one, , was also just treated by Dr. Ponseti - we

just had the tenotomy about 10 days ago & is wearing her

last cast. got to spend time with while we were at

the RMH - we hope to see you when we return on Oct 4!

-Yuuko &

> Hi everyone,

>

> I only posted once and it was back in early August right before we

> came out to Iowa. Thanks for those of you that gave me your input

to

> my question. We brought our little , , home from China

on

> Thanksgiving Day last year and she is now 3 1/2 years old. She

was

> born with bilateral clubfeet and she was walking, running,

jumping,

> and climbing on her feet since we got her. She does a great job

> keeping up with her brother who started kindergarten this year.

> Before we went to get her we knew she had received no treatment

for

> her clubfeet so I began researching doctors before we ever brought

> her home. My quest was to find a doctor who had experience

treating

> children who had actually walked on their clubfeet for some years

> before treatment. As you all know, that is a challenge in America

> because we treat our children right after they are born. My

search

> led us to a doctor in Utah that had experience with older

children.

> He had successfully corrected a 9 year old boy who had walked on

his

> clubfeet all those years through surgery. We are from Idaho, so

we

> drove to Utah for our first appointment in January. At this point

> our daughter was scared to of any medical person. They told

us

> her case was very severe and she would need 3 months of casting

with

> cast changes during that time. I asked if they did the Ponseti

> casting method and they said yes. We went back in May for a foot

> pressure study in the GATE lab which was very interesting and they

> told us they would call us with surgery dates for us in two weeks

> (they had decided to divide her surgery into 2 sessions the second

> one 6 weeks after the first because her case was so involved).

Six

> weeks went by and we still didn't have a date so I called and they

> said they wouldn't sit down to schedule any more surgeries until

> August and her doctor was booked out anyways till late

fall/winter.

> I was so frustrated with this delay as I felt that was too long

for

> her to wait medically plus I was going through the special booties

I

> had made for her like crazy since she couldn't wear shoes and I

knew

> it would be even harder in the cold weather. At this point I told

my

> husband maybe this is God's way of telling us we really aren't in

the

> right place. He said where else are we going to go as we had

already

> done the research a year and a half ago before we brought her

home?

> I said I didn't know but I needed to do this for my own piece of

mind

> even though we would probably find out we were still in the right

> place.

>

> So I began my search for doctors using the Ponseti casting method

and

> I e-mailed about 20 doctors that had that qualification telling

them

> briefly about 's situation and asking if they had

experience

> with older children with untreated clubfeet. I didn't tell them

> anything about the other medical advice as I wanted their own

opinion

> without the influence of any other doctor's opinion. Only 3 e-

mailed

> me back that they had this experience, so I kindly thanked the

others

> for their time and continued to talk to the other 3 docs. They

were

> in Missouri, New York, and Arizona. They were all so nice and

said

> they thought she would respond well with the casting method

although

> she would probably need some surgery. I was so impressed,

especially

> with the docs in New York and Missouri. I knew we were going to

> definately switch doctors however I didn't know which one.

>

> The nurse coordinator in Utah called back and I told him we had

done

> some more research and we were wondering if our doctor would

consider

> casting her before surgery to gain more flexibility and hopefully

> minimize the amount of surgery needed. When he got back with me

he

> said the doctor told him he didn't feel we'd gain anything from

the

> casting, but he'd do it if we really wanted to. He then told me

how

> they would do it and I immediately questioned him on some things

that

> didn't sound quite right for it to truly be the ponseti method.

He

> then told me, well you won't find him listed as one of the trained

> Ponseti doctors, but he has attended some of his clinics. I was

> really mad, as I felt they had lied to me in the beginning over a

> year ago when I asked if he was Ponseti trained. I knew then we'd

> never go back. However, I didn't cancel anything with them as I

> really didn't have anything else lined up yet.

>

> At this point I felt we would probably go to Missouri to see Dr.

> Dobbs, but I still had a few more questions. It was a Friday and

I

> thought to myself this is crazy here I'm making sure each doctor I

> talk to is trained in the Ponseti method why not try to find the

man

> himself who developed this method, as I thought it was named after

> him. I knew nothing about him and so I found his phone number and

> called him. I thought this is a shot i n the dark, but what does

it

> matter at this point. Joyce answered the phone and after just

> talking to her a few minutes she said he's right here in his

office

> I'm sure he'll take your call if he's not busy. Sure enough we

> talked for about an hour and I was floored. I couldn't believe it

as

> I truly didn't expect for anyone to answer the call. I asked him

if

> he'd do a consultation for us on her case and he said sure. I

then

> asked if he wanted me to e-mail him some pictures and he said no

that

> he would learn more by holding her foot in her hand. At that

point I

> knew he was the doctor for us. I then asked him if he'd take her

> case on and he said yes. I asked him when he could start working

> with her and I was amazed when he said as soon as you can get

here.

> He told me he was so sorry we got such bad advice and he felt she

> needed to be treated right away. After talking to Dr. Ponseti,

her

> nurse coordinator from Utah called to tell us that her doctor

wanted

> another appointment with us but it wasn't for it was for

my

> husband and I. I thought that was strange and asked why and her

> nurse said the doctor wanted to talk to us about the severity of

her

> case as he felt even after all the surgeries she would go through

he

> felt she would still very likely be an amputation case.

>

> The rest is history. Four days later on August 16th my son,

,

> and I hopped on a plane and came to Iowa City where we stayed at

the

> RMH for 3 cast changes before we went back to get my son started

in

> kindergarten. I only got to be home with him for 2 days of

> kindergarten and then and I drove back here (1531 miles)

with

> my dad who flew back the next day after we arrived. We decided

with

> rental car fees it would be more economical to drive. So needless

to

> say that took off a few days of my home time, but we all do what

we

> need to do to make it work. We've been out here a total of 6

weeks

> now and it looks like we won't be able to return home till

probably

> the middle to later part of October. She'll have surgery at the

end

> with both feet having the tenotomy, the right foot having a tendon

> transfer and also a plantar fascia release. There is a

possibility

> that she also has some extra bone growth that has developed from

all

> the walking she did on her feet before, but I believe they'll

handle

> that in another surgery later on. They will do x-rays after 2

more

> cast changes and know more.

>

> Dr. Ponseti truly is a miracle worker for us. We can never thank

him

> enough for all he is doing for her. He makes feel sooo

> special everytime she comes in and she loves going to get her new

> casts on. I have some incredible pictures of him with her and you

> can just see the genuine love for children in his eyes. It is

> amazing to see her excitement with the transformation of her feet

> with each cast change. Her goal in life as a toddler is to wear

> sandals. She explains her casts to everyone by telling them that

the

> man is making her feet straight for sandals. He has said she is

the

> oldest untreated child he has ever treated. We are on her 9th

cast

> now and have many more to go. You all are incredible, I only wish

I

> had found this group when we first learned about our daughter.

Take

> care and I plan to stay current with this group now and up on all

> that's happening. I hadn't logged till now since I first got

> accepted to the group before we came out.

>

> Sincerely,

> Joyce &

>

>

>

>

>

>

>

>

>