New to board , have some questions...

[Guest guest]

Hello,

I am 32 weeks pregnant and my doctor told me at 16 weeks that my

baby could have clubbed foot, i had another ultrasound at 25 weeks

and the radiologist said both of them were clubbed. I had a regular

ultrasound, not the new 3D or 4D. Could the doctors be wrong? I am

reading up on clubbed feet just to know what to expect. They also

gave me an amnio to rule out any chromosonal abnormality and it came

out negative she didn't have any downs or anything. When i read

about clubbed feet they said there was a rare desease called AMC, it

scares me and i was wondering if anyones children have AMC and is

clubbed foot a characteristic of it? On the ultrasound wouldn't they

of seen if she had AMC, she has moved around and stuff. They have

told me that everything else with her looks great, just her feet

looked turned in. Any advise would help me out alot. I

automatically assume if they saw it on the ultrasound that she does

have clubbed feet so i am looking into the ponsetti method and other

pointers i can get on clothes, bathing and stuff like that. I guess

this is a long road till recovery isn't it? Thanks to all who reply.

[Guest guest]

Hi, and welcome! (Is your name ?) I'm glad you came over to

check out this group. There are many helpful parents here who have

been in the same position you are in.

As I said in my post to you on the other board, I have heard of an

occasional ultrasound being wrong, but I think you're smart to assume

it's correct and prepare yourself by doing research on treatment. (I

hope I didn't overstate it by mentioning the possibility.)

I did want to reassure you that clubfoot is most often " idiopathic " ,

occuring on its own for no apparent reason, and the baby is normal in

every other way. Unless you've been given reason to think there's

another more serious syndrome involved, clubfoot is most likely all

you'll be dealing with.

Have you read Dr. Ponseti's website yet? Here's the link for it:

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

You can look to see if there's a doctor near you on the qualified

physician list, and consult with him/her ahead of the birth.

About it being a long road.. If you start with a qualified Ponseti

method doctor right from birth, the baby should be finished with

casts by 2 months old, and out of full time brace wear by 5 months

old or so. Then she would only need to wear the brace at night,

during sleep. That's the point we're at with our daughter; her brace

is part of her nighttime routine, but during the day she wears normal

shoes like any other kid. You can see pictures of her foot in the

Photos section here under her name.

You have every reason to be optimistic.. especially if you go with

the Ponseti method! Everything can work out just fine, and the

correction process will be behind you before you know it.

I hope you get lots of support and help here! Enjoy the remaining

weeks of your pregnancy..

and

unilateral clubfoot, treated by Ponseti method

> Hello,

> I am 32 weeks pregnant and my doctor told me at 16 weeks that my

> baby could have clubbed foot, i had another ultrasound at 25 weeks

> and the radiologist said both of them were clubbed. I had a

regular

> ultrasound, not the new 3D or 4D. Could the doctors be wrong? I

am

> reading up on clubbed feet just to know what to expect. They also

> gave me an amnio to rule out any chromosonal abnormality and it

came

> out negative she didn't have any downs or anything. When i read

> about clubbed feet they said there was a rare desease called AMC,

it

> scares me and i was wondering if anyones children have AMC and is

> clubbed foot a characteristic of it? On the ultrasound wouldn't

they

> of seen if she had AMC, she has moved around and stuff. They have

> told me that everything else with her looks great, just her feet

> looked turned in. Any advise would help me out alot. I

> automatically assume if they saw it on the ultrasound that she does

> have clubbed feet so i am looking into the ponsetti method and

other

> pointers i can get on clothes, bathing and stuff like that. I

guess

> this is a long road till recovery isn't it? Thanks to all who

reply.

[Guest guest]

Hi! Welcome to our board! Congrats on your baby!!!

I recently asked a technician about the new 3D ultrasounds- she said

that they really aren't any better at diagnosis- they are mostly just

asthetic (look cooler)...that's why a lot of the hospitals don't have

the equipment, it's too expensive, and doesn't do anything more than

the normal equipment except give you a cooler picture. That said,

it's unlikely that your baby's clubfoot has been misdiagnosed via two

ultrasounds. However, you won't know the severity of the clubfoot

until the baby arrives. It could be a very mild case, it could also

be metatarsus adductus which often corrects itself.

Like posted, unless you have some other indications that might

point to additional problems, I would not worry at this point about

other syndromes or deformities.

When clubfoot is diagnosed via ultrasound, they usually target the

other joints to watch for contractures. Unless they mentioned other

possible issues, again, I wouldn't worry about AMC.

Also, as mentioned, if you start out with a qualified Ponseti

doctor right away, your child's treatment shouldn't take long at all.

Some children's clubfeet are so mild that they are corrected in 2

casts. Typically, it's 5-7 casts changed every 5-7 days, and then 23

hours/day in the foot abduction brace for 2-3 months, then night-time

in the brace for 2-3 years. The feet will actually be corrected when

the casting sessions are complete. The brace is to help prevent

regression (which is a risk until approx. age 4) and to keep the

tendons stretched. It isn't a long road to recovery (correction) per

se, however, it is a long road as a mother to stop worrying about

clubfoot. It does become " less " of a worry the older the child gets,

however, regression is always in the back of your mind. I suppose

once my daughter is an adult, then I'll start worrying about if her

kids will be born with it! Rest assured though, I am 100% satisfied

with my daughter's treatment (once we started going to Dr. Ponseti)

and outcome. When I first saw her foot after delivery, I never would

have imagined that it would look as beautiful and function as well as

it does today. I surely don't take that for granted!

My daughter is now almost 2.5, she has one clubfoot. Most people

cannot tell the difference between her clubfoot and non-clubfoot.

You can see pictures of her foot at birth under the files section

under the folder " Trevillian " and her foot at 2 years old under

the photos section in the folder " T " . There's also a folder

called " FAB " under the files section where you can see a picture of

the brace (also called DBB- Dennis Browne Bar).

Clothes- we just recently had a thread on that- you can search our

archives by keyword if you're interested. During the brace phase:

you'll want clothes with snaps all the way around the legs (no closed

cuffs). You also can't use outfits with feet built in. During the

casting phase, I didn't have any problems with any types of clothes.

Bathing- you'll be doing sponge baths until the casts come off for

good.

I have a website with lots of FAQs that you might want to check out,

I'll post the link below.

Feel free to ask us any questions. Let us know if you have any

questions about specific doctors or about treatment in general. Also

feel free to call or email Dr. Ponseti in Iowa.

I hope this helps-

& (3-16-00)

left clubfoot, switched to Ponseti Method at 4 months old

http://ponseticlubfoot.freeservers.com/

http://ponsetikids.freeservers.com/

> Hello,

> I am 32 weeks pregnant and my doctor told me at 16 weeks that my

> baby could have clubbed foot, i had another ultrasound at 25 weeks

> and the radiologist said both of them were clubbed. I had a

regular

> ultrasound, not the new 3D or 4D. Could the doctors be wrong? I

am

> reading up on clubbed feet just to know what to expect. They also

> gave me an amnio to rule out any chromosonal abnormality and it

came

> out negative she didn't have any downs or anything. When i read

> about clubbed feet they said there was a rare desease called AMC,

it

> scares me and i was wondering if anyones children have AMC and is

> clubbed foot a characteristic of it? On the ultrasound wouldn't

they

> of seen if she had AMC, she has moved around and stuff. They have

> told me that everything else with her looks great, just her feet

> looked turned in. Any advise would help me out alot. I

> automatically assume if they saw it on the ultrasound that she does

> have clubbed feet so i am looking into the ponsetti method and

other

> pointers i can get on clothes, bathing and stuff like that. I

guess

> this is a long road till recovery isn't it? Thanks to all who

reply.

[Guest guest]

Hi! Welcome to our board! Congrats on your baby!!!

I recently asked a technician about the new 3D ultrasounds- she said

that they really aren't any better at diagnosis- they are mostly just

asthetic (look cooler)...that's why a lot of the hospitals don't have

the equipment, it's too expensive, and doesn't do anything more than

the normal equipment except give you a cooler picture. That said,

it's unlikely that your baby's clubfoot has been misdiagnosed via two

ultrasounds. However, you won't know the severity of the clubfoot

until the baby arrives. It could be a very mild case, it could also

be metatarsus adductus which often corrects itself.

Like posted, unless you have some other indications that might

point to additional problems, I would not worry at this point about

other syndromes or deformities.

When clubfoot is diagnosed via ultrasound, they usually target the

other joints to watch for contractures. Unless they mentioned other

possible issues, again, I wouldn't worry about AMC.

Also, as mentioned, if you start out with a qualified Ponseti

doctor right away, your child's treatment shouldn't take long at all.

Some children's clubfeet are so mild that they are corrected in 2

casts. Typically, it's 5-7 casts changed every 5-7 days, and then 23

hours/day in the foot abduction brace for 2-3 months, then night-time

in the brace for 2-3 years. The feet will actually be corrected when

the casting sessions are complete. The brace is to help prevent

regression (which is a risk until approx. age 4) and to keep the

tendons stretched. It isn't a long road to recovery (correction) per

se, however, it is a long road as a mother to stop worrying about

clubfoot. It does become " less " of a worry the older the child gets,

however, regression is always in the back of your mind. I suppose

once my daughter is an adult, then I'll start worrying about if her

kids will be born with it! Rest assured though, I am 100% satisfied

with my daughter's treatment (once we started going to Dr. Ponseti)

and outcome. When I first saw her foot after delivery, I never would

have imagined that it would look as beautiful and function as well as

it does today. I surely don't take that for granted!

My daughter is now almost 2.5, she has one clubfoot. Most people

cannot tell the difference between her clubfoot and non-clubfoot.

You can see pictures of her foot at birth under the files section

under the folder " Trevillian " and her foot at 2 years old under

the photos section in the folder " T " . There's also a folder

called " FAB " under the files section where you can see a picture of

the brace (also called DBB- Dennis Browne Bar).

Clothes- we just recently had a thread on that- you can search our

archives by keyword if you're interested. During the brace phase:

you'll want clothes with snaps all the way around the legs (no closed

cuffs). You also can't use outfits with feet built in. During the

casting phase, I didn't have any problems with any types of clothes.

Bathing- you'll be doing sponge baths until the casts come off for

good.

I have a website with lots of FAQs that you might want to check out,

I'll post the link below.

Feel free to ask us any questions. Let us know if you have any

questions about specific doctors or about treatment in general. Also

feel free to call or email Dr. Ponseti in Iowa.

I hope this helps-

& (3-16-00)

left clubfoot, switched to Ponseti Method at 4 months old

http://ponseticlubfoot.freeservers.com/

http://ponsetikids.freeservers.com/

> Hello,

> I am 32 weeks pregnant and my doctor told me at 16 weeks that my

> baby could have clubbed foot, i had another ultrasound at 25 weeks

> and the radiologist said both of them were clubbed. I had a

regular

> ultrasound, not the new 3D or 4D. Could the doctors be wrong? I

am

> reading up on clubbed feet just to know what to expect. They also

> gave me an amnio to rule out any chromosonal abnormality and it

came

> out negative she didn't have any downs or anything. When i read

> about clubbed feet they said there was a rare desease called AMC,

it

> scares me and i was wondering if anyones children have AMC and is

> clubbed foot a characteristic of it? On the ultrasound wouldn't

they

> of seen if she had AMC, she has moved around and stuff. They have

> told me that everything else with her looks great, just her feet

> looked turned in. Any advise would help me out alot. I

> automatically assume if they saw it on the ultrasound that she does

> have clubbed feet so i am looking into the ponsetti method and

other

> pointers i can get on clothes, bathing and stuff like that. I

guess

> this is a long road till recovery isn't it? Thanks to all who

reply.

[Guest guest]

Hi! Welcome to our board! Congrats on your baby!!!

I recently asked a technician about the new 3D ultrasounds- she said

that they really aren't any better at diagnosis- they are mostly just

asthetic (look cooler)...that's why a lot of the hospitals don't have

the equipment, it's too expensive, and doesn't do anything more than

the normal equipment except give you a cooler picture. That said,

it's unlikely that your baby's clubfoot has been misdiagnosed via two

ultrasounds. However, you won't know the severity of the clubfoot

until the baby arrives. It could be a very mild case, it could also

be metatarsus adductus which often corrects itself.

Like posted, unless you have some other indications that might

point to additional problems, I would not worry at this point about

other syndromes or deformities.

When clubfoot is diagnosed via ultrasound, they usually target the

other joints to watch for contractures. Unless they mentioned other

possible issues, again, I wouldn't worry about AMC.

Also, as mentioned, if you start out with a qualified Ponseti

doctor right away, your child's treatment shouldn't take long at all.

Some children's clubfeet are so mild that they are corrected in 2

casts. Typically, it's 5-7 casts changed every 5-7 days, and then 23

hours/day in the foot abduction brace for 2-3 months, then night-time

in the brace for 2-3 years. The feet will actually be corrected when

the casting sessions are complete. The brace is to help prevent

regression (which is a risk until approx. age 4) and to keep the

tendons stretched. It isn't a long road to recovery (correction) per

se, however, it is a long road as a mother to stop worrying about

clubfoot. It does become " less " of a worry the older the child gets,

however, regression is always in the back of your mind. I suppose

once my daughter is an adult, then I'll start worrying about if her

kids will be born with it! Rest assured though, I am 100% satisfied

with my daughter's treatment (once we started going to Dr. Ponseti)

and outcome. When I first saw her foot after delivery, I never would

have imagined that it would look as beautiful and function as well as

it does today. I surely don't take that for granted!

My daughter is now almost 2.5, she has one clubfoot. Most people

cannot tell the difference between her clubfoot and non-clubfoot.

You can see pictures of her foot at birth under the files section

under the folder " Trevillian " and her foot at 2 years old under

the photos section in the folder " T " . There's also a folder

called " FAB " under the files section where you can see a picture of

the brace (also called DBB- Dennis Browne Bar).

Clothes- we just recently had a thread on that- you can search our

archives by keyword if you're interested. During the brace phase:

you'll want clothes with snaps all the way around the legs (no closed

cuffs). You also can't use outfits with feet built in. During the

casting phase, I didn't have any problems with any types of clothes.

Bathing- you'll be doing sponge baths until the casts come off for

good.

I have a website with lots of FAQs that you might want to check out,

I'll post the link below.

Feel free to ask us any questions. Let us know if you have any

questions about specific doctors or about treatment in general. Also

feel free to call or email Dr. Ponseti in Iowa.

I hope this helps-

& (3-16-00)

left clubfoot, switched to Ponseti Method at 4 months old

http://ponseticlubfoot.freeservers.com/

http://ponsetikids.freeservers.com/

> Hello,

> I am 32 weeks pregnant and my doctor told me at 16 weeks that my

> baby could have clubbed foot, i had another ultrasound at 25 weeks

> and the radiologist said both of them were clubbed. I had a

regular

> ultrasound, not the new 3D or 4D. Could the doctors be wrong? I

am

> reading up on clubbed feet just to know what to expect. They also

> gave me an amnio to rule out any chromosonal abnormality and it

came

> out negative she didn't have any downs or anything. When i read

> about clubbed feet they said there was a rare desease called AMC,

it

> scares me and i was wondering if anyones children have AMC and is

> clubbed foot a characteristic of it? On the ultrasound wouldn't

they

> of seen if she had AMC, she has moved around and stuff. They have

> told me that everything else with her looks great, just her feet

> looked turned in. Any advise would help me out alot. I

> automatically assume if they saw it on the ultrasound that she does

> have clubbed feet so i am looking into the ponsetti method and

other

> pointers i can get on clothes, bathing and stuff like that. I

guess

> this is a long road till recovery isn't it? Thanks to all who

reply.

[Guest guest]

Welcome to the group. My daughter was diagnosed with cf at the 20 week

ultrasound. I immediately came to the web and found this group. It's been a

real blessing. As far as a misdiagnosis, it has happened. There have been

babies who were supposed to have cf, but had good flexibility and did not

need treatment.

I also worried about other diseases. The specialist scared us to death. In

the end our daughter had bilateral cf(fairly severe according to Dr.

Ponseti). We flew to Iowa once a week for four weeks to see Dr. P. She was

corrected after 7 weeks in casts. Although CF is associated with other

diseases it seems from this board that most children have isolated CF. I

hope that puts your mind at ease a little.

As far as advice there's a lot I could say but the short of it is...

We used cotton pants that stretched over the casts and socks on her feet.

(noone ever noticed she had casts, one of my biggest fears was comments about

the casts and what people would think)

With the FAB we used clothes that snapped all the way up and down the leg

with no cuff. Dresses are also great for girls.

I'd definately go to Dr. Ponseti again. Even though we had to pay for

flights 3 times it was worth it. The other times we flew with Angel Flights,

an organization that flys children needing medical treatment for free. It

seemed like a really hard decision at the time and a lot of effort, but not

nearly as much as 6 months in casts, surgery, scarring and later problems.

You didn't say your name or where you are from?

Good luck with your pregnancy and birth.

HTH.

Joanne and Alaya 8-22-01

[Guest guest]

Welcome to the group. My daughter was diagnosed with cf at the 20 week

ultrasound. I immediately came to the web and found this group. It's been a

real blessing. As far as a misdiagnosis, it has happened. There have been

babies who were supposed to have cf, but had good flexibility and did not

need treatment.

I also worried about other diseases. The specialist scared us to death. In

the end our daughter had bilateral cf(fairly severe according to Dr.

Ponseti). We flew to Iowa once a week for four weeks to see Dr. P. She was

corrected after 7 weeks in casts. Although CF is associated with other

diseases it seems from this board that most children have isolated CF. I

hope that puts your mind at ease a little.

As far as advice there's a lot I could say but the short of it is...

We used cotton pants that stretched over the casts and socks on her feet.

(noone ever noticed she had casts, one of my biggest fears was comments about

the casts and what people would think)

With the FAB we used clothes that snapped all the way up and down the leg

with no cuff. Dresses are also great for girls.

I'd definately go to Dr. Ponseti again. Even though we had to pay for

flights 3 times it was worth it. The other times we flew with Angel Flights,

an organization that flys children needing medical treatment for free. It

seemed like a really hard decision at the time and a lot of effort, but not

nearly as much as 6 months in casts, surgery, scarring and later problems.

You didn't say your name or where you are from?

Good luck with your pregnancy and birth.

HTH.

Joanne and Alaya 8-22-01

[Guest guest]

Welcome to the group. My daughter was diagnosed with cf at the 20 week

ultrasound. I immediately came to the web and found this group. It's been a

real blessing. As far as a misdiagnosis, it has happened. There have been

babies who were supposed to have cf, but had good flexibility and did not

need treatment.

I also worried about other diseases. The specialist scared us to death. In

the end our daughter had bilateral cf(fairly severe according to Dr.

Ponseti). We flew to Iowa once a week for four weeks to see Dr. P. She was

corrected after 7 weeks in casts. Although CF is associated with other

diseases it seems from this board that most children have isolated CF. I

hope that puts your mind at ease a little.

As far as advice there's a lot I could say but the short of it is...

We used cotton pants that stretched over the casts and socks on her feet.

(noone ever noticed she had casts, one of my biggest fears was comments about

the casts and what people would think)

With the FAB we used clothes that snapped all the way up and down the leg

with no cuff. Dresses are also great for girls.

I'd definately go to Dr. Ponseti again. Even though we had to pay for

flights 3 times it was worth it. The other times we flew with Angel Flights,

an organization that flys children needing medical treatment for free. It

seemed like a really hard decision at the time and a lot of effort, but not

nearly as much as 6 months in casts, surgery, scarring and later problems.

You didn't say your name or where you are from?

Good luck with your pregnancy and birth.

HTH.

Joanne and Alaya 8-22-01

[Guest guest]

Oh bathing, we just gave her sponge baths during casting. I took stuff to

the hospital so after they soaked off the casts she was able to have a proper

bath. It worked well. Actually the road to recovery goes fast and isn't

such a big deal as it seems to you now. I remember thinking " 7 weeks in

casts, 2 years in the brace, that's such a long time " . But it goes really

fast and the brace is just a part of our daily life like changing diapers.

We are praying for you.

Joanne and Alaya 8-22-01

[Guest guest]

Joanne,

Sorry to not of said my name. My name is and my husband is

in the army we are stationed at Fort Riley, KS right now been here

for 2 years. Dr. Ponsetti gave me a doctor in Kansas City which is

like 3 hours from here one way that trained there and does his

method. Now if i can get the army insurance to pay for it. That is

going to be our biggest challange. Thanks so much for everyones

reply it has helped me alot. I shouldn't be so upset about clubbed

feet, and just pray nothing else is wrong with her. I know from the

amnio what they test for on that everything was normal. Thanks again

for everyones help.

> Welcome to the group. My daughter was diagnosed with cf at the 20

week

> ultrasound. I immediately came to the web and found this group.

It's been a

> real blessing. As far as a misdiagnosis, it has happened. There

have been

> babies who were supposed to have cf, but had good flexibility and

did not

> need treatment.

>

> I also worried about other diseases. The specialist scared us to

death. In

> the end our daughter had bilateral cf(fairly severe according to

Dr.

> Ponseti). We flew to Iowa once a week for four weeks to see Dr.

P. She was

> corrected after 7 weeks in casts. Although CF is associated with

other

> diseases it seems from this board that most children have isolated

CF. I

> hope that puts your mind at ease a little.

>

> As far as advice there's a lot I could say but the short of it is...

> We used cotton pants that stretched over the casts and socks on her

feet.

> (noone ever noticed she had casts, one of my biggest fears was

comments about

> the casts and what people would think)

>

> With the FAB we used clothes that snapped all the way up and down

the leg

> with no cuff. Dresses are also great for girls.

>

> I'd definately go to Dr. Ponseti again. Even though we had to pay

for

> flights 3 times it was worth it. The other times we flew with

Angel Flights,

> an organization that flys children needing medical treatment for

free. It

> seemed like a really hard decision at the time and a lot of effort,

but not

> nearly as much as 6 months in casts, surgery, scarring and later

problems.

>

> You didn't say your name or where you are from?

> Good luck with your pregnancy and birth.

> HTH.

> Joanne and Alaya 8-22-01

[Guest guest]

Joanne,

Sorry to not of said my name. My name is and my husband is

in the army we are stationed at Fort Riley, KS right now been here

for 2 years. Dr. Ponsetti gave me a doctor in Kansas City which is

like 3 hours from here one way that trained there and does his

method. Now if i can get the army insurance to pay for it. That is

going to be our biggest challange. Thanks so much for everyones

reply it has helped me alot. I shouldn't be so upset about clubbed

feet, and just pray nothing else is wrong with her. I know from the

amnio what they test for on that everything was normal. Thanks again

for everyones help.

> Welcome to the group. My daughter was diagnosed with cf at the 20

week

> ultrasound. I immediately came to the web and found this group.

It's been a

> real blessing. As far as a misdiagnosis, it has happened. There

have been

> babies who were supposed to have cf, but had good flexibility and

did not

> need treatment.

>

> I also worried about other diseases. The specialist scared us to

death. In

> the end our daughter had bilateral cf(fairly severe according to

Dr.

> Ponseti). We flew to Iowa once a week for four weeks to see Dr.

P. She was

> corrected after 7 weeks in casts. Although CF is associated with

other

> diseases it seems from this board that most children have isolated

CF. I

> hope that puts your mind at ease a little.

>

> As far as advice there's a lot I could say but the short of it is...

> We used cotton pants that stretched over the casts and socks on her

feet.

> (noone ever noticed she had casts, one of my biggest fears was

comments about

> the casts and what people would think)

>

> With the FAB we used clothes that snapped all the way up and down

the leg

> with no cuff. Dresses are also great for girls.

>

> I'd definately go to Dr. Ponseti again. Even though we had to pay

for

> flights 3 times it was worth it. The other times we flew with

Angel Flights,

> an organization that flys children needing medical treatment for

free. It

> seemed like a really hard decision at the time and a lot of effort,

but not

> nearly as much as 6 months in casts, surgery, scarring and later

problems.

>

> You didn't say your name or where you are from?

> Good luck with your pregnancy and birth.

> HTH.

> Joanne and Alaya 8-22-01

[Guest guest]

Hi.

My daughter was born in March 2002 with a left c/f. We

are on our 3rd doctor now. Our 1st one did the cast to

tight. The second was ok with the casting but then she

wanted to wait for 2 months so her foot could grow and

then she'd do surgery. In the mean time her foot was

relapsing. That's when I went on-line and found this

group. Sum things up: we go to Boston for the Ponseti

method and at 5 months old she is doing wonderful. She

has a few more weeks for being in the DBB shoes full

time. If I only checked the internet before she was

born we wouldn't have 'wasted' 2 months.

That's why I think it is WONDERFUL that you are doing

research before hand.

When Kaitlyn was in the cast everyone would always ask

what happened. We would tease and say we dropped her.

Wearing clothes wasn't a problem. The casted leg

would fit in most outfits. The main thing is to make

sure her cast doesn't get wet from her diaper.

Sometimes at night we had a problem but then I went to

the next size diaper for night time.

For bathing we just put her on the big baby sponge

that they sell at Babies R Us and gave her a sponge

bath. We would also put the baby sponge in the

plastic tub and bath her.

Take pictures of her feet and of her being in the

cast. Even though my daughter is only 5 months old

I'm already forgetting what her foot looked like and

wish I took more pictures of her feet instead of her

cute face!

Helen and Kaitlyn

--- mikeleslie2930 wrote:

> Hello,

> I am 32 weeks pregnant and my doctor told me at 16

> weeks that my

> baby could have clubbed foot, i had another

> ultrasound at 25 weeks

> and the radiologist said both of them were clubbed.

> I had a regular

> ultrasound, not the new 3D or 4D. Could the doctors

> be wrong? I am

> reading up on clubbed feet just to know what to

> expect. They also

> gave me an amnio to rule out any chromosonal

> abnormality and it came

> out negative she didn't have any downs or anything.

> When i read

> about clubbed feet they said there was a rare

> desease called AMC, it

> scares me and i was wondering if anyones children

> have AMC and is

> clubbed foot a characteristic of it? On the

> ultrasound wouldn't they

> of seen if she had AMC, she has moved around and

> stuff. They have

> told me that everything else with her looks great,

> just her feet

> looked turned in. Any advise would help me out

> alot. I

> automatically assume if they saw it on the

> ultrasound that she does

> have clubbed feet so i am looking into the ponsetti

> method and other

> pointers i can get on clothes, bathing and stuff

> like that. I guess

> this is a long road till recovery isn't it? Thanks

> to all who reply.

>

>

__________________________________________________

[Guest guest]

Hi.

My daughter was born in March 2002 with a left c/f. We

are on our 3rd doctor now. Our 1st one did the cast to

tight. The second was ok with the casting but then she

wanted to wait for 2 months so her foot could grow and

then she'd do surgery. In the mean time her foot was

relapsing. That's when I went on-line and found this

group. Sum things up: we go to Boston for the Ponseti

method and at 5 months old she is doing wonderful. She

has a few more weeks for being in the DBB shoes full

time. If I only checked the internet before she was

born we wouldn't have 'wasted' 2 months.

That's why I think it is WONDERFUL that you are doing

research before hand.

When Kaitlyn was in the cast everyone would always ask

what happened. We would tease and say we dropped her.

Wearing clothes wasn't a problem. The casted leg

would fit in most outfits. The main thing is to make

sure her cast doesn't get wet from her diaper.

Sometimes at night we had a problem but then I went to

the next size diaper for night time.

For bathing we just put her on the big baby sponge

that they sell at Babies R Us and gave her a sponge

bath. We would also put the baby sponge in the

plastic tub and bath her.

Take pictures of her feet and of her being in the

cast. Even though my daughter is only 5 months old

I'm already forgetting what her foot looked like and

wish I took more pictures of her feet instead of her

cute face!

Helen and Kaitlyn

--- mikeleslie2930 wrote:

> Hello,

> I am 32 weeks pregnant and my doctor told me at 16

> weeks that my

> baby could have clubbed foot, i had another

> ultrasound at 25 weeks

> and the radiologist said both of them were clubbed.

> I had a regular

> ultrasound, not the new 3D or 4D. Could the doctors

> be wrong? I am

> reading up on clubbed feet just to know what to

> expect. They also

> gave me an amnio to rule out any chromosonal

> abnormality and it came

> out negative she didn't have any downs or anything.

> When i read

> about clubbed feet they said there was a rare

> desease called AMC, it

> scares me and i was wondering if anyones children

> have AMC and is

> clubbed foot a characteristic of it? On the

> ultrasound wouldn't they

> of seen if she had AMC, she has moved around and

> stuff. They have

> told me that everything else with her looks great,

> just her feet

> looked turned in. Any advise would help me out

> alot. I

> automatically assume if they saw it on the

> ultrasound that she does

> have clubbed feet so i am looking into the ponsetti

> method and other

> pointers i can get on clothes, bathing and stuff

> like that. I guess

> this is a long road till recovery isn't it? Thanks

> to all who reply.

>

>

__________________________________________________

[Guest guest]

Hi.

My daughter was born in March 2002 with a left c/f. We

are on our 3rd doctor now. Our 1st one did the cast to

tight. The second was ok with the casting but then she

wanted to wait for 2 months so her foot could grow and

then she'd do surgery. In the mean time her foot was

relapsing. That's when I went on-line and found this

group. Sum things up: we go to Boston for the Ponseti

method and at 5 months old she is doing wonderful. She

has a few more weeks for being in the DBB shoes full

time. If I only checked the internet before she was

born we wouldn't have 'wasted' 2 months.

That's why I think it is WONDERFUL that you are doing

research before hand.

When Kaitlyn was in the cast everyone would always ask

what happened. We would tease and say we dropped her.

Wearing clothes wasn't a problem. The casted leg

would fit in most outfits. The main thing is to make

sure her cast doesn't get wet from her diaper.

Sometimes at night we had a problem but then I went to

the next size diaper for night time.

For bathing we just put her on the big baby sponge

that they sell at Babies R Us and gave her a sponge

bath. We would also put the baby sponge in the

plastic tub and bath her.

Take pictures of her feet and of her being in the

cast. Even though my daughter is only 5 months old

I'm already forgetting what her foot looked like and

wish I took more pictures of her feet instead of her

cute face!

Helen and Kaitlyn

--- mikeleslie2930 wrote:

> Hello,

> I am 32 weeks pregnant and my doctor told me at 16

> weeks that my

> baby could have clubbed foot, i had another

> ultrasound at 25 weeks

> and the radiologist said both of them were clubbed.

> I had a regular

> ultrasound, not the new 3D or 4D. Could the doctors

> be wrong? I am

> reading up on clubbed feet just to know what to

> expect. They also

> gave me an amnio to rule out any chromosonal

> abnormality and it came

> out negative she didn't have any downs or anything.

> When i read

> about clubbed feet they said there was a rare

> desease called AMC, it

> scares me and i was wondering if anyones children

> have AMC and is

> clubbed foot a characteristic of it? On the

> ultrasound wouldn't they

> of seen if she had AMC, she has moved around and

> stuff. They have

> told me that everything else with her looks great,

> just her feet

> looked turned in. Any advise would help me out

> alot. I

> automatically assume if they saw it on the

> ultrasound that she does

> have clubbed feet so i am looking into the ponsetti

> method and other

> pointers i can get on clothes, bathing and stuff

> like that. I guess

> this is a long road till recovery isn't it? Thanks

> to all who reply.

>

>

__________________________________________________

[Guest guest]

Dear New-to-Board,

A year and half ago, we also found out by ultrasound that

our daughter would have clubfeet. We went through similar

testings (amniocentesis, genetic questioning) as well to

rule out other anomolies. Thankfully, they told us she

probably had no other issues other than clubfeet (and they

were correct). is now a vibrant, healthy 14

month-old! She was basically corrected after she was a

month old via the Ponseti Method. With the exception of

sleep time shoe wearing and a minor set-back last march

requiring a minor procedure (a tenotomy that probably

should have been done initially), I barely have noticed

she was born with clubfeet! I remember very clearly how

difficult it was for me to finish out my pregnancy being

scared of what was to come (I was told at my 18 week

ultrasound). If only I would have known how uneventful the

treatment would be, I could have relaxed and enjoyed my

last months of pregnancy! By the way, I did read this

board and new of the Ponseti Method during my pregnancy

but assumed it was " too good to be true " . Well, it almost

was too good...but it was also very true!

My best advice for baby-buying items is to get all outfits

with snaps clear around the crotch area for shoe wearing.

Regular baby pants (usually one size larger) worked just

fine for the casts. We loved our Baby Bjorn because you

can use it with the shoes.

Best wishes!

Amy & (6-10-01)

[Guest guest]

Dear New-to-Board,

A year and half ago, we also found out by ultrasound that

our daughter would have clubfeet. We went through similar

testings (amniocentesis, genetic questioning) as well to

rule out other anomolies. Thankfully, they told us she

probably had no other issues other than clubfeet (and they

were correct). is now a vibrant, healthy 14

month-old! She was basically corrected after she was a

month old via the Ponseti Method. With the exception of

sleep time shoe wearing and a minor set-back last march

requiring a minor procedure (a tenotomy that probably

should have been done initially), I barely have noticed

she was born with clubfeet! I remember very clearly how

difficult it was for me to finish out my pregnancy being

scared of what was to come (I was told at my 18 week

ultrasound). If only I would have known how uneventful the

treatment would be, I could have relaxed and enjoyed my

last months of pregnancy! By the way, I did read this

board and new of the Ponseti Method during my pregnancy

but assumed it was " too good to be true " . Well, it almost

was too good...but it was also very true!

My best advice for baby-buying items is to get all outfits

with snaps clear around the crotch area for shoe wearing.

Regular baby pants (usually one size larger) worked just

fine for the casts. We loved our Baby Bjorn because you

can use it with the shoes.

Best wishes!

Amy & (6-10-01)

[Guest guest]

Dear New-to-Board,

A year and half ago, we also found out by ultrasound that

our daughter would have clubfeet. We went through similar

testings (amniocentesis, genetic questioning) as well to

rule out other anomolies. Thankfully, they told us she

probably had no other issues other than clubfeet (and they

were correct). is now a vibrant, healthy 14

month-old! She was basically corrected after she was a

month old via the Ponseti Method. With the exception of

sleep time shoe wearing and a minor set-back last march

requiring a minor procedure (a tenotomy that probably

should have been done initially), I barely have noticed

she was born with clubfeet! I remember very clearly how

difficult it was for me to finish out my pregnancy being

scared of what was to come (I was told at my 18 week

ultrasound). If only I would have known how uneventful the

treatment would be, I could have relaxed and enjoyed my

last months of pregnancy! By the way, I did read this

board and new of the Ponseti Method during my pregnancy

but assumed it was " too good to be true " . Well, it almost

was too good...but it was also very true!

My best advice for baby-buying items is to get all outfits

with snaps clear around the crotch area for shoe wearing.

Regular baby pants (usually one size larger) worked just

fine for the casts. We loved our Baby Bjorn because you

can use it with the shoes.

Best wishes!

Amy & (6-10-01)

[Guest guest]

Thank you all so much for your responses. I feel very positive now

about my babies feet getting fixed properly. I want to do the

ponsetti method and dr.ponsetti gave me a doctor in Kansas City that

worked with him. It is a 3 hour drive each way but so worth it and i

found out today that she takes our medical insurance so now after my

baby girl is born we just have to get a referral from the

pediatrition to go to her so the insurance will pay. I am sure my

pediatrition will do it she is very nice. Keep the tips coming, and

positive thoughts they sure help alot.

Thank you

> > Hello,

> > I am 32 weeks pregnant and my doctor told me at 16

> > weeks that my

> > baby could have clubbed foot, i had another

> > ultrasound at 25 weeks

> > and the radiologist said both of them were clubbed.

> > I had a regular

> > ultrasound, not the new 3D or 4D. Could the doctors

> > be wrong? I am

> > reading up on clubbed feet just to know what to

> > expect. They also

> > gave me an amnio to rule out any chromosonal

> > abnormality and it came

> > out negative she didn't have any downs or anything.

> > When i read

> > about clubbed feet they said there was a rare

> > desease called AMC, it

> > scares me and i was wondering if anyones children

> > have AMC and is

> > clubbed foot a characteristic of it? On the

> > ultrasound wouldn't they

> > of seen if she had AMC, she has moved around and

> > stuff. They have

> > told me that everything else with her looks great,

> > just her feet

> > looked turned in. Any advise would help me out

> > alot. I

> > automatically assume if they saw it on the

> > ultrasound that she does

> > have clubbed feet so i am looking into the ponsetti

> > method and other

> > pointers i can get on clothes, bathing and stuff

> > like that. I guess

> > this is a long road till recovery isn't it? Thanks

> > to all who reply.

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Thank you all so much for your responses. I feel very positive now

about my babies feet getting fixed properly. I want to do the

ponsetti method and dr.ponsetti gave me a doctor in Kansas City that

worked with him. It is a 3 hour drive each way but so worth it and i

found out today that she takes our medical insurance so now after my

baby girl is born we just have to get a referral from the

pediatrition to go to her so the insurance will pay. I am sure my

pediatrition will do it she is very nice. Keep the tips coming, and

positive thoughts they sure help alot.

Thank you

> > Hello,

> > I am 32 weeks pregnant and my doctor told me at 16

> > weeks that my

> > baby could have clubbed foot, i had another

> > ultrasound at 25 weeks

> > and the radiologist said both of them were clubbed.

> > I had a regular

> > ultrasound, not the new 3D or 4D. Could the doctors

> > be wrong? I am

> > reading up on clubbed feet just to know what to

> > expect. They also

> > gave me an amnio to rule out any chromosonal

> > abnormality and it came

> > out negative she didn't have any downs or anything.

> > When i read

> > about clubbed feet they said there was a rare

> > desease called AMC, it

> > scares me and i was wondering if anyones children

> > have AMC and is

> > clubbed foot a characteristic of it? On the

> > ultrasound wouldn't they

> > of seen if she had AMC, she has moved around and

> > stuff. They have

> > told me that everything else with her looks great,

> > just her feet

> > looked turned in. Any advise would help me out

> > alot. I

> > automatically assume if they saw it on the

> > ultrasound that she does

> > have clubbed feet so i am looking into the ponsetti

> > method and other

> > pointers i can get on clothes, bathing and stuff

> > like that. I guess

> > this is a long road till recovery isn't it? Thanks

> > to all who reply.

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Hello,

Welcome to the group! I have'nt read all of the responses to you yet, I

have'nt posted for a few days but your post caught my eye. I just wanted to

reassure you on the part of clubfoot being a long road. That was exactly

what I thought when it all started and I started reading about how clubfoot

was treated etc. We origionally started with the traditional method not

knowing there was indeed another non surgical way of correction. Even when

we finally found the Ponseti method and had it explained to us about how it

worked and how long the treatment was I was still thinking how long of a

road we probably still had ahead of us. To be honest, the part that worried

me the most was how it was going to work with the brace (shoes and brace), I

could'nt imagine it at all, but after going through the failed traditional

method and facing an upcoming surgery date, I decided I had to take the road

that was best for my daughters future. Thank god we did. My daughter is now

2 1/2 years old and has beautiful, functional, painfree feet. All the fears

and worries slowly faded with each and every visit to Dr. Ponseti's office.

Each cast (she had a total of 6) change was exciting as we saw such a change

in her feet. By the time we reached the brace stage we were actually excited

about that too. As it turned out, we found the brace stage to best the

easiest and best stage for our daughter. It depends on each child, but for

she has never minded them at all (except for the first two days of

adjustment) and since we have been down to only wearing them at night, it

truly is a breeze! Our closest friends even forget that she still wears the

brace unless they happen to be over at around 9pm and then say, " oh, she is

still wearing the brace! "

Having been through two different methods I have to say that I could only

recommend the Ponseti method to another parent, I truly believe it is the

best method not only for correction now, but for the future of these

children.

My daughter's pictures are in the " files " section of this board if you want

to take a peek. We found out at 19 weeks that she would have bilateral

clubfoot and at birth was diagnosed to be moderately severe.

Again, welcome to the board, I hope you find all the answers and support

that you are looking for, it's a great group of people here.

Holly and (born: Feb. 11,2000)

New to board , have some questions...

>Hello,

> I am 32 weeks pregnant and my doctor told me at 16 weeks that my

>baby could have clubbed foot, i had another ultrasound at 25 weeks

>and the radiologist said both of them were clubbed. I had a regular

>ultrasound, not the new 3D or 4D. Could the doctors be wrong? I am

>reading up on clubbed feet just to know what to expect. They also

>gave me an amnio to rule out any chromosonal abnormality and it came

>out negative she didn't have any downs or anything. When i read

>about clubbed feet they said there was a rare desease called AMC, it

>scares me and i was wondering if anyones children have AMC and is

>clubbed foot a characteristic of it? On the ultrasound wouldn't they

>of seen if she had AMC, she has moved around and stuff. They have

>told me that everything else with her looks great, just her feet

>looked turned in. Any advise would help me out alot. I

>automatically assume if they saw it on the ultrasound that she does

>have clubbed feet so i am looking into the ponsetti method and other

>pointers i can get on clothes, bathing and stuff like that. I guess

>this is a long road till recovery isn't it? Thanks to all who reply.

>

>

>

>

[Guest guest]

Hello,

Welcome to the group! I have'nt read all of the responses to you yet, I

have'nt posted for a few days but your post caught my eye. I just wanted to

reassure you on the part of clubfoot being a long road. That was exactly

what I thought when it all started and I started reading about how clubfoot

was treated etc. We origionally started with the traditional method not

knowing there was indeed another non surgical way of correction. Even when

we finally found the Ponseti method and had it explained to us about how it

worked and how long the treatment was I was still thinking how long of a

road we probably still had ahead of us. To be honest, the part that worried

me the most was how it was going to work with the brace (shoes and brace), I

could'nt imagine it at all, but after going through the failed traditional

method and facing an upcoming surgery date, I decided I had to take the road

that was best for my daughters future. Thank god we did. My daughter is now

2 1/2 years old and has beautiful, functional, painfree feet. All the fears

and worries slowly faded with each and every visit to Dr. Ponseti's office.

Each cast (she had a total of 6) change was exciting as we saw such a change

in her feet. By the time we reached the brace stage we were actually excited

about that too. As it turned out, we found the brace stage to best the

easiest and best stage for our daughter. It depends on each child, but for

she has never minded them at all (except for the first two days of

adjustment) and since we have been down to only wearing them at night, it

truly is a breeze! Our closest friends even forget that she still wears the

brace unless they happen to be over at around 9pm and then say, " oh, she is

still wearing the brace! "

Having been through two different methods I have to say that I could only

recommend the Ponseti method to another parent, I truly believe it is the

best method not only for correction now, but for the future of these

children.

My daughter's pictures are in the " files " section of this board if you want

to take a peek. We found out at 19 weeks that she would have bilateral

clubfoot and at birth was diagnosed to be moderately severe.

Again, welcome to the board, I hope you find all the answers and support

that you are looking for, it's a great group of people here.

Holly and (born: Feb. 11,2000)

New to board , have some questions...

>Hello,

> I am 32 weeks pregnant and my doctor told me at 16 weeks that my

>baby could have clubbed foot, i had another ultrasound at 25 weeks

>and the radiologist said both of them were clubbed. I had a regular

>ultrasound, not the new 3D or 4D. Could the doctors be wrong? I am

>reading up on clubbed feet just to know what to expect. They also

>gave me an amnio to rule out any chromosonal abnormality and it came

>out negative she didn't have any downs or anything. When i read

>about clubbed feet they said there was a rare desease called AMC, it

>scares me and i was wondering if anyones children have AMC and is

>clubbed foot a characteristic of it? On the ultrasound wouldn't they

>of seen if she had AMC, she has moved around and stuff. They have

>told me that everything else with her looks great, just her feet

>looked turned in. Any advise would help me out alot. I

>automatically assume if they saw it on the ultrasound that she does

>have clubbed feet so i am looking into the ponsetti method and other

>pointers i can get on clothes, bathing and stuff like that. I guess

>this is a long road till recovery isn't it? Thanks to all who reply.

>

>

>

>

[Guest guest]

Hello,

Welcome to the group! I have'nt read all of the responses to you yet, I

have'nt posted for a few days but your post caught my eye. I just wanted to

reassure you on the part of clubfoot being a long road. That was exactly

what I thought when it all started and I started reading about how clubfoot

was treated etc. We origionally started with the traditional method not

knowing there was indeed another non surgical way of correction. Even when

we finally found the Ponseti method and had it explained to us about how it

worked and how long the treatment was I was still thinking how long of a

road we probably still had ahead of us. To be honest, the part that worried

me the most was how it was going to work with the brace (shoes and brace), I

could'nt imagine it at all, but after going through the failed traditional

method and facing an upcoming surgery date, I decided I had to take the road

that was best for my daughters future. Thank god we did. My daughter is now

2 1/2 years old and has beautiful, functional, painfree feet. All the fears

and worries slowly faded with each and every visit to Dr. Ponseti's office.

Each cast (she had a total of 6) change was exciting as we saw such a change

in her feet. By the time we reached the brace stage we were actually excited

about that too. As it turned out, we found the brace stage to best the

easiest and best stage for our daughter. It depends on each child, but for

she has never minded them at all (except for the first two days of

adjustment) and since we have been down to only wearing them at night, it

truly is a breeze! Our closest friends even forget that she still wears the

brace unless they happen to be over at around 9pm and then say, " oh, she is

still wearing the brace! "

Having been through two different methods I have to say that I could only

recommend the Ponseti method to another parent, I truly believe it is the

best method not only for correction now, but for the future of these

children.

My daughter's pictures are in the " files " section of this board if you want

to take a peek. We found out at 19 weeks that she would have bilateral

clubfoot and at birth was diagnosed to be moderately severe.

Again, welcome to the board, I hope you find all the answers and support

that you are looking for, it's a great group of people here.

Holly and (born: Feb. 11,2000)

New to board , have some questions...

>Hello,

> I am 32 weeks pregnant and my doctor told me at 16 weeks that my

>baby could have clubbed foot, i had another ultrasound at 25 weeks

>and the radiologist said both of them were clubbed. I had a regular

>ultrasound, not the new 3D or 4D. Could the doctors be wrong? I am

>reading up on clubbed feet just to know what to expect. They also

>gave me an amnio to rule out any chromosonal abnormality and it came

>out negative she didn't have any downs or anything. When i read

>about clubbed feet they said there was a rare desease called AMC, it

>scares me and i was wondering if anyones children have AMC and is

>clubbed foot a characteristic of it? On the ultrasound wouldn't they

>of seen if she had AMC, she has moved around and stuff. They have

>told me that everything else with her looks great, just her feet

>looked turned in. Any advise would help me out alot. I

>automatically assume if they saw it on the ultrasound that she does

>have clubbed feet so i am looking into the ponsetti method and other

>pointers i can get on clothes, bathing and stuff like that. I guess

>this is a long road till recovery isn't it? Thanks to all who reply.

>

>

>

>

[Guest guest]

,

Hi, I live in Kansas City. My daughter went to Children's Mercy to be

treated. She saw Dr. Jarka. I am curious who you will be seeing in KC. I

hope that you can get all the insurance stuff taken care of. The treatment

may seem like a long road to recovery now, but it is worth it all in the

end.

and Anne (3-24-00)

> Re: New to board , have some

> questions...

>

> Joanne,

> Sorry to not of said my name. My name is and my husband is

> in the army we are stationed at Fort Riley, KS right now been here

> for 2 years. Dr. Ponsetti gave me a doctor in Kansas City which is

> like 3 hours from here one way that trained there and does his

> method. Now if i can get the army insurance to pay for it. That is

> going to be our biggest challange. Thanks so much for everyones

> reply it has helped me alot. I shouldn't be so upset about clubbed

> feet, and just pray nothing else is wrong with her. I know from the

> amnio what they test for on that everything was normal. Thanks again

> for everyones help.

>

>

>

>

>

> > Welcome to the group. My daughter was diagnosed with cf at the 20

> week

> > ultrasound. I immediately came to the web and found this group.

> It's been a

> > real blessing. As far as a misdiagnosis, it has happened. There

> have been

> > babies who were supposed to have cf, but had good flexibility and

> did not

> > need treatment.

> >

> > I also worried about other diseases. The specialist scared us to

> death. In

> > the end our daughter had bilateral cf(fairly severe according to

> Dr.

> > Ponseti). We flew to Iowa once a week for four weeks to see Dr.

> P. She was

> > corrected after 7 weeks in casts. Although CF is associated with

> other

> > diseases it seems from this board that most children have isolated

> CF. I

> > hope that puts your mind at ease a little.

> >

> > As far as advice there's a lot I could say but the short of it is...

> > We used cotton pants that stretched over the casts and socks on her

> feet.

> > (noone ever noticed she had casts, one of my biggest fears was

> comments about

> > the casts and what people would think)

> >

> > With the FAB we used clothes that snapped all the way up and down

> the leg

> > with no cuff. Dresses are also great for girls.

> >

> > I'd definately go to Dr. Ponseti again. Even though we had to pay

> for

> > flights 3 times it was worth it. The other times we flew with

> Angel Flights,

> > an organization that flys children needing medical treatment for

> free. It

> > seemed like a really hard decision at the time and a lot of effort,

> but not

> > nearly as much as 6 months in casts, surgery, scarring and later

> problems.

> >

> > You didn't say your name or where you are from?

> > Good luck with your pregnancy and birth.

> > HTH.

> > Joanne and Alaya 8-22-01

>

>

>

>

[Guest guest]

,

Hi, I live in Kansas City. My daughter went to Children's Mercy to be

treated. She saw Dr. Jarka. I am curious who you will be seeing in KC. I

hope that you can get all the insurance stuff taken care of. The treatment

may seem like a long road to recovery now, but it is worth it all in the

end.

and Anne (3-24-00)

> Re: New to board , have some

> questions...

>

> Joanne,

> Sorry to not of said my name. My name is and my husband is

> in the army we are stationed at Fort Riley, KS right now been here

> for 2 years. Dr. Ponsetti gave me a doctor in Kansas City which is

> like 3 hours from here one way that trained there and does his

> method. Now if i can get the army insurance to pay for it. That is

> going to be our biggest challange. Thanks so much for everyones

> reply it has helped me alot. I shouldn't be so upset about clubbed

> feet, and just pray nothing else is wrong with her. I know from the

> amnio what they test for on that everything was normal. Thanks again

> for everyones help.

>

>

>

>

>

> > Welcome to the group. My daughter was diagnosed with cf at the 20

> week

> > ultrasound. I immediately came to the web and found this group.

> It's been a

> > real blessing. As far as a misdiagnosis, it has happened. There

> have been

> > babies who were supposed to have cf, but had good flexibility and

> did not

> > need treatment.

> >

> > I also worried about other diseases. The specialist scared us to

> death. In

> > the end our daughter had bilateral cf(fairly severe according to

> Dr.

> > Ponseti). We flew to Iowa once a week for four weeks to see Dr.

> P. She was

> > corrected after 7 weeks in casts. Although CF is associated with

> other

> > diseases it seems from this board that most children have isolated

> CF. I

> > hope that puts your mind at ease a little.

> >

> > As far as advice there's a lot I could say but the short of it is...

> > We used cotton pants that stretched over the casts and socks on her

> feet.

> > (noone ever noticed she had casts, one of my biggest fears was

> comments about

> > the casts and what people would think)

> >

> > With the FAB we used clothes that snapped all the way up and down

> the leg

> > with no cuff. Dresses are also great for girls.

> >

> > I'd definately go to Dr. Ponseti again. Even though we had to pay

> for

> > flights 3 times it was worth it. The other times we flew with

> Angel Flights,

> > an organization that flys children needing medical treatment for

> free. It

> > seemed like a really hard decision at the time and a lot of effort,

> but not

> > nearly as much as 6 months in casts, surgery, scarring and later

> problems.

> >

> > You didn't say your name or where you are from?

> > Good luck with your pregnancy and birth.

> > HTH.

> > Joanne and Alaya 8-22-01

>

>

>

>

[Guest guest]

,

Hi, I live in Kansas City. My daughter went to Children's Mercy to be

treated. She saw Dr. Jarka. I am curious who you will be seeing in KC. I

hope that you can get all the insurance stuff taken care of. The treatment

may seem like a long road to recovery now, but it is worth it all in the

end.

and Anne (3-24-00)

> Re: New to board , have some

> questions...

>

> Joanne,

> Sorry to not of said my name. My name is and my husband is

> in the army we are stationed at Fort Riley, KS right now been here

> for 2 years. Dr. Ponsetti gave me a doctor in Kansas City which is

> like 3 hours from here one way that trained there and does his

> method. Now if i can get the army insurance to pay for it. That is

> going to be our biggest challange. Thanks so much for everyones

> reply it has helped me alot. I shouldn't be so upset about clubbed

> feet, and just pray nothing else is wrong with her. I know from the

> amnio what they test for on that everything was normal. Thanks again

> for everyones help.

>

>

>

>

>

> > Welcome to the group. My daughter was diagnosed with cf at the 20

> week

> > ultrasound. I immediately came to the web and found this group.

> It's been a

> > real blessing. As far as a misdiagnosis, it has happened. There

> have been

> > babies who were supposed to have cf, but had good flexibility and

> did not

> > need treatment.

> >

> > I also worried about other diseases. The specialist scared us to

> death. In

> > the end our daughter had bilateral cf(fairly severe according to

> Dr.

> > Ponseti). We flew to Iowa once a week for four weeks to see Dr.

> P. She was

> > corrected after 7 weeks in casts. Although CF is associated with

> other

> > diseases it seems from this board that most children have isolated

> CF. I

> > hope that puts your mind at ease a little.

> >

> > As far as advice there's a lot I could say but the short of it is...

> > We used cotton pants that stretched over the casts and socks on her

> feet.

> > (noone ever noticed she had casts, one of my biggest fears was

> comments about

> > the casts and what people would think)

> >

> > With the FAB we used clothes that snapped all the way up and down

> the leg

> > with no cuff. Dresses are also great for girls.

> >

> > I'd definately go to Dr. Ponseti again. Even though we had to pay

> for

> > flights 3 times it was worth it. The other times we flew with

> Angel Flights,

> > an organization that flys children needing medical treatment for

> free. It

> > seemed like a really hard decision at the time and a lot of effort,

> but not

> > nearly as much as 6 months in casts, surgery, scarring and later

> problems.

> >

> > You didn't say your name or where you are from?

> > Good luck with your pregnancy and birth.

> > HTH.

> > Joanne and Alaya 8-22-01

>

>

>

>