New Here

[Guest guest]

Hi ,

Sorry, I don't have many answers for you because my son's feet were

not atypical and we don't use Dr. Dobbs brace. We do however, use

Dr. Dobbs! My son is three-years-old so we are in the regular DBB

since it's just recently Dr. Dobbs developed this brace. He is a

great Dr. I must say. We live in western KY just outside of

Madisonville. What part of Tennessee do you live in?

Pam and (8-12-01)

>

>

> Hi, my name is . My son was born on May 24,2004 and

> has atypical bilateral clubfeet. We did not start with a Ponsetti

> doctor at first. We went through 2 doctors and 8 sets of casts and

> heel cord releases on each foot before discovering the Ponsetti

> method. We live in Tennessee and are now seeing Dr. Dobbs at the

> Children's Hospital in St. Louis. Our first trip there, Dr. Dobbs

> was so nice and caring and really seemed to know so much about

> clubfeet. Everything completely opposite of the previous doctor.

Dr.

> Dobbs says he can correct 's feet in 5 to 8 casts. We are

> currently on the 3rd set. 's feet are straigter and

definetly

> more flexible now, but his big toes always draw back in the casts.

> They are not slipping. They just draw back. Has anyone else had

this

> problem? I would really love to hear from anyone who has atypical

> clubfeet. I am trying to find out as much information as I can

> because I need to know in my mind that I am at the right place for

> treatment now. I have already wasted enough time and don't want to

> make any more mistakes. Also, is anyone using the new brace that

Dr.

> Dobbs has made? Does anyone know if it is approved by Dr. Ponsetti?

> Any information is much appreciated.

>

> Thank so much

>

>

[Guest guest]

Hi! My son has atypical bl as well and we had similar situations with

his big toes. They are slightly lower than the rest of his toes and

the one on his right foot is back even further. was in casts by

a non ponseti dr for his first 6 months and then surgery where he

stayed in those casts for a month and a half. Then we went to Iowa

and recieved castings for two more months and then another surgery by

dr. ponseti, well, actually it was dr. morcuende that performed the

surgery but it was under ponseti's care. We have just gotten our

mitchell shoes now, but his big toes are still pulled back quite a

bit. I am hoping that since he is finally out of casts after a year

of them, the standing and moving it will help it to form into a more

" normal " looking foot. But quite frankly I could care less as long as

he walks and runs and does it all pain free! It is no cause for

concern as long as the feet themselves are not slipping within the

casts. Hang in there. It sounds like is in good hands.

10-09-03 atypical bl cf dbb 23/7

>

>

> Hi, my name is . My son was born on May 24,2004 and

> has atypical bilateral clubfeet. We did not start with a Ponsetti

> doctor at first. We went through 2 doctors and 8 sets of casts and

> heel cord releases on each foot before discovering the Ponsetti

> method. We live in Tennessee and are now seeing Dr. Dobbs at the

> Children's Hospital in St. Louis. Our first trip there, Dr. Dobbs

> was so nice and caring and really seemed to know so much about

> clubfeet. Everything completely opposite of the previous doctor. Dr.

> Dobbs says he can correct 's feet in 5 to 8 casts. We are

> currently on the 3rd set. 's feet are straigter and definetly

> more flexible now, but his big toes always draw back in the casts.

> They are not slipping. They just draw back. Has anyone else had this

> problem? I would really love to hear from anyone who has atypical

> clubfeet. I am trying to find out as much information as I can

> because I need to know in my mind that I am at the right place for

> treatment now. I have already wasted enough time and don't want to

> make any more mistakes. Also, is anyone using the new brace that Dr.

> Dobbs has made? Does anyone know if it is approved by Dr. Ponsetti?

> Any information is much appreciated.

>

> Thank so much

>

>

[Guest guest]

Hi and welcome to the group. We see Dr.Dobbs at shriners in

St.Louis. My daughter doesn't have Atypical clubbed feet but there

are several parents on here that their children have Atypical

clubbed feet and see Dr.Dobbs. As for the new brace he made. He told

me about it but I haven't seen it personally. I know 's son

has the brace and he is doing great with it. I don't know if Dr.P

has seen it yet from Dr.Dobbs. I am sure someone else will help you

with this. Where are you from in TN? We are originally from TN. I

grew up in Dover and my husband grew up in Cumberland city. Our

family is in McEwen and Waverly. We go down there alot. We live in

n Illinois because we got transfered here for my husbands job.

Its about 2 hours away from the border of TN. You will like it at

this group. The people here are nice and very informative.

Best wishes

(mommy to Isabella 10-12-04 bilateral cf)

>

>

> Hi, my name is . My son was born on May 24, 2004

with

> bilateral atypical clubfeet. We did not start out with a Ponsetti

> doctor. We went through 2 doctors, 8 sets of casts, and heel cord

> releases on both feet before discovering the Ponsetti method. We

are

> currently seeing Dr. Dobbs at the Children's Hospital in St.

Louis.

> He is so nice and caring and seems to know so much about clubfeet.

> Everyting completely opposite of our previous doctor. Dr. Dobbs

said

> he could correct 's feet in 5 to 8 casts. We are currently

on

> our 3rd. set and 's feet are straighter and more flexible.

> The only thing is that his big toes keep drawing back in the

casts.

> I don't believe they are slipping because the other toes are

staying

> put. Has anyone else had this problem? I would really love to hear

> from others who have a child with atypical clubfeet. I am trying

to

> learn as much as I can because I want to know that I am at the

right

> place for treatment this time. I have already wasted so much

> precious time. Also does anyone know anything about Dr. Dobbs' new

> brace? Is it approved by Dr. Ponsetti? Any information is much

> appreciated.

>

>

> Thanks so much

>

[Guest guest]

Hi , my name is Mia and my daughter has BL Atypical CF. I don't know

anything about Dr Dobbs but I do know that Atypical is very specific on how to

treat. We too has gone through all of the casting an tenotomy here in New

Mexico by a Ponseti certified doctor. We were very fortunate that he did

everything correctly, but after the last cast came off after the tenotomy he was

stumped at her deep creases on the soles of her feet. He admitted that all he

knew to do was surgery when she turned 8 mos. That wasn't an option for us so I

got ahold of Dr Ponseti himself and he said he could fix her in a few more casts

specific for Atypical CF. So we ended up going out to Iowa and he applied 3

very specialized casts to her feet and the creases were virtually gone. Before

we left she was fitted in the shoes, which are the specialized sandals

Dr Ponseti and came up with. I personally would not use any other

shoe. They are wonderful and knowing that Dr P came

up with them specifically for the Atypical CF babies I could never imagine

using anything other. I kind of doubt that Dr Dobbs has the specialized

technique for the Atypical unless he has recently spent some time with Dr P

because Dr P has just perfected the casting himself over the last few years.

Maybe you should send some pics to Dr P and see what he has to say. Thats how

we received our information about Atypical CF to begin with. Good luck and keep

us posted.

Mia

Addisyn 6/24/04 BL Atypical CF in braces for 2wks so far!

michaelsmom524 michaelsmom524@...> wrote:

Hi, my name is . My son was born on May 24,2004 and

has atypical bilateral clubfeet. We did not start with a Ponsetti

doctor at first. We went through 2 doctors and 8 sets of casts and

heel cord releases on each foot before discovering the Ponsetti

method. We live in Tennessee and are now seeing Dr. Dobbs at the

Children's Hospital in St. Louis. Our first trip there, Dr. Dobbs

was so nice and caring and really seemed to know so much about

clubfeet. Everything completely opposite of the previous doctor. Dr.

Dobbs says he can correct 's feet in 5 to 8 casts. We are

currently on the 3rd set. 's feet are straigter and definetly

more flexible now, but his big toes always draw back in the casts.

They are not slipping. They just draw back. Has anyone else had this

problem? I would really love to hear from anyone who has atypical

clubfeet. I am trying to find out as much information as I can

because I need to know in my mind that I am at the right place for

treatment now. I have already wasted enough time and don't want to

make any more mistakes. Also, is anyone using the new brace that Dr.

Dobbs has made? Does anyone know if it is approved by Dr. Ponsetti?

Any information is much appreciated.

Thank so much

[Guest guest]

Hi , my name is Mia and my daughter has BL Atypical CF. I don't know

anything about Dr Dobbs but I do know that Atypical is very specific on how to

treat. We too has gone through all of the casting an tenotomy here in New

Mexico by a Ponseti certified doctor. We were very fortunate that he did

everything correctly, but after the last cast came off after the tenotomy he was

stumped at her deep creases on the soles of her feet. He admitted that all he

knew to do was surgery when she turned 8 mos. That wasn't an option for us so I

got ahold of Dr Ponseti himself and he said he could fix her in a few more casts

specific for Atypical CF. So we ended up going out to Iowa and he applied 3

very specialized casts to her feet and the creases were virtually gone. Before

we left she was fitted in the shoes, which are the specialized sandals

Dr Ponseti and came up with. I personally would not use any other

shoe. They are wonderful and knowing that Dr P came

up with them specifically for the Atypical CF babies I could never imagine

using anything other. I kind of doubt that Dr Dobbs has the specialized

technique for the Atypical unless he has recently spent some time with Dr P

because Dr P has just perfected the casting himself over the last few years.

Maybe you should send some pics to Dr P and see what he has to say. Thats how

we received our information about Atypical CF to begin with. Good luck and keep

us posted.

Mia

Addisyn 6/24/04 BL Atypical CF in braces for 2wks so far!

michaelsmom524 michaelsmom524@...> wrote:

Hi, my name is . My son was born on May 24,2004 and

has atypical bilateral clubfeet. We did not start with a Ponsetti

doctor at first. We went through 2 doctors and 8 sets of casts and

heel cord releases on each foot before discovering the Ponsetti

method. We live in Tennessee and are now seeing Dr. Dobbs at the

Children's Hospital in St. Louis. Our first trip there, Dr. Dobbs

was so nice and caring and really seemed to know so much about

clubfeet. Everything completely opposite of the previous doctor. Dr.

Dobbs says he can correct 's feet in 5 to 8 casts. We are

currently on the 3rd set. 's feet are straigter and definetly

more flexible now, but his big toes always draw back in the casts.

They are not slipping. They just draw back. Has anyone else had this

problem? I would really love to hear from anyone who has atypical

clubfeet. I am trying to find out as much information as I can

because I need to know in my mind that I am at the right place for

treatment now. I have already wasted enough time and don't want to

make any more mistakes. Also, is anyone using the new brace that Dr.

Dobbs has made? Does anyone know if it is approved by Dr. Ponsetti?

Any information is much appreciated.

Thank so much

[Guest guest]

Hello ,

My name is and my son Tyler has atypical bilateral cf as

well. We also went to a non ponsetti doctor for 18 months. Tyler

was not walking and had been through countless castings, tenotomies

and a heel cord lengthening. Finally I found this support group and

Dr. Dobbs. He is a wonderful caring doctor. Tyler has only had to

have 3 castings and another tenotomy with Dr. Dobbs. He is now in

the new " Dobbs Brace " . I think it is wonderful and seems to be

working quite well for Tyler. I thought that I had posted a picture

of it on this site. I will have to check if not I will post one.

The orthotists at Shriner's and Dr. Dobbs came up with this brace for

children with atypical cf that could not seem to stay in a regular

dbb. Tyler had 3 sets of the dennis brown braces and each one he

would slip out of several times and get blisters that once took a

month to heal. With these there has been no blisters and he has not

gotten out of them once. He is maintaining good correction as I have

a PT come in every other week to check his feet to make sure. His

dorsiflextion has improved from -5 with our non ponsetti dr. to 13

with Dr.Dobbs and the brace. 15 is normal. If you have any other

questions please feel free to ask. I am going to try to email

Dr.Dobbs to see if he has dicussed this brace with Dr. Ponsetti.

Dr.Dobbs studied under Dr. Ponsetti for 7 yrs (I think) and he looks

highly up to Dr. Ponsetti and the practice of the method so I am sure

that he has probably discussed it with him.

Tyler's mommy

bi lateral atypical cf 1/14/03

Dobbs brace 9/9/04 16/7

4/12/94 non cf

5/24/95 non cf

>

>

> Hi, my name is . My son was born on May 24,2004 and

> has atypical bilateral clubfeet. We did not start with a Ponsetti

> doctor at first. We went through 2 doctors and 8 sets of casts and

> heel cord releases on each foot before discovering the Ponsetti

> method. We live in Tennessee and are now seeing Dr. Dobbs at the

> Children's Hospital in St. Louis. Our first trip there, Dr. Dobbs

> was so nice and caring and really seemed to know so much about

> clubfeet. Everything completely opposite of the previous doctor.

Dr.

> Dobbs says he can correct 's feet in 5 to 8 casts. We are

> currently on the 3rd set. 's feet are straigter and

definetly

> more flexible now, but his big toes always draw back in the casts.

> They are not slipping. They just draw back. Has anyone else had

this

> problem? I would really love to hear from anyone who has atypical

> clubfeet. I am trying to find out as much information as I can

> because I need to know in my mind that I am at the right place for

> treatment now. I have already wasted enough time and don't want to

> make any more mistakes. Also, is anyone using the new brace that

Dr.

> Dobbs has made? Does anyone know if it is approved by Dr. Ponsetti?

> Any information is much appreciated.

>

> Thank so much

>

>

[Guest guest]

Hello ,

My name is and my son Tyler has atypical bilateral cf as

well. We also went to a non ponsetti doctor for 18 months. Tyler

was not walking and had been through countless castings, tenotomies

and a heel cord lengthening. Finally I found this support group and

Dr. Dobbs. He is a wonderful caring doctor. Tyler has only had to

have 3 castings and another tenotomy with Dr. Dobbs. He is now in

the new " Dobbs Brace " . I think it is wonderful and seems to be

working quite well for Tyler. I thought that I had posted a picture

of it on this site. I will have to check if not I will post one.

The orthotists at Shriner's and Dr. Dobbs came up with this brace for

children with atypical cf that could not seem to stay in a regular

dbb. Tyler had 3 sets of the dennis brown braces and each one he

would slip out of several times and get blisters that once took a

month to heal. With these there has been no blisters and he has not

gotten out of them once. He is maintaining good correction as I have

a PT come in every other week to check his feet to make sure. His

dorsiflextion has improved from -5 with our non ponsetti dr. to 13

with Dr.Dobbs and the brace. 15 is normal. If you have any other

questions please feel free to ask. I am going to try to email

Dr.Dobbs to see if he has dicussed this brace with Dr. Ponsetti.

Dr.Dobbs studied under Dr. Ponsetti for 7 yrs (I think) and he looks

highly up to Dr. Ponsetti and the practice of the method so I am sure

that he has probably discussed it with him.

Tyler's mommy

bi lateral atypical cf 1/14/03

Dobbs brace 9/9/04 16/7

4/12/94 non cf

5/24/95 non cf

>

>

> Hi, my name is . My son was born on May 24,2004 and

> has atypical bilateral clubfeet. We did not start with a Ponsetti

> doctor at first. We went through 2 doctors and 8 sets of casts and

> heel cord releases on each foot before discovering the Ponsetti

> method. We live in Tennessee and are now seeing Dr. Dobbs at the

> Children's Hospital in St. Louis. Our first trip there, Dr. Dobbs

> was so nice and caring and really seemed to know so much about

> clubfeet. Everything completely opposite of the previous doctor.

Dr.

> Dobbs says he can correct 's feet in 5 to 8 casts. We are

> currently on the 3rd set. 's feet are straigter and

definetly

> more flexible now, but his big toes always draw back in the casts.

> They are not slipping. They just draw back. Has anyone else had

this

> problem? I would really love to hear from anyone who has atypical

> clubfeet. I am trying to find out as much information as I can

> because I need to know in my mind that I am at the right place for

> treatment now. I have already wasted enough time and don't want to

> make any more mistakes. Also, is anyone using the new brace that

Dr.

> Dobbs has made? Does anyone know if it is approved by Dr. Ponsetti?

> Any information is much appreciated.

>

> Thank so much

>

>

[Guest guest]

Hi

It does get your alarm bells ringing. I'm sorry you will have to go through this

but you will realise your baby is just that bit more special than other babies.

But I am sure everything will be OK and it is only his foot affected. Although

they call it a birth defect when you see your baby you will forget about their

foot and just love the beautiful baby that you have. There is lots of great

advice on this site.

I too did searches on the web and it just got me more concerned as they say club

foot/feet has links to other problems. But only in a few cases. Sometimes too

much information can cause you more worry than needed. From what I have read on

this site most or all of our babies are doing what they should be for their age

etc.

My only regret is I didn't take any photos of his foot when he was born or in

the early plaster stages. I didn't do it and now wish I had. He is 7 months old

and his foot is in the normal position and we wear our dennis brown boots and

bar at night time only.

Good luck

Sharon

gore52@...> wrote:

Hello all, my name is and I am new to this group. I found

out last week that my son I am carrying (19 weeks) will have " club

foot " in his left foot and am petrified! I have been trying to do as

much research as possible to prepare myself. I had to get an

amniocentesis since they say there is a risk of him having other

defects, even though everything has been normal so far in all of my

routine tests. I wanted to know if there are any other defects that

he could possibly have? I have read that this birth defect is

correctable and that the majority of babies born with it are 100%

normal. Any help would be greatly appreciated!

[Guest guest]

,

Welcome to the group. Hang in there. I know that it is refered to as a birth

defect, but you will not feel that way when he gets here. It is just a mild

bump in the road compared to the whole scheme of things. Besides, I think that

my sons feet were and still are adorable, stinky but adorable.

I too found out at my 19week u/s that my son had both feet clubbed. My best

advice is to educate yourself on the methods of treatment and chose one that

best suits you. We all are big fans here of the Ponseti Method of treatment. I

will give you a quick breakdown of the treatment. Serial castings, with

intervals of 5 to 7 days between casts. Each cast is a little different, but

all have the knee bent at 90 degrees. Most children have a tendon release done

at the end of casting, then a 3 week cast is applied. Then on to shoes and a

bar to maintain correction. This is worn for 23 hours aday for 3 months, then

progressively lessend as the child hits milestones, crawling/walking. THen it

is worn nights only(14 hours) until somewhere between say 3 and 5 years old.

Where are you located? Once we know someone here maybe able to direct to a

doctor that practices the Ponseti Method.

Keep your chin up, I am sure that your Amnio will come back fine!

DM

gore52@...> wrote:

Hello all, my name is and I am new to this group. I found

out last week that my son I am carrying (19 weeks) will have " club

foot " in his left foot and am petrified! I have been trying to do as

much research as possible to prepare myself. I had to get an

amniocentesis since they say there is a risk of him having other

defects, even though everything has been normal so far in all of my

routine tests. I wanted to know if there are any other defects that

he could possibly have? I have read that this birth defect is

correctable and that the majority of babies born with it are 100%

normal. Any help would be greatly appreciated!

[Guest guest]

Hi ,

Welcome to the group! I agree - don't waste your pregnancy on a bunch of

worries, OK? Just enjoy the miracle that is happening inside your body and let

the rest take care of itself for now (because there's nothing you could do about

it yet anyway).

Club foot is a very minor " Birth Defect " . The chances of your baby having

other abnormalities is pretty slim in normal cases. It is also a very, very

correctable defect and this is the place to come for that!

All of us here will strongly urge you to find a very qualified Ponseti Method

doctor even if it means a great deal of travel. While cf is correctible, there

is a window of opportunity you have to work within for this correction so

there's little time to spare on less-than-adequate treatments. Many of us here

have gone " alternate routes " with treatment and have all regretted it heavily,

myself included.

Please post all your questions and concerns to us and we'll help all we can so

your baby can hit the ground running on two little straight feet with no

surgery involved!!! I don't know how many cf kids have passed through this

board but last I heard we had about 600 members (and I have two cf boys myself).

It's not a tragidy, I promise you. Relax, enjoy the pregnancy. Think positive,

too, because your little baby is feeling what you feel.

Good luck and hope to hear more from you here.

s.

Re: New Here

Hi

It does get your alarm bells ringing. I'm sorry you will have to go through this

but you will realise your baby is just that bit more special than other babies.

But I am sure everything will be OK and it is only his foot affected. Although

they call it a birth defect when you see your baby you will forget about their

foot and just love the beautiful baby that you have. There is lots of great

advice on this site.

I too did searches on the web and it just got me more concerned as they say club

foot/feet has links to other problems. But only in a few cases. Sometimes too

much information can cause you more worry than needed. From what I have read on

this site most or all of our babies are doing what they should be for their age

etc.

My only regret is I didn't take any photos of his foot when he was born or in

the early plaster stages. I didn't do it and now wish I had. He is 7 months old

and his foot is in the normal position and we wear our dennis brown boots and

bar at night time only.

Good luck

Sharon

gore52@...> wrote:

Hello all, my name is and I am new to this group. I found

out last week that my son I am carrying (19 weeks) will have " club

foot " in his left foot and am petrified! I have been trying to do as

much research as possible to prepare myself. I had to get an

amniocentesis since they say there is a risk of him having other

defects, even though everything has been normal so far in all of my

routine tests. I wanted to know if there are any other defects that

he could possibly have? I have read that this birth defect is

correctable and that the majority of babies born with it are 100%

normal. Any help would be greatly appreciated!

[Guest guest]

Hi ,

Congratulations on your pregnancy! And a little boy, thats great, I

have a girl so I would love to have a little guy next!

I know you are really worried right now, try, try not to worry,

chances are that LCF will be the only thing you will have to deal

with. And remember that it is totally fixable!

Our daughter was born with right club foot, it didn't show up on U/S

so we didn't have a chance to do any research on it...don't know if

that was a good/bad thing, just the way it happened. We kind of fell

into the Ponseti Method of treatment (non-surgical) and feel so very

very blessed that we did!

I am sure that your amnio will go fine! I know it sounds cliche but

do try to enjoy your pregnancy, you will miss it when it is over!

You will get lots of support and advise from the wonderful mommies

(and daddies) on this board, you have definately come to the right

place!

And when you finally look down at your new little baby's beautiful

face, his little crooked left foot will be the last thing on your

mind!!

& Grace

07-21-04 Unilateral RCF Browne brace 16 hrs/day

>

>

> Hello all, my name is and I am new to this group. I found

> out last week that my son I am carrying (19 weeks) will have " club

> foot " in his left foot and am petrified! I have been trying to do

as

> much research as possible to prepare myself. I had to get an

> amniocentesis since they say there is a risk of him having other

> defects, even though everything has been normal so far in all of my

> routine tests. I wanted to know if there are any other defects that

> he could possibly have? I have read that this birth defect is

> correctable and that the majority of babies born with it are 100%

> normal. Any help would be greatly appreciated!

>

>

[Guest guest]

I want to thank you all for the warm welcome!

I have been doing a lot of research this past week and am relieved to know that

this can be corrected. I also am wanting to do the Ponseti Method, I am in

ville Fl, I know that there are doctors in Orlando (which is 2 hrs away)

at the Nemours Clinic; but there is also a division of that clinic here so I

will be contacting them. I must say that I was devastated when I found out a

week ago today that my little baby boy () will be born with LCF but I am

feeling a lot better just to know that there is support out there and I am not

alone!!! Thank you so MUCH!!! The docs just have you paranoid for other defects

too and I was worried. I will not know the results of my Amnio until the end of

this week or next week. So, I am praying all will be normal. My niece does have

Spina Bifida and I did have a triple screening done which was negative and the

doc did say that all looks great in regard to him not having it so that was a

relief.

Again, thank you for the welcome and I am glad to have found you all!!!!!

Re: New Here

,

Welcome to the group. Hang in there. I know that it is refered to as a birth

defect, but you will not feel that way when he gets here. It is just a mild

bump in the road compared to the whole scheme of things. Besides, I think that

my sons feet were and still are adorable, stinky but adorable.

I too found out at my 19week u/s that my son had both feet clubbed. My best

advice is to educate yourself on the methods of treatment and chose one that

best suits you. We all are big fans here of the Ponseti Method of treatment. I

will give you a quick breakdown of the treatment. Serial castings, with

intervals of 5 to 7 days between casts. Each cast is a little different, but

all have the knee bent at 90 degrees. Most children have a tendon release done

at the end of casting, then a 3 week cast is applied. Then on to shoes and a

bar to maintain correction. This is worn for 23 hours aday for 3 months, then

progressively lessend as the child hits milestones, crawling/walking. THen it

is worn nights only(14 hours) until somewhere between say 3 and 5 years old.

Where are you located? Once we know someone here maybe able to direct to a

doctor that practices the Ponseti Method.

Keep your chin up, I am sure that your Amnio will come back fine!

DM

gore52@...> wrote:

Hello all, my name is and I am new to this group. I found

out last week that my son I am carrying (19 weeks) will have " club

foot " in his left foot and am petrified! I have been trying to do as

much research as possible to prepare myself. I had to get an

amniocentesis since they say there is a risk of him having other

defects, even though everything has been normal so far in all of my

routine tests. I wanted to know if there are any other defects that

he could possibly have? I have read that this birth defect is

correctable and that the majority of babies born with it are 100%

normal. Any help would be greatly appreciated!

[Guest guest]

,

Welcome to the group. my little one, Kelsey was born with a RCF that

was also detected on ultrasound. They also told us so many

possibilities of things that could be wrong with her. It got to the

point that everytime I went to the Doctor they were telling me something

else bad but it turned out that the CF and a minor kidney problem were

all that we had to deal with. Don't let the doctors worry you. I have

had way too many experiences with Doctors just giving you worse case

scenarios to cover their butts for malpractice purposes. Just try to

enjoy your pregnancy knowing that this Cf thing is fixable and you are

definitely not alone.

Jenni

Gore wrote:

>I want to thank you all for the warm welcome!

>I have been doing a lot of research this past week and am relieved to know that

this can be corrected. I also am wanting to do the Ponseti Method, I am in

ville Fl, I know that there are doctors in Orlando (which is 2 hrs away)

at the Nemours Clinic; but there is also a division of that clinic here so I

will be contacting them. I must say that I was devastated when I found out a

week ago today that my little baby boy () will be born with LCF but I am

feeling a lot better just to know that there is support out there and I am not

alone!!! Thank you so MUCH!!! The docs just have you paranoid for other defects

too and I was worried. I will not know the results of my Amnio until the end of

this week or next week. So, I am praying all will be normal. My niece does have

Spina Bifida and I did have a triple screening done which was negative and the

doc did say that all looks great in regard to him not having it so that was a

relief.

>Again, thank you for the welcome and I am glad to have found you all!!!!!

> Re: New Here

>

>

> ,

>

> Welcome to the group. Hang in there. I know that it is refered to as a

birth defect, but you will not feel that way when he gets here. It is just a

mild bump in the road compared to the whole scheme of things. Besides, I think

that my sons feet were and still are adorable, stinky but adorable.

>

> I too found out at my 19week u/s that my son had both feet clubbed. My best

advice is to educate yourself on the methods of treatment and chose one that

best suits you. We all are big fans here of the Ponseti Method of treatment. I

will give you a quick breakdown of the treatment. Serial castings, with

intervals of 5 to 7 days between casts. Each cast is a little different, but

all have the knee bent at 90 degrees. Most children have a tendon release done

at the end of casting, then a 3 week cast is applied. Then on to shoes and a

bar to maintain correction. This is worn for 23 hours aday for 3 months, then

progressively lessend as the child hits milestones, crawling/walking. THen it

is worn nights only(14 hours) until somewhere between say 3 and 5 years old.

>

> Where are you located? Once we know someone here maybe able to direct to a

doctor that practices the Ponseti Method.

>

> Keep your chin up, I am sure that your Amnio will come back fine!

>

> DM

>

> gore52@...> wrote:

>

>

> Hello all, my name is and I am new to this group. I found

> out last week that my son I am carrying (19 weeks) will have " club

> foot " in his left foot and am petrified! I have been trying to do as

> much research as possible to prepare myself. I had to get an

> amniocentesis since they say there is a risk of him having other

> defects, even though everything has been normal so far in all of my

> routine tests. I wanted to know if there are any other defects that

> he could possibly have? I have read that this birth defect is

> correctable and that the majority of babies born with it are 100%

> normal. Any help would be greatly appreciated!

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi ,

Welcome to the group! You will find alot of extremely helpful information

here. It will get you and your precious little baby through this without a

problem.

Mommy to (12-17-98) and

Christian (1-30-04) LCF - DBB 23/7

_____

From:

Sent: Sunday, December 12, 2004 5:24 PM

To: nosurgery4clubfoot

Subject: New Here

Hello all, my name is and I am new to this group. I found

out last week that my son I am carrying (19 weeks) will have " club

foot " in his left foot and am petrified! I have been trying to do as

much research as possible to prepare myself. I had to get an

amniocentesis since they say there is a risk of him having other

defects, even though everything has been normal so far in all of my

routine tests. I wanted to know if there are any other defects that

he could possibly have? I have read that this birth defect is

correctable and that the majority of babies born with it are 100%

normal. Any help would be greatly appreciated!

[Guest guest]

Hi ! I completely understand how you feel. When our son Ethan

was born in March we had no idea he was going to have clubfoot. It was

quite a shock!! Fortunately, we " fell " into the Ponseti method and now

he is a happy 9 month old with straight feet!! I am 16 weeks pregnant

with #3 and my OB is sending me to the hospital to have a level 2

ultrasound (whatever that is!) on January 3rd so that we will know

whether this baby has it or not and I am pretty apprehensive about the

whole thing. It doesn't really matter to me if this baby has it or not

now that I have been through it already but I completely understand

your worries!! Hang in there!!

Tina

Dylan 3-21-00

Ethan 3-06-04 bcf s 15/7

#3 EDD 5-25-05

[Guest guest]

A level 2 ultrasound is just like a regular ultrasound but much more in

depth with usually better equipment at the hospital. They take a lot of

measurements of body parts, organs etc. This is how Kelsey's clubfoot

was diagnosed because we were undergoing the level 2 ultrasound to look

for indicators of Down's syndrome. They found no Down's indicators but

did find the clubfoot. Enjoy the ultrasound. You get to see the baby

in more detail than on the level 1 ultrasounds, at least in my experience.

Jenni

dylansmommy2000 wrote:

>Hi ! I completely understand how you feel. When our son Ethan

>was born in March we had no idea he was going to have clubfoot. It was

>quite a shock!! Fortunately, we " fell " into the Ponseti method and now

>he is a happy 9 month old with straight feet!! I am 16 weeks pregnant

>with #3 and my OB is sending me to the hospital to have a level 2

>ultrasound (whatever that is!) on January 3rd so that we will know

>whether this baby has it or not and I am pretty apprehensive about the

>whole thing. It doesn't really matter to me if this baby has it or not

>now that I have been through it already but I completely understand

>your worries!! Hang in there!!

>

>Tina

>Dylan 3-21-00

>Ethan 3-06-04 bcf s 15/7

>#3 EDD 5-25-05

>

>

>

>

>

>

>

[Guest guest]

Thats great , you just hang around with us, we'll help you get through it

all, OK?

s.

Re: New Here

,

Welcome to the group. Hang in there. I know that it is refered to as a birth

defect, but you will not feel that way when he gets here. It is just a mild

bump in the road compared to the whole scheme of things. Besides, I think that

my sons feet were and still are adorable, stinky but adorable.

I too found out at my 19week u/s that my son had both feet clubbed. My best

advice is to educate yourself on the methods of treatment and chose one that

best suits you. We all are big fans here of the Ponseti Method of treatment. I

will give you a quick breakdown of the treatment. Serial castings, with

intervals of 5 to 7 days between casts. Each cast is a little different, but

all have the knee bent at 90 degrees. Most children have a tendon release done

at the end of casting, then a 3 week cast is applied. Then on to shoes and a

bar to maintain correction. This is worn for 23 hours aday for 3 months, then

progressively lessend as the child hits milestones, crawling/walking. THen it

is worn nights only(14 hours) until somewhere between say 3 and 5 years old.

Where are you located? Once we know someone here maybe able to direct to a

doctor that practices the Ponseti Method.

Keep your chin up, I am sure that your Amnio will come back fine!

DM

gore52@...> wrote:

Hello all, my name is and I am new to this group. I found

out last week that my son I am carrying (19 weeks) will have " club

foot " in his left foot and am petrified! I have been trying to do as

much research as possible to prepare myself. I had to get an

amniocentesis since they say there is a risk of him having other

defects, even though everything has been normal so far in all of my

routine tests. I wanted to know if there are any other defects that

he could possibly have? I have read that this birth defect is

correctable and that the majority of babies born with it are 100%

normal. Any help would be greatly appreciated!

[Guest guest]

Thanks for explaining that for me Jenni!!

Tina

[Guest guest]

I had about 6 inches of my colon removed and 2 inches of the rectum. No

colostomy. I was stage 2 and have had no chemo or radiation since no lymph nodes

were involved. Now they say Pet scan has showed on the colon right where the

staples are. I am not yet convinced it is cancer as last year the same showed

and with biopsy it was not cancer. This oncologist I am going to the 1st I went

to last year when they told me I had cancer again. He did not think I did and

had more tests done that came out negative. Hope the same happens this year but

he did tell me last year if it was cancer it would be surgery, chemo and

radiation.

Hil

Re: new here

Lora Ann, is your tumor too near the anus? My mom had a large rectal tumor

almost blocking her, they had to do surgery right away. They thought she would

have a colostomy but the surgeon was able to reconnect her, no colostomy!! Her

tumer was about a finger inside the rectum. ~~Dianna

ME peachfuzz_0121@...> wrote:Welcome Edie,

I too am fairly new to the group. I am sorry that we all have to meet because

of the reasons that we do. But being here has really helped me and it will you

too. There are alot of good listeners, advisors and most importantly friends

here. I am a 36 year old female, married with 2 girls, age 16 and 10. I was

daignosed with rectal cancer June 7. They want to treat me with chemo (5fu and

leucovorin) and radiation before surgery. After surgery they tell me I will be

left with a permanent colostomy. I should be starting my treatments soon. Hope

all goes well with your Mom. I will add you all to my prayers...............God

bless........Lora Ann

ediejanette ediejanette@...> wrote:

[Guest guest]

Edie,

I am sorry you have to be here. I was my mother's caregiver. Please

don't let that doctor get away with telling you nothing. My greatest

regret is that I didn't push the doctors harder. It might have have

changed the outcome. I accepted what the docs said all too easily.

You have to fight every step of the way!

Thoughts and prayers are with you.

Sharon

> Hi,

>

> I have never posted here before. I am a caregiver to my mother. She

> had a colon resection in 1/04, then recurrence this year. This time

> she had a colostomy. She had 28 radiation treatments and no chemo. We

> don't know the stage. We've never had cancer in our family before, so

> don't know much about it. Everything I know, I learned from this

> group. I hope to continue learning here, because the doctor doesn't

> tell us anything. I have been reading your posts for awhile and have

> you in my prayers each night. Thanks.

>

> Edie

[Guest guest]

I'm a stage 1 survivor (Dx'd at age 39). I had the radiation/xeloda

combination after surgery. It's not fun, but I tolerated it well. I

did not miss a day of work but I was tired all the time. I wound up

taking naps when I got home, or sometimes I took a long lunch and

napped a bit.

The radiation folks will tell you to drink a lot of water or fluids.

That will be important since it will make a big difference in how you

feel. Many on this board talk about the importance of hydration on

how well you will tolerate chemo and radiation.

Radiation/chemo will cause diarrhea. Immodium stopped it for me.

You may want to ask the Dr. about what to use and how to dose it. I

found out later that you can take a " maintainance " dose every day to

try and keep the diarrhea away. You will have to play with the

doseage to find a happy medium, but then things will change over

time.

Keep some ointment handy for a sore bottom. There are few things as

miserable as diarrhea with a chapped bottom. It can hurt so bad that

you'll cry and moan. Prevent this from happening!

Watch for radiation burns. The skin will get " tanned " over time. It

can get irritated and painful, especially if they're hitting the

crack. There are lotions to use for it.

Be prepared to lose your modesty when the radiation folks do the

simulation and mark the heiney for the field definitions they want.

I layed on a table, unable to move for more than 30 minutes with a

parade of folks coming in and out and checking out my posterior,

drawing on it with markers, etc... It didn't really bother me that

much but still, it's weird.

I'm sure there's more to say but I'll send this on so it gets

posted. Remember that this beast can be beat. A positive attitude

can work wonders on the people around you. People want to help

agreeable people and they tend to try harder for someone they like.

Miracles happen!

Cliff H.

>

> My husband (active young 65) was diagnosed with Colon Cancer last

month. We

> finally, after a series of delays, saw the surgeon yesterday. He

said the

> cancer is a late state III, in the distal portion of the colon

extending

> into the rectum almost to the outer opening. He is setting Bill up

with

> chemo and radiation then will do surgery, then follow with chemo and

> radiation. So it sounds like the actual surgery is about six weeks

away.

> We know that he will have a permanent colostomy also. I would like

to hear

> from any of you who have had the chemo/rad tx and how it affects you

> physically. I know that everyone reacts differently but I am

trying to

> prepare myself for what might be needed to help or take care of him.

> I was a nurse but last worked 15 years ago and never in the

oncology dept.

> I realize this is a broad and sweeping request. I have researched

over the

> net but will appreciate any advice, information, or whatever you

might

> offer. He says he is still in a stage of denial, doesn't feel

sick, etc.,

> just is in the bathroom 10-12 times a day. His appetite is the

same as

> always and he really thinks he will continue to go to the office

daily and

> also carry on with the chores here on our acreage. I don't think

so! I

> don't plan on making him a dependent invalid just want to be

prepared as we

> live some way from town and I would rather not run back and forth

> needlessly. How was it from some of you who have been there, done

that?

> Thanks....................

> Jan

[Guest guest]

I'm a stage 1 survivor (Dx'd at age 39). I had the radiation/xeloda

combination after surgery. It's not fun, but I tolerated it well. I

did not miss a day of work but I was tired all the time. I wound up

taking naps when I got home, or sometimes I took a long lunch and

napped a bit.

The radiation folks will tell you to drink a lot of water or fluids.

That will be important since it will make a big difference in how you

feel. Many on this board talk about the importance of hydration on

how well you will tolerate chemo and radiation.

Radiation/chemo will cause diarrhea. Immodium stopped it for me.

You may want to ask the Dr. about what to use and how to dose it. I

found out later that you can take a " maintainance " dose every day to

try and keep the diarrhea away. You will have to play with the

doseage to find a happy medium, but then things will change over

time.

Keep some ointment handy for a sore bottom. There are few things as

miserable as diarrhea with a chapped bottom. It can hurt so bad that

you'll cry and moan. Prevent this from happening!

Watch for radiation burns. The skin will get " tanned " over time. It

can get irritated and painful, especially if they're hitting the

crack. There are lotions to use for it.

Be prepared to lose your modesty when the radiation folks do the

simulation and mark the heiney for the field definitions they want.

I layed on a table, unable to move for more than 30 minutes with a

parade of folks coming in and out and checking out my posterior,

drawing on it with markers, etc... It didn't really bother me that

much but still, it's weird.

I'm sure there's more to say but I'll send this on so it gets

posted. Remember that this beast can be beat. A positive attitude

can work wonders on the people around you. People want to help

agreeable people and they tend to try harder for someone they like.

Miracles happen!

Cliff H.

>

> My husband (active young 65) was diagnosed with Colon Cancer last

month. We

> finally, after a series of delays, saw the surgeon yesterday. He

said the

> cancer is a late state III, in the distal portion of the colon

extending

> into the rectum almost to the outer opening. He is setting Bill up

with

> chemo and radiation then will do surgery, then follow with chemo and

> radiation. So it sounds like the actual surgery is about six weeks

away.

> We know that he will have a permanent colostomy also. I would like

to hear

> from any of you who have had the chemo/rad tx and how it affects you

> physically. I know that everyone reacts differently but I am

trying to

> prepare myself for what might be needed to help or take care of him.

> I was a nurse but last worked 15 years ago and never in the

oncology dept.

> I realize this is a broad and sweeping request. I have researched

over the

> net but will appreciate any advice, information, or whatever you

might

> offer. He says he is still in a stage of denial, doesn't feel

sick, etc.,

> just is in the bathroom 10-12 times a day. His appetite is the

same as

> always and he really thinks he will continue to go to the office

daily and

> also carry on with the chores here on our acreage. I don't think

so! I

> don't plan on making him a dependent invalid just want to be

prepared as we

> live some way from town and I would rather not run back and forth

> needlessly. How was it from some of you who have been there, done

that?

> Thanks....................

> Jan

[Guest guest]

Thank you for the information. This is the kind of things I am looking for

answers for, the nutrition needed, foods well tolerated, hydration issues,

any no-nos, etc. I write down questions but the doctors cannot answer from

a personal level unless they have also been patients. I have made a file

and am keeping replies and info from the net for future reference.

I am sure I'll be back with a lot of questions. I know it is too soon but

am also preparing questions re the colostomy which he will have soon. I

vaguely remember hearing no carbonated beverages, certain foods to avoid,

etc. Of course this was all years back so maybe not even be important now.

Jan

Re: new here

> I'm a stage 1 survivor (Dx'd at age 39). I had the radiation/xeloda

> combination after surgery. It's not fun, but I tolerated it well. I

> did not miss a day of work but I was tired all the time. I wound up

> taking naps when I got home, or sometimes I took a long lunch and

> napped a bit.

[Guest guest]

Thank you for the information. This is the kind of things I am looking for

answers for, the nutrition needed, foods well tolerated, hydration issues,

any no-nos, etc. I write down questions but the doctors cannot answer from

a personal level unless they have also been patients. I have made a file

and am keeping replies and info from the net for future reference.

I am sure I'll be back with a lot of questions. I know it is too soon but

am also preparing questions re the colostomy which he will have soon. I

vaguely remember hearing no carbonated beverages, certain foods to avoid,

etc. Of course this was all years back so maybe not even be important now.

Jan

Re: new here

> I'm a stage 1 survivor (Dx'd at age 39). I had the radiation/xeloda

> combination after surgery. It's not fun, but I tolerated it well. I

> did not miss a day of work but I was tired all the time. I wound up

> taking naps when I got home, or sometimes I took a long lunch and

> napped a bit.

[Guest guest]

Thank you for the information. This is the kind of things I am looking for

answers for, the nutrition needed, foods well tolerated, hydration issues,

any no-nos, etc. I write down questions but the doctors cannot answer from

a personal level unless they have also been patients. I have made a file

and am keeping replies and info from the net for future reference.

I am sure I'll be back with a lot of questions. I know it is too soon but

am also preparing questions re the colostomy which he will have soon. I

vaguely remember hearing no carbonated beverages, certain foods to avoid,

etc. Of course this was all years back so maybe not even be important now.

Jan

Re: new here

> I'm a stage 1 survivor (Dx'd at age 39). I had the radiation/xeloda

> combination after surgery. It's not fun, but I tolerated it well. I

> did not miss a day of work but I was tired all the time. I wound up

> taking naps when I got home, or sometimes I took a long lunch and

> napped a bit.