Hello All - Support Needed

[Guest guest]

Hello All - I'm so happy to see there is a group to come to for

support on a topic that before Sept. 30th I had no idea even existed.

My son was born Sept. 30th with both feet noticably turned inward -

later to be found out to be clubfeet. His mother and I were and still

are in shock as his older brother(17 months old) had no problems what

so ever - and we have both been hearing lots of different opinions but

have no clue what to expect. He was immediately placed in casts - and

they are using the Ponseti method - what seems to be the way to go.

Our worries are that the correct people are doing this treatment- and

how do we know if it isn't - we don't want to misuse this critical

time. We are in Albany, NY - and are quite confused by the whole

thing. I look forward to being a part of your group and look forward

to getting and providing as much support as possible.

[Guest guest]

Hello All - I'm so happy to see there is a group to come to for

support on a topic that before Sept. 30th I had no idea even existed.

My son was born Sept. 30th with both feet noticably turned inward -

later to be found out to be clubfeet. His mother and I were and still

are in shock as his older brother(17 months old) had no problems what

so ever - and we have both been hearing lots of different opinions but

have no clue what to expect. He was immediately placed in casts - and

they are using the Ponseti method - what seems to be the way to go.

Our worries are that the correct people are doing this treatment- and

how do we know if it isn't - we don't want to misuse this critical

time. We are in Albany, NY - and are quite confused by the whole

thing. I look forward to being a part of your group and look forward

to getting and providing as much support as possible.

[Guest guest]

,

First, congratulations on the birth of your son! And welcome to the

group. You will find a lot of information regarding the Ponseti

method, including a list of doctors qualified in the method at the

University of Iowa (where dr. Ponseti practices) website.

http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html

You can also find a list of questions to ask your son's doctor to help

you find out if he/she is practicing the method according to protocol

here: http://members.tripod.com/ponseti_links-ivil/id13.html

That website has links to tons of information. Also, I don't know if

you are reading messages here on the Yahoo website for this group but

if you go to the files and links section you can find a wealth of

information.

Hope this is helpful to you as you begin your journey, the parents

here on this site are very helpful so feel free to ask any questions

you may have along the way. Glad to have you here!

Jenna (4/7/01) & (9/25/04, RCF, Dobbs brace, 16 hrs/day)

>

> Hello All - I'm so happy to see there is a group to come to for

> support on a topic that before Sept. 30th I had no idea even existed.

> My son was born Sept. 30th with both feet noticably turned inward -

> later to be found out to be clubfeet. His mother and I were and still

> are in shock as his older brother(17 months old) had no problems what

> so ever - and we have both been hearing lots of different opinions but

> have no clue what to expect. He was immediately placed in casts - and

> they are using the Ponseti method - what seems to be the way to go.

> Our worries are that the correct people are doing this treatment- and

> how do we know if it isn't - we don't want to misuse this critical

> time. We are in Albany, NY - and are quite confused by the whole

> thing. I look forward to being a part of your group and look forward

> to getting and providing as much support as possible.

>

>

>

[Guest guest]

-

Welcome to the group! Your family was in the same boat as my family

was just a little over a year ago. I can understand what you are

going through-our with his bilateral clubfeet was quite a

surprise for us. Below is a link that I believe to be invaluable:

http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html

Also-if you go to the links section-there are a couple of other

invaluable links-one is a collection of clubfeet resources that

put together all the way from South Africa-she and her son

came to Iowa for treatment!

http://www.clubfoot.co.za/

The other resource is the global health guidebook on the Ponseti

method. The above link gives you the chance to find a " certified "

doctor. Our son does not see an " official " Ponseti doctor but being

dilligent and thorough, he has had great treatment so far. Dr

Ponseti offered my sons doctors a clinic for 1 week and therefore

they were trained/just not certified yet. Please let us know how

else we can help?!!

Thanks,

Kathleen

mom to 8/28/04 bcf fab 12/7

>

> Hello All - I'm so happy to see there is a group to come to for

> support on a topic that before Sept. 30th I had no idea even

existed.

> My son was born Sept. 30th with both feet noticably turned inward -

> later to be found out to be clubfeet. His mother and I were and

still

> are in shock as his older brother(17 months old) had no problems

what

> so ever - and we have both been hearing lots of different opinions

but

> have no clue what to expect. He was immediately placed in casts -

and

> they are using the Ponseti method - what seems to be the way to

go.

> Our worries are that the correct people are doing this treatment-

and

> how do we know if it isn't - we don't want to misuse this critical

> time. We are in Albany, NY - and are quite confused by the whole

> thing. I look forward to being a part of your group and look

forward

> to getting and providing as much support as possible.

>

>

>

[Guest guest]

,

First, congratulations on the birth of your son! And welcome to the

group. You will find a lot of information regarding the Ponseti

method, including a list of doctors qualified in the method at the

University of Iowa (where dr. Ponseti practices) website.

http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html

You can also find a list of questions to ask your son's doctor to help

you find out if he/she is practicing the method according to protocol

here: http://members.tripod.com/ponseti_links-ivil/id13.html

That website has links to tons of information. Also, I don't know if

you are reading messages here on the Yahoo website for this group but

if you go to the files and links section you can find a wealth of

information.

Hope this is helpful to you as you begin your journey, the parents

here on this site are very helpful so feel free to ask any questions

you may have along the way. Glad to have you here!

Jenna (4/7/01) & (9/25/04, RCF, Dobbs brace, 16 hrs/day)

>

> Hello All - I'm so happy to see there is a group to come to for

> support on a topic that before Sept. 30th I had no idea even existed.

> My son was born Sept. 30th with both feet noticably turned inward -

> later to be found out to be clubfeet. His mother and I were and still

> are in shock as his older brother(17 months old) had no problems what

> so ever - and we have both been hearing lots of different opinions but

> have no clue what to expect. He was immediately placed in casts - and

> they are using the Ponseti method - what seems to be the way to go.

> Our worries are that the correct people are doing this treatment- and

> how do we know if it isn't - we don't want to misuse this critical

> time. We are in Albany, NY - and are quite confused by the whole

> thing. I look forward to being a part of your group and look forward

> to getting and providing as much support as possible.

>

>

>

[Guest guest]

-

Welcome to the group! Your family was in the same boat as my family

was just a little over a year ago. I can understand what you are

going through-our with his bilateral clubfeet was quite a

surprise for us. Below is a link that I believe to be invaluable:

http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html

Also-if you go to the links section-there are a couple of other

invaluable links-one is a collection of clubfeet resources that

put together all the way from South Africa-she and her son

came to Iowa for treatment!

http://www.clubfoot.co.za/

The other resource is the global health guidebook on the Ponseti

method. The above link gives you the chance to find a " certified "

doctor. Our son does not see an " official " Ponseti doctor but being

dilligent and thorough, he has had great treatment so far. Dr

Ponseti offered my sons doctors a clinic for 1 week and therefore

they were trained/just not certified yet. Please let us know how

else we can help?!!

Thanks,

Kathleen

mom to 8/28/04 bcf fab 12/7

>

> Hello All - I'm so happy to see there is a group to come to for

> support on a topic that before Sept. 30th I had no idea even

existed.

> My son was born Sept. 30th with both feet noticably turned inward -

> later to be found out to be clubfeet. His mother and I were and

still

> are in shock as his older brother(17 months old) had no problems

what

> so ever - and we have both been hearing lots of different opinions

but

> have no clue what to expect. He was immediately placed in casts -

and

> they are using the Ponseti method - what seems to be the way to

go.

> Our worries are that the correct people are doing this treatment-

and

> how do we know if it isn't - we don't want to misuse this critical

> time. We are in Albany, NY - and are quite confused by the whole

> thing. I look forward to being a part of your group and look

forward

> to getting and providing as much support as possible.

>

>

>

[Guest guest]

,

Congratulations on your new baby!! I know what it feels like to be

totally shocked in the delivery room. I have three sons with normal

feet. Last November my daughter was born with severe bilateral

clubfeet. We live in Owego, New York. The only certified Ponseti

doctors are in NYC, according to Dr. Ponseti's website. With that

said, there are other doctors in NY who are trained by Dr. Ponseti,

but for whatever reason are not certified. All of the advice listed

before is great. Looking into all of those sites will answer your

many questions.

My daughter sees a doctor in Syracuse and he is wonderful. We found

him when had a relapse at 4.5 months old. I was concerned

after reading information on this site that he might not be trained

properly, but at her last visit he began our discussion with... " the

last time I was with Dr. Ponseti he said... " .

I do question things and get nervous after I hear other people's

stories, but I have no reason to as my daughter is doing

beautifully. I would be happy to give you this doctor's name if you

cannot find a doctor that you are sure will give your baby adequate

care in the Albany area.

On a side note...I have a friend who has 13 children, all

singletons. Her fifth child was born with a clubfoot. The next 8

were all born with normal feet. So you just never know. Anything can

happen. Good luck to you!

Donna

mother to 6/5/92, 7/19/99, Jakob 12/06/01, and

BLCF 11/01/04.

> >

> > Hello All - I'm so happy to see there is a group to come to for

> > support on a topic that before Sept. 30th I had no idea even

existed.

> > My son was born Sept. 30th with both feet noticably turned

inward -

> > later to be found out to be clubfeet. His mother and I were and

still

> > are in shock as his older brother(17 months old) had no problems

what

> > so ever - and we have both been hearing lots of different

opinions but

> > have no clue what to expect. He was immediately placed in

casts - and

> > they are using the Ponseti method - what seems to be the way to

go.

> > Our worries are that the correct people are doing this treatment-

and

> > how do we know if it isn't - we don't want to misuse this

critical

> > time. We are in Albany, NY - and are quite confused by the

whole

> > thing. I look forward to being a part of your group and look

forward

> > to getting and providing as much support as possible.

> >

> >

> >

>

[Guest guest]

,

Congratulations on your new baby!! I know what it feels like to be

totally shocked in the delivery room. I have three sons with normal

feet. Last November my daughter was born with severe bilateral

clubfeet. We live in Owego, New York. The only certified Ponseti

doctors are in NYC, according to Dr. Ponseti's website. With that

said, there are other doctors in NY who are trained by Dr. Ponseti,

but for whatever reason are not certified. All of the advice listed

before is great. Looking into all of those sites will answer your

many questions.

My daughter sees a doctor in Syracuse and he is wonderful. We found

him when had a relapse at 4.5 months old. I was concerned

after reading information on this site that he might not be trained

properly, but at her last visit he began our discussion with... " the

last time I was with Dr. Ponseti he said... " .

I do question things and get nervous after I hear other people's

stories, but I have no reason to as my daughter is doing

beautifully. I would be happy to give you this doctor's name if you

cannot find a doctor that you are sure will give your baby adequate

care in the Albany area.

On a side note...I have a friend who has 13 children, all

singletons. Her fifth child was born with a clubfoot. The next 8

were all born with normal feet. So you just never know. Anything can

happen. Good luck to you!

Donna

mother to 6/5/92, 7/19/99, Jakob 12/06/01, and

BLCF 11/01/04.

> >

> > Hello All - I'm so happy to see there is a group to come to for

> > support on a topic that before Sept. 30th I had no idea even

existed.

> > My son was born Sept. 30th with both feet noticably turned

inward -

> > later to be found out to be clubfeet. His mother and I were and

still

> > are in shock as his older brother(17 months old) had no problems

what

> > so ever - and we have both been hearing lots of different

opinions but

> > have no clue what to expect. He was immediately placed in

casts - and

> > they are using the Ponseti method - what seems to be the way to

go.

> > Our worries are that the correct people are doing this treatment-

and

> > how do we know if it isn't - we don't want to misuse this

critical

> > time. We are in Albany, NY - and are quite confused by the

whole

> > thing. I look forward to being a part of your group and look

forward

> > to getting and providing as much support as possible.

> >

> >

> >

>

[Guest guest]

Congratulations on the birth of your new son ! How are things going, other than

the cf ?

I have a grandbaby due the 27th of Oct, who apprears to have cf.

DeeDee

California

" gnggreen31 " wrote:

> Hello All - I'm so happy to see there is a group to come to for

>support on a topic that before Sept. 30th I had no idea even existed.nbsp;

>My son was born Sept. 30th with both feet noticably turned inward -

>later to be found out to be clubfeet. His mother and I were and still

>are in shock as his older brother(17 months old) had no problems what

>so ever - and we have both been hearing lots of different opinions but

>have no clue what to expect.nbsp; He was immediately placed in casts - and

>they are using the Ponseti method - what seems to be the way to go.

>Our worries are that the correct people are doing this treatment- and

>how do we know if it isn't - we don't want to misuse this critical

>time.nbsp; We are in Albany, NY - and are quite confused by the whole

>thing.nbsp; I look forward to being a part of your group and look forward

>to getting and providing as much support as possible.

>

>

>

>

>

>

>

>  

>

>

[Guest guest]

Congratulations on the birth of your new son ! How are things going, other than

the cf ?

I have a grandbaby due the 27th of Oct, who apprears to have cf.

DeeDee

California

" gnggreen31 " wrote:

> Hello All - I'm so happy to see there is a group to come to for

>support on a topic that before Sept. 30th I had no idea even existed.nbsp;

>My son was born Sept. 30th with both feet noticably turned inward -

>later to be found out to be clubfeet. His mother and I were and still

>are in shock as his older brother(17 months old) had no problems what

>so ever - and we have both been hearing lots of different opinions but

>have no clue what to expect.nbsp; He was immediately placed in casts - and

>they are using the Ponseti method - what seems to be the way to go.

>Our worries are that the correct people are doing this treatment- and

>how do we know if it isn't - we don't want to misuse this critical

>time.nbsp; We are in Albany, NY - and are quite confused by the whole

>thing.nbsp; I look forward to being a part of your group and look forward

>to getting and providing as much support as possible.

>

>

>

>

>

>

>

>  

>

>

[Guest guest]

Thanks everyone so much for your support and info - it has been a great help

to my wife and I. We go tomorrow to see the Ortho in Albany armed with info

and ?'s. We are now concerned cause we see a dimple at the base of his spine,

which the pediatrician says she not concerned with " at this point " - but still

worries us. If we don't feel comfortable with the answers tomorrow we will be

heading to Schreiners in Springfield, Mass or the Children's Hospital in

Boston, or now with new info, Syracuse(Thanks Donna!!!).

Father to 5/3/04, Austin 9/30/05 BLCF and god's healing hand!

[Guest guest]

Thanks everyone so much for your support and info - it has been a great help

to my wife and I. We go tomorrow to see the Ortho in Albany armed with info

and ?'s. We are now concerned cause we see a dimple at the base of his spine,

which the pediatrician says she not concerned with " at this point " - but still

worries us. If we don't feel comfortable with the answers tomorrow we will be

heading to Schreiners in Springfield, Mass or the Children's Hospital in

Boston, or now with new info, Syracuse(Thanks Donna!!!).

Father to 5/3/04, Austin 9/30/05 BLCF and god's healing hand!

[Guest guest]

Good luck !

Keep us posted!

Kathleen

mom to bcf fab 12/7

>

> Thanks everyone so much for your support and info - it has been a

great help

> to my wife and I. We go tomorrow to see the Ortho in Albany armed

with info

> and ?'s. We are now concerned cause we see a dimple at the base

of his spine,

> which the pediatrician says she not concerned with " at this point " -

but still

> worries us. If we don't feel comfortable with the answers

tomorrow we will be

> heading to Schreiners in Springfield, Mass or the Children's

Hospital in

> Boston, or now with new info, Syracuse(Thanks Donna!!!).

>

>

> Father to 5/3/04, Austin 9/30/05 BLCF and god's healing

hand!

>

>

>

[Guest guest]

Good luck !

Keep us posted!

Kathleen

mom to bcf fab 12/7

>

> Thanks everyone so much for your support and info - it has been a

great help

> to my wife and I. We go tomorrow to see the Ortho in Albany armed

with info

> and ?'s. We are now concerned cause we see a dimple at the base

of his spine,

> which the pediatrician says she not concerned with " at this point " -

but still

> worries us. If we don't feel comfortable with the answers

tomorrow we will be

> heading to Schreiners in Springfield, Mass or the Children's

Hospital in

> Boston, or now with new info, Syracuse(Thanks Donna!!!).

>

>

> Father to 5/3/04, Austin 9/30/05 BLCF and god's healing

hand!

>

>

>

[Guest guest]

I hope others have responded to you - I'm several days behind on mail here

but I want to welcome you to the group. I hope indeed your child is seeing a

real Ponseti doctor. Others here from your area can clarify that for you

probably with first hand experience that I lack living in Oklahoma as I do. My

advise though is of a different variety - that you and your wife don't beat

yourselves up over the deformity. You didn't cause it. You could not have

prevented it. There wasn't some magic pill she could have taken. It was the

Tylenol she took one night for a head ache or the day she helped you paint the

new bedroom or the hot tub you sat in or anything like that....it just happens

and we don't know why yet. there was no history of CF in my family until I

gave birth to two boys in a row with it. Remind yourself God Doesn't Make

Junk and embrace those little feet and embrace the knowledge you were trusted

with this child.

Most of all, do your home work, and keep doing your home work, keep asking until

you find the answers that satisfy you. Don't let doctors bully you with their

egos or sense of superiority. Sadly we're finding on this group many so-called

Ponseti doctors who are deciding to re-invent the wheel ... changing the method.

If you ever find yourself in this boat, get out before it sinks.

shawnee

Hello All - Support Needed

Hello All - I'm so happy to see there is a group to come to for

support on a topic that before Sept. 30th I had no idea even existed.

My son was born Sept. 30th with both feet noticably turned inward -

later to be found out to be clubfeet. His mother and I were and still

are in shock as his older brother(17 months old) had no problems what

so ever - and we have both been hearing lots of different opinions but

have no clue what to expect. He was immediately placed in casts - and

they are using the Ponseti method - what seems to be the way to go.

Our worries are that the correct people are doing this treatment- and

how do we know if it isn't - we don't want to misuse this critical

time. We are in Albany, NY - and are quite confused by the whole

thing. I look forward to being a part of your group and look forward

to getting and providing as much support as possible.

[Guest guest]

I hope others have responded to you - I'm several days behind on mail here

but I want to welcome you to the group. I hope indeed your child is seeing a

real Ponseti doctor. Others here from your area can clarify that for you

probably with first hand experience that I lack living in Oklahoma as I do. My

advise though is of a different variety - that you and your wife don't beat

yourselves up over the deformity. You didn't cause it. You could not have

prevented it. There wasn't some magic pill she could have taken. It was the

Tylenol she took one night for a head ache or the day she helped you paint the

new bedroom or the hot tub you sat in or anything like that....it just happens

and we don't know why yet. there was no history of CF in my family until I

gave birth to two boys in a row with it. Remind yourself God Doesn't Make

Junk and embrace those little feet and embrace the knowledge you were trusted

with this child.

Most of all, do your home work, and keep doing your home work, keep asking until

you find the answers that satisfy you. Don't let doctors bully you with their

egos or sense of superiority. Sadly we're finding on this group many so-called

Ponseti doctors who are deciding to re-invent the wheel ... changing the method.

If you ever find yourself in this boat, get out before it sinks.

shawnee

Hello All - Support Needed

Hello All - I'm so happy to see there is a group to come to for

support on a topic that before Sept. 30th I had no idea even existed.

My son was born Sept. 30th with both feet noticably turned inward -

later to be found out to be clubfeet. His mother and I were and still

are in shock as his older brother(17 months old) had no problems what

so ever - and we have both been hearing lots of different opinions but

have no clue what to expect. He was immediately placed in casts - and

they are using the Ponseti method - what seems to be the way to go.

Our worries are that the correct people are doing this treatment- and

how do we know if it isn't - we don't want to misuse this critical

time. We are in Albany, NY - and are quite confused by the whole

thing. I look forward to being a part of your group and look forward

to getting and providing as much support as possible.

[Guest guest]

Thanks ee- I have noticed myself filled with more knowledge every day -

and have gone from a liad back person who normally would agree with whatever a

doctor says- to one that grills the doctors over every step taken in this

process. My wife and I realize that God has given us the opportunity to help

Austin where others may not have.

[Guest guest]

Thanks ee- I have noticed myself filled with more knowledge every day -

and have gone from a liad back person who normally would agree with whatever a

doctor says- to one that grills the doctors over every step taken in this

process. My wife and I realize that God has given us the opportunity to help

Austin where others may not have.

[Guest guest]

LOL! You're welcome. I think there are a lot of parents on this group now who

doctor's hate to see coming!

s.

Re: Hello All - Support Needed

Thanks ee- I have noticed myself filled with more knowledge every day -

and have gone from a liad back person who normally would agree with whatever a

doctor says- to one that grills the doctors over every step taken in this

process. My wife and I realize that God has given us the opportunity to help

Austin where others may not have.

[Guest guest]

LOL! You're welcome. I think there are a lot of parents on this group now who

doctor's hate to see coming!

s.

Re: Hello All - Support Needed

Thanks ee- I have noticed myself filled with more knowledge every day -

and have gone from a liad back person who normally would agree with whatever a

doctor says- to one that grills the doctors over every step taken in this

process. My wife and I realize that God has given us the opportunity to help

Austin where others may not have.