Spoke to Ponseti over the phone!

[Guest guest]

Well I called Dr Ponseti's office myself thinking I would have to

leave a message and wait for a call back. Not at all, I told the

receptionist my situation and wanted to speak w/ him myself to get

more info on Addisyn. She had me hold, and low and behold he came

on the line a few minutes later!! Amazing!!

Anyway, he said to can the AFO's immediately, not a surprise. After

giving him Addisyns background he told me that it sounds like she

has the most severe case of clubfeet called A-Typical or Complex

Syndrome. He stated it only happens in 1 in 100 cases of clubfeet

and it is called that due to the severity of the creases on the base

of the feet. He himself has just in the last year perfected the

treatment with these kinds of feet and says it isn't out yet to

other physicians who are using his method. He said to have my

doctor call him and he would explain the extended treatment to him,

but he (our doc) may not be comfortable doing it. It involves more

casting and a 2nd tenotomy to be performed as well. The casting is

a little more in depth I guess. Anyway, my feeling is I should just

take my daughter out there to see him and have him treat her. He

said it would take about 2 wks to do what he needs to do. They have

a Mc house set up there for his patients and their

families to stay at for $15 per day. If I want it done right I

think I better bite the bullet and hop on a plane. Has anyone else

had their child diagnosed with this syndrome that we are aware of on

the support group. If so please let me know who so I am able to get

some info from them.

Thanks

Mia

[Guest guest]

Hi Mia,

My daughter Sadie has bilateral atypical club foot. Diagnosed by Dr.

Ponseti and treated by Dr Mosca in Seattle. Several members of this

group were also dignosed with atypical club foot. Angel has a very

informative website. I do not know the link but it is here in the

archieves. Is there anything specifically I could answer? Sadie was

treated with two casts (after the original set) and puy in the

mithell shoes. Her corection has held well and there is no surgery in

her forseable future.

> Well I called Dr Ponseti's office myself thinking I would have to

> leave a message and wait for a call back. Not at all, I told the

> receptionist my situation and wanted to speak w/ him myself to get

> more info on Addisyn. She had me hold, and low and behold he came

> on the line a few minutes later!! Amazing!!

> Anyway, he said to can the AFO's immediately, not a surprise.

After

> giving him Addisyns background he told me that it sounds like she

> has the most severe case of clubfeet called A-Typical or Complex

> Syndrome. He stated it only happens in 1 in 100 cases of clubfeet

> and it is called that due to the severity of the creases on the

base

> of the feet. He himself has just in the last year perfected the

> treatment with these kinds of feet and says it isn't out yet to

> other physicians who are using his method. He said to have my

> doctor call him and he would explain the extended treatment to him,

> but he (our doc) may not be comfortable doing it. It involves more

> casting and a 2nd tenotomy to be performed as well. The casting is

> a little more in depth I guess. Anyway, my feeling is I should

just

> take my daughter out there to see him and have him treat her. He

> said it would take about 2 wks to do what he needs to do. They

have

> a Mc house set up there for his patients and their

> families to stay at for $15 per day. If I want it done right I

> think I better bite the bullet and hop on a plane. Has anyone else

> had their child diagnosed with this syndrome that we are aware of

on

> the support group. If so please let me know who so I am able to

get

> some info from them.

>

> Thanks

> Mia

[Guest guest]

Hi Mia,

My daughter Sadie has bilateral atypical club foot. Diagnosed by Dr.

Ponseti and treated by Dr Mosca in Seattle. Several members of this

group were also dignosed with atypical club foot. Angel has a very

informative website. I do not know the link but it is here in the

archieves. Is there anything specifically I could answer? Sadie was

treated with two casts (after the original set) and puy in the

mithell shoes. Her corection has held well and there is no surgery in

her forseable future.

> Well I called Dr Ponseti's office myself thinking I would have to

> leave a message and wait for a call back. Not at all, I told the

> receptionist my situation and wanted to speak w/ him myself to get

> more info on Addisyn. She had me hold, and low and behold he came

> on the line a few minutes later!! Amazing!!

> Anyway, he said to can the AFO's immediately, not a surprise.

After

> giving him Addisyns background he told me that it sounds like she

> has the most severe case of clubfeet called A-Typical or Complex

> Syndrome. He stated it only happens in 1 in 100 cases of clubfeet

> and it is called that due to the severity of the creases on the

base

> of the feet. He himself has just in the last year perfected the

> treatment with these kinds of feet and says it isn't out yet to

> other physicians who are using his method. He said to have my

> doctor call him and he would explain the extended treatment to him,

> but he (our doc) may not be comfortable doing it. It involves more

> casting and a 2nd tenotomy to be performed as well. The casting is

> a little more in depth I guess. Anyway, my feeling is I should

just

> take my daughter out there to see him and have him treat her. He

> said it would take about 2 wks to do what he needs to do. They

have

> a Mc house set up there for his patients and their

> families to stay at for $15 per day. If I want it done right I

> think I better bite the bullet and hop on a plane. Has anyone else

> had their child diagnosed with this syndrome that we are aware of

on

> the support group. If so please let me know who so I am able to

get

> some info from them.

>

> Thanks

> Mia

[Guest guest]

Hi Mia,

My daughter Sadie has bilateral atypical club foot. Diagnosed by Dr.

Ponseti and treated by Dr Mosca in Seattle. Several members of this

group were also dignosed with atypical club foot. Angel has a very

informative website. I do not know the link but it is here in the

archieves. Is there anything specifically I could answer? Sadie was

treated with two casts (after the original set) and puy in the

mithell shoes. Her corection has held well and there is no surgery in

her forseable future.

> Well I called Dr Ponseti's office myself thinking I would have to

> leave a message and wait for a call back. Not at all, I told the

> receptionist my situation and wanted to speak w/ him myself to get

> more info on Addisyn. She had me hold, and low and behold he came

> on the line a few minutes later!! Amazing!!

> Anyway, he said to can the AFO's immediately, not a surprise.

After

> giving him Addisyns background he told me that it sounds like she

> has the most severe case of clubfeet called A-Typical or Complex

> Syndrome. He stated it only happens in 1 in 100 cases of clubfeet

> and it is called that due to the severity of the creases on the

base

> of the feet. He himself has just in the last year perfected the

> treatment with these kinds of feet and says it isn't out yet to

> other physicians who are using his method. He said to have my

> doctor call him and he would explain the extended treatment to him,

> but he (our doc) may not be comfortable doing it. It involves more

> casting and a 2nd tenotomy to be performed as well. The casting is

> a little more in depth I guess. Anyway, my feeling is I should

just

> take my daughter out there to see him and have him treat her. He

> said it would take about 2 wks to do what he needs to do. They

have

> a Mc house set up there for his patients and their

> families to stay at for $15 per day. If I want it done right I

> think I better bite the bullet and hop on a plane. Has anyone else

> had their child diagnosed with this syndrome that we are aware of

on

> the support group. If so please let me know who so I am able to

get

> some info from them.

>

> Thanks

> Mia

[Guest guest]

Hi , thanks for the info, I really appreciate it. My husband

and I talked it over this evening and have decided I am going to

take Addisyn to Iowa. Now it's just a matter of figuring out the

financial parts of it! If anyone can give some advise on that

please let me know. The link you gave for Angel was great, my

daughters feet look exactly like the pics that are posted on that

website. Now at least I know I'm not alone.

Mia

> > Well I called Dr Ponseti's office myself thinking I would have

to

> > leave a message and wait for a call back. Not at all, I told

the

> > receptionist my situation and wanted to speak w/ him myself to

get

> > more info on Addisyn. She had me hold, and low and behold he

came

> > on the line a few minutes later!! Amazing!!

> > Anyway, he said to can the AFO's immediately, not a surprise.

> After

> > giving him Addisyns background he told me that it sounds like

she

> > has the most severe case of clubfeet called A-Typical or Complex

> > Syndrome. He stated it only happens in 1 in 100 cases of

clubfeet

> > and it is called that due to the severity of the creases on the

> base

> > of the feet. He himself has just in the last year perfected the

> > treatment with these kinds of feet and says it isn't out yet to

> > other physicians who are using his method. He said to have my

> > doctor call him and he would explain the extended treatment to

him,

> > but he (our doc) may not be comfortable doing it. It involves

more

> > casting and a 2nd tenotomy to be performed as well. The casting

is

> > a little more in depth I guess. Anyway, my feeling is I should

> just

> > take my daughter out there to see him and have him treat her.

He

> > said it would take about 2 wks to do what he needs to do. They

> have

> > a Mc house set up there for his patients and their

> > families to stay at for $15 per day. If I want it done right I

> > think I better bite the bullet and hop on a plane. Has anyone

else

> > had their child diagnosed with this syndrome that we are aware

of

> on

> > the support group. If so please let me know who so I am able to

> get

> > some info from them.

> >

> > Thanks

> > Mia

[Guest guest]

Mia,

I had the same issue as yours. After my daughter has been treated from

unilateral clubfoot by the ponseti method and she started wearing the

Mitchel sandals, i was not relieved with the position of her feet in

the sandals so i contacted Dr Ponseti and he told me that initialy she

might have atypical clubfoot and that she might need another tenotomy

so i did not understand at that time what was it so i took the first

flight and went meeting him. It really worth the trip. he diagnosed my

child and told me that she have atypical clubfoot but my doctor was so

good that he did a very succesful tentonomy and that she does not need

another one and he relieved me a lot so if you are worried about your

child just go. Believe me it worth the trip

Heidi

> Well I called Dr Ponseti's office myself thinking I would have to

> leave a message and wait for a call back. Not at all, I told the

> receptionist my situation and wanted to speak w/ him myself to get

> more info on Addisyn. She had me hold, and low and behold he came

> on the line a few minutes later!! Amazing!!

> Anyway, he said to can the AFO's immediately, not a surprise. After

> giving him Addisyns background he told me that it sounds like she

> has the most severe case of clubfeet called A-Typical or Complex

> Syndrome. He stated it only happens in 1 in 100 cases of clubfeet

> and it is called that due to the severity of the creases on the base

> of the feet. He himself has just in the last year perfected the

> treatment with these kinds of feet and says it isn't out yet to

> other physicians who are using his method. He said to have my

> doctor call him and he would explain the extended treatment to him,

> but he (our doc) may not be comfortable doing it. It involves more

> casting and a 2nd tenotomy to be performed as well. The casting is

> a little more in depth I guess. Anyway, my feeling is I should just

> take my daughter out there to see him and have him treat her. He

> said it would take about 2 wks to do what he needs to do. They have

> a Mc house set up there for his patients and their

> families to stay at for $15 per day. If I want it done right I

> think I better bite the bullet and hop on a plane. Has anyone else

> had their child diagnosed with this syndrome that we are aware of on

> the support group. If so please let me know who so I am able to get

> some info from them.

>

> Thanks

> Mia