Re: to mr. martin egbert -- advice on a 4 year old Filipino child with club foot

[Guest guest]

,

Here is a link to a prior message about using the Ponseti method

after a prior surgery. I am sorry that the message is from 2003 but

it does contain some examples from parents experiences.

http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/16957

I would encourage you to e-mail Dr. Ponseti directly to see if he is

aware of anyone near you that could provide a second opinion on your

situation.

and (born 3-17-99)

>

> Dear ,

>

> Hello. I am a new member of the no surgery for clubfoot e-groups.

I am

> Paz from the Philippines. I have been reading the messages

in

> our e-groups and was hoping you could help me.

>

> I have a son, JM, who is now 4 years old. He was born with a right

> club foot. He underwent casting since 9 days old and had a tendon

> release surgery (it is 6 inches long) when he was about 5 months

old.

> The doctor required another surgery but when we scheduled it his

blood

> tests did not permit him to go through the operation. We haven't

> scheduled that 2nd operation since then because fear grew in me of

> whatever might happen to that 2nd surgery. I now fear that his

right

> foot has a relapse and I was wondering if Dr. Ponseti can still

treat

> him even if he has undergone one surgery and that he is now nearly

5

> years old? I am really hoping that you can advice us on what to do

or

> what could be our options based on your personal experiences with

the

> Ponseti method.

>

> We are also looking for a Ponseti Treatment Practictioner here in

the

> Philippines but it seems there's no one capable here. Maybe you can

> also advice us if you know of any doctor using the Ponseti Method

in Asia.

>

> Thank you very much. We hope to hear from you soon.

>

> best regards,

> Paz

>

>

> > 9:30 " Worldwide Approach to Clubfoot Treatment "

> > --Norgrove Penny, MD

> >

> > Dr. Penny presented a great summary of the worldwide issue of

> > 140,000 clubfoot children being born per year with 80% of them

in

> > the developing world. He reviewed the Uganda Clubfoot project

and

> > other projects in Malawi, Ghana, Nepal, China and training being

> > done by the U of Iowa in many Central and South American

Countries.

> > They are working on developing a coordinating center that can

help

> > organize donors, countries, doctors, supplies, training

materials,

> > etc. with areas that want a program. They are hoping to take it

to

> > the World Health Organization and get their endorsement of the

> > general method of conducting it. Having one centralized

> > organization to deal with the administrative stuff will let the

> > doctors deal more with going out and doing it as well as making

it

> > easier for more doctors to go.

> >

> > One of the other great things at the meeting was a parent who is

at

> > the Mc house with her 3 year 9 month old adopted

> > daughter from China with untreated clubfoot. Dr. Ponseti is

> > treating her and they are hopeful that it will work to at least

> > minimize any possible surgery and push back the time frames of

when

> > using the Ponseti method is still possible.

> >

> > Dr. Penny explained that he and Dr. Mark Sinclair from Germany

went

> > to China to begin helping a few centers learn about the Ponseti

> > method. He said that because of China's one child rule, that

often

> > children with disabilities are discarded to die while the

luckier

> > ones may get to orphanages. They are hopeful that if the

Ponseti

> > method catches on there, that more children will survive, be

treated

> > and adopted.

> >

> > One doctor mentioned that she was occasionally brought in to

> > counsel " high risk " pregnancies. She said that when the

ultrasounds

> > detect a condition like clubfoot, often the parents are sent to

> > a " high risk " OB doctor who gives them some additional

information

> > and offers advice on alternatives, including abortions. This

doctor

> > said that the first time it kind of shocked her to go into talk

to a

> > pregnant mother who had been told that abortion was an

alternative

> > to having a baby with clubfoot. She said she tried to very

> > clinically tell the pregnant mother that most likely her child

was

> > normal and that current Ponseti method treatment would mean that

the

> > child would be functionally normal in every way. The doctor

noted

> > that we need to get this information out to prospective parents

so

> > that they don't make assumptions based on outdated and incorrect

> > treatments.

> >

> > On Saturday, the older children were examined including two - 49

> > year olds, Ross Snyder and a guy from the Atlanta Track Club,

who

> > had both been treated by Dr. Ponseti in the 1950's. Also, a 25

year

> > old 1st year medical student at the U of Iowa that Dr. Ponseti

had

> > treated a long time ago. There were also lots of kids from

about 7

> > on down. There were probably about 15-20 who raced and about 50-

75

> > who watched. There had been a Friday night dinner of parents at

> > Bennigans in the Coralville Mall. On Saturday, the parents had

> > snacks in the lounge area of the lower level while the older

> > children were examined and prior to going over to the races.

The

> > races were really cute as Dr. and Mrs. Ponseti sat in chairs at

the

> > finish line about 25 yards from the start. The races were

divided

> > by age groups and were just for fun. There were a couple of

> > children racing in casts that did great. Although the younger

> > children went just the 25 yards, the 5-7 year olds decided that

they

> > needed to use the full quarter mile track and they just took off

for

> > the full distance once around. The final race was the two 49

year

> > olds who took off and ran the full quarter mile lap around the

> > track.

> >

> > It was a great 2 days and fun to meet a number of other parents

> > there. I hope that I have communicated what each doctor said

> > accurately. Please remember that I am a parent and not a doctor

and

> > this is my understanding of what was said during the meetings.

It

> > is possible that I may have misunderstood someones presentation

and

> > or not recorded important details of what they presented, so

please

> > do your own research on this information. I hope that this

> > information is of help to others.

> >

> > , Allyson and (born 3-17-99)

> >

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

> >

>

[Guest guest]

Thank you, ...

Egbert wrote: ,

Here is a link to a prior message about using the Ponseti method

after a prior surgery. I am sorry that the message is from 2003 but

it does contain some examples from parents experiences.

http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/16957

I would encourage you to e-mail Dr. Ponseti directly to see if he is

aware of anyone near you that could provide a second opinion on your

situation.

and (born 3-17-99)

>

> Dear ,

>

> Hello. I am a new member of the no surgery for clubfoot e-groups.

I am

> Paz from the Philippines. I have been reading the messages

in

> our e-groups and was hoping you could help me.

>

> I have a son, JM, who is now 4 years old. He was born with a right

> club foot. He underwent casting since 9 days old and had a tendon

> release surgery (it is 6 inches long) when he was about 5 months

old.

> The doctor required another surgery but when we scheduled it his

blood

> tests did not permit him to go through the operation. We haven't

> scheduled that 2nd operation since then because fear grew in me of

> whatever might happen to that 2nd surgery. I now fear that his

right

> foot has a relapse and I was wondering if Dr. Ponseti can still

treat

> him even if he has undergone one surgery and that he is now nearly

5

> years old? I am really hoping that you can advice us on what to do

or

> what could be our options based on your personal experiences with

the

> Ponseti method.

>

> We are also looking for a Ponseti Treatment Practictioner here in

the

> Philippines but it seems there's no one capable here. Maybe you can

> also advice us if you know of any doctor using the Ponseti Method

in Asia.

>

> Thank you very much. We hope to hear from you soon.

>

> best regards,

> Paz

>

>

> > 9:30 " Worldwide Approach to Clubfoot Treatment "

> > --Norgrove Penny, MD

> >

> > Dr. Penny presented a great summary of the worldwide issue of

> > 140,000 clubfoot children being born per year with 80% of them

in

> > the developing world. He reviewed the Uganda Clubfoot project

and

> > other projects in Malawi, Ghana, Nepal, China and training being

> > done by the U of Iowa in many Central and South American

Countries.

> > They are working on developing a coordinating center that can

help

> > organize donors, countries, doctors, supplies, training

materials,

> > etc. with areas that want a program. They are hoping to take it

to

> > the World Health Organization and get their endorsement of the

> > general method of conducting it. Having one centralized

> > organization to deal with the administrative stuff will let the

> > doctors deal more with going out and doing it as well as making

it

> > easier for more doctors to go.

> >

> > One of the other great things at the meeting was a parent who is

at

> > the Mc house with her 3 year 9 month old adopted

> > daughter from China with untreated clubfoot. Dr. Ponseti is

> > treating her and they are hopeful that it will work to at least

> > minimize any possible surgery and push back the time frames of

when

> > using the Ponseti method is still possible.

> >

> > Dr. Penny explained that he and Dr. Mark Sinclair from Germany

went

> > to China to begin helping a few centers learn about the Ponseti

> > method. He said that because of China's one child rule, that

often

> > children with disabilities are discarded to die while the

luckier

> > ones may get to orphanages. They are hopeful that if the

Ponseti

> > method catches on there, that more children will survive, be

treated

> > and adopted.

> >

> > One doctor mentioned that she was occasionally brought in to

> > counsel " high risk " pregnancies. She said that when the

ultrasounds

> > detect a condition like clubfoot, often the parents are sent to

> > a " high risk " OB doctor who gives them some additional

information

> > and offers advice on alternatives, including abortions. This

doctor

> > said that the first time it kind of shocked her to go into talk

to a

> > pregnant mother who had been told that abortion was an

alternative

> > to having a baby with clubfoot. She said she tried to very

> > clinically tell the pregnant mother that most likely her child

was

> > normal and that current Ponseti method treatment would mean that

the

> > child would be functionally normal in every way. The doctor

noted

> > that we need to get this information out to prospective parents

so

> > that they don't make assumptions based on outdated and incorrect

> > treatments.

> >

> > On Saturday, the older children were examined including two - 49

> > year olds, Ross Snyder and a guy from the Atlanta Track Club,

who

> > had both been treated by Dr. Ponseti in the 1950's. Also, a 25

year

> > old 1st year medical student at the U of Iowa that Dr. Ponseti

had

> > treated a long time ago. There were also lots of kids from

about 7

> > on down. There were probably about 15-20 who raced and about 50-

75

> > who watched. There had been a Friday night dinner of parents at

> > Bennigans in the Coralville Mall. On Saturday, the parents had

> > snacks in the lounge area of the lower level while the older

> > children were examined and prior to going over to the races.

The

> > races were really cute as Dr. and Mrs. Ponseti sat in chairs at

the

> > finish line about 25 yards from the start. The races were

divided

> > by age groups and were just for fun. There were a couple of

> > children racing in casts that did great. Although the younger

> > children went just the 25 yards, the 5-7 year olds decided that

they

> > needed to use the full quarter mile track and they just took off

for

> > the full distance once around. The final race was the two 49

year

> > olds who took off and ran the full quarter mile lap around the

> > track.

> >

> > It was a great 2 days and fun to meet a number of other parents

> > there. I hope that I have communicated what each doctor said

> > accurately. Please remember that I am a parent and not a doctor

and

> > this is my understanding of what was said during the meetings.

It

> > is possible that I may have misunderstood someones presentation

and

> > or not recorded important details of what they presented, so

please

> > do your own research on this information. I hope that this

> > information is of help to others.

> >

> > , Allyson and (born 3-17-99)

> >

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

> >

>