Re: Just Joining

[Guest guest]

I'm glad you're here; I'd heard about your story from others recently and was

just totally aghast. I'm so sorry your daughter has gone through so much.

You say she had " Ponseti casting " . Um, are you sure? None of this describes

anything like the Ponseti Method except the use of casts. The method of casting

used in the P-method is very different though. Obviously not all serial casting

is created equal.

There's no use of botox either, or pins... For this doctor to even pretend to

use the Ponseti Method is right up there with blasphamy. It really makes me

angry - like buying a genuine artificial fake fur coat.

How can we help you and your daughter from here aside from finding that doctor

and kicking his butt with botox and pins for you? Seriously, let us know, ask

your questions - what ever we can do to get you all past this and on to happier

days just say the word. My heart breaks for your little girl.

shawnee

Just Joining

My daughter is 6 and a half months old. She

has bilateral clubfoot. She has already had an Achilles Tendon

lengthening on both feet. Her left foot is looking amazing but her

right foot still needs a little work. However, it was a really long

haul to get here. na's had treatment (casting Ponseti

method) since she was 6 days old. nas doctor is researching

the use of botox with these babies. So na had 3 injections

while most babies only have one. In my opinion it did not work at

all for na. na has also been placed under general

anaesthetic 6 times-half of those times being mistakes the doctors

made. After nas surgery(Achilles Tendon and they put pins to

hold her in her casts)-Dec 1, 2005-they put her casts on too tight,

so they had to put her back to sleep again to change her casts.

After 3 weeks of the cast, they started to smell, so we had to go

again-they put her to sleep and once again put her casts on too

tight. So when we got home, I took her to another hospital, and

they split her casts in the front to give a few millimetres leway.

Anyways, they also did that once before her surgery as well. To add

to this, they cut her feet both times they had to use the saw so she

has 2 huge scars going all the way up her feet because of more

mistakes.

By the way, thanks everyone for letting me know about this site

But now, na has custom made Ankle Foot Orthoses (AFO) and we

are gonna start trying the Dennis Browne boots and bars at night.

[Guest guest]

Oh , the more I read about poor na, the more sad I am that you were

not there the day I decided I'd had it with Children's Hospital and the f**king

Botox crap! Not to mention the attitude of a certain Orthopedic Surgeon there.

I would have kidnapped you and taken you with me! But you have found out what

to do next and that is more than has happened for most people that got farther

along with bad treatment. In the end, na will know that you did what you

could at the time and that you made the change that was best at the time that

was best and it was all because you love her so much. Once you are settled

with Dr. Pirani it will all just become a bad memory and she will be right as

rain!

I wonder if Dr. Pirani is getting tired of cleaning up HER messes? By way of

an aside, when I was at the hospital on Friday, I happened to get talking to

the booking clerk there and mentioned that I had come there from " elsewhere "

after bad treatment and she said: " Let me guess....ummmmm....CHILDREN'S? " and

just shook her head when I said yes. Speaks volumes doesn't it?

Huston wrote: Yeah, sorry about that, I am

still new to all these clubfoot terms. Up

until all these mistakes started happening I just trusted the

doctors..........You know the " Ok shes a doctor, she knows what shes doing "

But I totally regret this know....I have done lots of thinking and I never

really spoke up about na's treatment, I just let the docs do their

thing...boy was I ever wrong. There is no point in dwelling on the past

however-just tryin to move on and find somethin better.

Ok so it I found out na's treatment is a modified Ponseti version, so

they say, with Botox.

If I could go back in time, there are many things I would have

changed....na would never have received a botox--let alone 3. The

doctor also used K wires (threaded pins) along with the surgery. These k

wires went in the back of the ankle where the tenotomy is done and came out

the bottom of her foot-An L shape. She also know has 2 huge pressure sores

on the top of her foot because of casts being put on too tight which are

still here and those casts were applied 7 weeks ago now-kinda wonderin if

they are ever gonna go away.

Anyways, I am just sort of wondering exactly what the Ponseti method is and

still trying to figure out the difference between this and na's doctors

method-besides the botox part-

I am slowly doin the research-if anyone can make the long story short, that

would be great

Thanks,

>From: " number23 "

>Reply-To: nosurgery4clubfoot

>To:

>Subject: Re: Just Joining

>Date: Sat, 21 Jan 2006 22:23:12 -0600

>

>I'm glad you're here; I'd heard about your story from others recently and

>was just totally aghast. I'm so sorry your daughter has gone through so

>much.

>

>You say she had " Ponseti casting " . Um, are you sure? None of this

>describes anything like the Ponseti Method except the use of casts. The

>method of casting used in the P-method is very different though. Obviously

>not all serial casting is created equal.

>

> There's no use of botox either, or pins... For this doctor to even

>pretend to use the Ponseti Method is right up there with blasphamy. It

>really makes me angry - like buying a genuine artificial fake fur coat.

>

>How can we help you and your daughter from here aside from finding that

>doctor and kicking his butt with botox and pins for you? Seriously, let us

>know, ask your questions - what ever we can do to get you all past this and

>on to happier days just say the word. My heart breaks for your little

>girl.

>

>shawnee

> Just Joining

>

>

> My daughter is 6 and a half months old. She

> has bilateral clubfoot. She has already had an Achilles Tendon

> lengthening on both feet. Her left foot is looking amazing but her

> right foot still needs a little work. However, it was a really long

> haul to get here. na's had treatment (casting Ponseti

> method) since she was 6 days old. nas doctor is researching

> the use of botox with these babies. So na had 3 injections

> while most babies only have one. In my opinion it did not work at

> all for na. na has also been placed under general

> anaesthetic 6 times-half of those times being mistakes the doctors

> made. After nas surgery(Achilles Tendon and they put pins to

> hold her in her casts)-Dec 1, 2005-they put her casts on too tight,

> so they had to put her back to sleep again to change her casts.

> After 3 weeks of the cast, they started to smell, so we had to go

> again-they put her to sleep and once again put her casts on too

> tight. So when we got home, I took her to another hospital, and

> they split her casts in the front to give a few millimetres leway.

> Anyways, they also did that once before her surgery as well. To add

> to this, they cut her feet both times they had to use the saw so she

> has 2 huge scars going all the way up her feet because of more

> mistakes.

> By the way, thanks everyone for letting me know about this site

> But now, na has custom made Ankle Foot Orthoses (AFO) and we

> are gonna start trying the Dennis Browne boots and bars at night.

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Here's a little bit about us.....

We live in River, BC on Vancouver Island-we travel to Vancouver

either by plane or ferry for na's appts. It is not as bad as before-I

had to move here a few months ago because I lived so far away from any

pediatric orthopaedic surgeon. Besides all the troubles we have had that I

have already mentioned, na has been seeing her doctor since she was six

days old. That was when she received her first set of casts. After that,

we travelled back and forth every week to have her casts changed for 4

weeks, then came the Botox, then another 3 weeks of cast changing.

na's skin was so broken down- and supposedly the Botox was to have

kicked in and brought her heel down-which it didn't. So her doctor told us

to come back in a week and we would do another Botox and 4 weeks of casting.

So we went a week later-skin healed-did the Botox, did the casting. Then

we went back a week later to change the casts and decided we couldn't

because her skin was broken down again. So the doctor decided to try the

Dennis Browne boots and of course, we lasted one nite cuz she wasnt ready

for them. So na's doctor told me that maybe it would work if na

got put under general anaesthetic for a casting cuz she was so strong and

fought too much.... I was scared but went through with it-cuz dr's know what

they are doing-right??? Anyways, that day came and we decided to have a two

week cast and then go back for another general to repeat. Thankfully,

na's skin was broken down cuz I would have went through with the

process once again-but couldnt cuz of her skin. That is when Bri's doctor

brought her boss in and asked for his opinion. He said she would need a

tenotomy. So we had a 6 week break of no correction and then the

operation-then the rest of the story that i already told everyone comes in.

And as for the correction, na's doctor says her left foot is 100%

corrected and her right foot is 99.9% corrected. I think I have to agree

with her when it comes to na's dorsiflexion-it is amazing-thankfully

after all that-but I don't know about the rest of her foot. That is why I

want to get Dr. Pirani's opinion.

Oh yeah, I called Dr. Pirani's office today and na is getting an appt

at the end of Feb.

>

>Reply-To: nosurgery4clubfoot

>To: nosurgery4clubfoot

>Subject: Re: Just Joining

>Date: Sun, 22 Jan 2006 12:39:55 -0800 (PST)

>

>Hello .

>

> I am very sorry to hear about poor na's treatment thus far.

>Somehow I missed any previous posts you had made about her story.

>

> First of all, where are you located? Have you found a qualified doctor

>in the method yet? I may have missed that part of your story as well. You

>mentioned you were going to start the DBB. Are her feet corrected already?

> As you may or may not know, her feet have to be fully corrected before

>going into the DBB or the DBB won't work. Also, you might as well throw

>away the Afo's. You can add them to everyone else's AFO trash pile who use

>to have them. My daughter being one of them. They don't work and are also

>not part of the Ponseti treatment.

>

> I really hope you have found the right doctor for your daughter. The

>poor thing has been through so much (unnecessarily) already. Please let us

>know how elae we can help. Welcome to the board.

> Huston wrote:

> Yeah, sorry about that, I am still new to all these clubfoot terms. Up

>until all these mistakes started happening I just trusted the

>doctors..........You know the " Ok shes a doctor, she knows what shes

>doing "

>But I totally regret this know....I have done lots of thinking and I never

>really spoke up about na's treatment, I just let the docs do their

>thing...boy was I ever wrong. There is no point in dwelling on the past

>however-just tryin to move on and find somethin better.

>

>Ok so it I found out na's treatment is a modified Ponseti version, so

>they say, with Botox.

>If I could go back in time, there are many things I would have

>changed....na would never have received a botox--let alone 3. The

>doctor also used K wires (threaded pins) along with the surgery. These k

>wires went in the back of the ankle where the tenotomy is done and came out

>the bottom of her foot-An L shape. She also know has 2 huge pressure sores

>on the top of her foot because of casts being put on too tight which are

>still here and those casts were applied 7 weeks ago now-kinda wonderin if

>they are ever gonna go away.

>

>Anyways, I am just sort of wondering exactly what the Ponseti method is and

>still trying to figure out the difference between this and na's

>doctors

>method-besides the botox part-

>I am slowly doin the research-if anyone can make the long story short, that

>would be great

>Thanks,

>

>

> >From: " number23 "

> >Reply-To: nosurgery4clubfoot

> >To:

> >Subject: Re: Just Joining

> >Date: Sat, 21 Jan 2006 22:23:12 -0600

> >

> >I'm glad you're here; I'd heard about your story from others recently and

> >was just totally aghast. I'm so sorry your daughter has gone through so

> >much.

> >

> >You say she had " Ponseti casting " . Um, are you sure? None of this

> >describes anything like the Ponseti Method except the use of casts. The

> >method of casting used in the P-method is very different though.

>Obviously

> >not all serial casting is created equal.

> >

> > There's no use of botox either, or pins... For this doctor to even

> >pretend to use the Ponseti Method is right up there with blasphamy. It

> >really makes me angry - like buying a genuine artificial fake fur coat.

> >

> >How can we help you and your daughter from here aside from finding that

> >doctor and kicking his butt with botox and pins for you? Seriously, let

>us

> >know, ask your questions - what ever we can do to get you all past this

>and

> >on to happier days just say the word. My heart breaks for your little

> >girl.

> >

> >shawnee

> > Just Joining

> >

> >

> > My daughter is 6 and a half months old. She

> > has bilateral clubfoot. She has already had an Achilles Tendon

> > lengthening on both feet. Her left foot is looking amazing but her

> > right foot still needs a little work. However, it was a really long

> > haul to get here. na's had treatment (casting Ponseti

> > method) since she was 6 days old. nas doctor is researching

> > the use of botox with these babies. So na had 3 injections

> > while most babies only have one. In my opinion it did not work at

> > all for na. na has also been placed under general

> > anaesthetic 6 times-half of those times being mistakes the doctors

> > made. After nas surgery(Achilles Tendon and they put pins to

> > hold her in her casts)-Dec 1, 2005-they put her casts on too tight,

> > so they had to put her back to sleep again to change her casts.

> > After 3 weeks of the cast, they started to smell, so we had to go

> > again-they put her to sleep and once again put her casts on too

> > tight. So when we got home, I took her to another hospital, and

> > they split her casts in the front to give a few millimetres leway.

> > Anyways, they also did that once before her surgery as well. To add

> > to this, they cut her feet both times they had to use the saw so she

> > has 2 huge scars going all the way up her feet because of more

> > mistakes.

> > By the way, thanks everyone for letting me know about this site

> > But now, na has custom made Ankle Foot Orthoses (AFO) and we

> > are gonna start trying the Dennis Browne boots and bars at night.

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

,

Granted, I know nothing about the Canadian health care system, but it

seems like the end of Feb. is a long time to wait to see Dr. Pirani.

Hopefully the other moms who see him will have a way to get you in

sooner. I would try emailing him directly maybe?

Good luck!

&

[Guest guest]

Hello,

That does seem like a long time to get in to see Dr. Pirani. When we were

considering coming out from Calgary to see him, his nurse said that we could

come the next week as they have clinic every Tuesday, I believe.

The only thing is that he does travel to Africa and other nations quite

frequently to train doctors in Ponseti method.

I think he is out of town right now actually, and that could be why it takes

so long to see him.

Good luck!

Halley

Re: Just Joining

,

Granted, I know nothing about the Canadian health care system, but it

seems like the end of Feb. is a long time to wait to see Dr. Pirani.

Hopefully the other moms who see him will have a way to get you in

sooner. I would try emailing him directly maybe?

Good luck!

&

[Guest guest]

Hi ,

The end of Feb?????? Why so long a wait??

& Grace

> > Yeah, sorry about that, I am still new to all these clubfoot

terms. Up

> >until all these mistakes started happening I just trusted the

> >doctors..........You know the " Ok shes a doctor, she knows what

shes

> >doing "

> >But I totally regret this know....I have done lots of thinking and

I never

> >really spoke up about na's treatment, I just let the docs do

their

> >thing...boy was I ever wrong. There is no point in dwelling on the

past

> >however-just tryin to move on and find somethin better.

> >

> >Ok so it I found out na's treatment is a modified Ponseti

version, so

> >they say, with Botox.

> >If I could go back in time, there are many things I would have

> >changed....na would never have received a botox--let alone 3.

The

> >doctor also used K wires (threaded pins) along with the surgery.

These k

> >wires went in the back of the ankle where the tenotomy is done and

came out

> >the bottom of her foot-An L shape. She also know has 2 huge

pressure sores

> >on the top of her foot because of casts being put on too tight

which are

> >still here and those casts were applied 7 weeks ago now-kinda

wonderin if

> >they are ever gonna go away.

> >

> >Anyways, I am just sort of wondering exactly what the Ponseti

method is and

> >still trying to figure out the difference between this and

na's

> >doctors

> >method-besides the botox part-

> >I am slowly doin the research-if anyone can make the long story

short, that

> >would be great

> >Thanks,

> >

> >

> > >From: " number23 "

> > >Reply-To: nosurgery4clubfoot

> > >To:

> > >Subject: Re: Just Joining

> > >Date: Sat, 21 Jan 2006 22:23:12 -0600

> > >

> > >I'm glad you're here; I'd heard about your story from others

recently and

> > >was just totally aghast. I'm so sorry your daughter has gone

through so

> > >much.

> > >

> > >You say she had " Ponseti casting " . Um, are you sure? None of this

> > >describes anything like the Ponseti Method except the use of

casts. The

> > >method of casting used in the P-method is very different though.

> >Obviously

> > >not all serial casting is created equal.

> > >

> > > There's no use of botox either, or pins... For this doctor to

even

> > >pretend to use the Ponseti Method is right up there with

blasphamy. It

> > >really makes me angry - like buying a genuine artificial fake

fur coat.

> > >

> > >How can we help you and your daughter from here aside from

finding that

> > >doctor and kicking his butt with botox and pins for you?

Seriously, let

> >us

> > >know, ask your questions - what ever we can do to get you all

past this

> >and

> > >on to happier days just say the word. My heart breaks for your

little

> > >girl.

> > >

> > >shawnee

> > > Just Joining

> > >

> > >

> > > My daughter is 6 and a half months old. She

> > > has bilateral clubfoot. She has already had an Achilles Tendon

> > > lengthening on both feet. Her left foot is looking amazing but

her

> > > right foot still needs a little work. However, it was a really

long

> > > haul to get here. na's had treatment (casting Ponseti

> > > method) since she was 6 days old. nas doctor is researching

> > > the use of botox with these babies. So na had 3 injections

> > > while most babies only have one. In my opinion it did not work

at

> > > all for na. na has also been placed under general

> > > anaesthetic 6 times-half of those times being mistakes the

doctors

> > > made. After nas surgery(Achilles Tendon and they put pins

to

> > > hold her in her casts)-Dec 1, 2005-they put her casts on too

tight,

> > > so they had to put her back to sleep again to change her casts.

> > > After 3 weeks of the cast, they started to smell, so we had to

go

> > > again-they put her to sleep and once again put her casts on too

> > > tight. So when we got home, I took her to another hospital, and

> > > they split her casts in the front to give a few millimetres

leway.

> > > Anyways, they also did that once before her surgery as well. To

add

> > > to this, they cut her feet both times they had to use the saw

so she

> > > has 2 huge scars going all the way up her feet because of more

> > > mistakes.

> > > By the way, thanks everyone for letting me know about this site

> > > But now, na has custom made Ankle Foot Orthoses (AFO) and

we

> > > are gonna start trying the Dennis Browne boots and bars at

night.

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Dr. Pirani is going away for 3 weeks

>

>Reply-To: nosurgery4clubfoot

>To: nosurgery4clubfoot

>Subject: Re: Just Joining

>Date: Tue, 24 Jan 2006 19:41:41 -0000

>

>Hi ,

>

>The end of Feb?????? Why so long a wait??

>

> & Grace

>

>

> > > Yeah, sorry about that, I am still new to all these clubfoot

>terms. Up

> > >until all these mistakes started happening I just trusted the

> > >doctors..........You know the " Ok shes a doctor, she knows what

>shes

> > >doing "

> > >But I totally regret this know....I have done lots of thinking and

>I never

> > >really spoke up about na's treatment, I just let the docs do

>their

> > >thing...boy was I ever wrong. There is no point in dwelling on the

>past

> > >however-just tryin to move on and find somethin better.

> > >

> > >Ok so it I found out na's treatment is a modified Ponseti

>version, so

> > >they say, with Botox.

> > >If I could go back in time, there are many things I would have

> > >changed....na would never have received a botox--let alone 3.

>The

> > >doctor also used K wires (threaded pins) along with the surgery.

>These k

> > >wires went in the back of the ankle where the tenotomy is done and

>came out

> > >the bottom of her foot-An L shape. She also know has 2 huge

>pressure sores

> > >on the top of her foot because of casts being put on too tight

>which are

> > >still here and those casts were applied 7 weeks ago now-kinda

>wonderin if

> > >they are ever gonna go away.

> > >

> > >Anyways, I am just sort of wondering exactly what the Ponseti

>method is and

> > >still trying to figure out the difference between this and

>na's

> > >doctors

> > >method-besides the botox part-

> > >I am slowly doin the research-if anyone can make the long story

>short, that

> > >would be great

> > >Thanks,

> > >

> > >

> > > >From: " number23 "

> > > >Reply-To: nosurgery4clubfoot

> > > >To:

> > > >Subject: Re: Just Joining

> > > >Date: Sat, 21 Jan 2006 22:23:12 -0600

> > > >

> > > >I'm glad you're here; I'd heard about your story from others

>recently and

> > > >was just totally aghast. I'm so sorry your daughter has gone

>through so

> > > >much.

> > > >

> > > >You say she had " Ponseti casting " . Um, are you sure? None of this

> > > >describes anything like the Ponseti Method except the use of

>casts. The

> > > >method of casting used in the P-method is very different though.

> > >Obviously

> > > >not all serial casting is created equal.

> > > >

> > > > There's no use of botox either, or pins... For this doctor to

>even

> > > >pretend to use the Ponseti Method is right up there with

>blasphamy. It

> > > >really makes me angry - like buying a genuine artificial fake

>fur coat.

> > > >

> > > >How can we help you and your daughter from here aside from

>finding that

> > > >doctor and kicking his butt with botox and pins for you?

>Seriously, let

> > >us

> > > >know, ask your questions - what ever we can do to get you all

>past this

> > >and

> > > >on to happier days just say the word. My heart breaks for your

>little

> > > >girl.

> > > >

> > > >shawnee

> > > > Just Joining

> > > >

> > > >

> > > > My daughter is 6 and a half months old. She

> > > > has bilateral clubfoot. She has already had an Achilles Tendon

> > > > lengthening on both feet. Her left foot is looking amazing but

>her

> > > > right foot still needs a little work. However, it was a really

>long

> > > > haul to get here. na's had treatment (casting Ponseti

> > > > method) since she was 6 days old. nas doctor is researching

> > > > the use of botox with these babies. So na had 3 injections

> > > > while most babies only have one. In my opinion it did not work

>at

> > > > all for na. na has also been placed under general

> > > > anaesthetic 6 times-half of those times being mistakes the

>doctors

> > > > made. After nas surgery(Achilles Tendon and they put pins

>to

> > > > hold her in her casts)-Dec 1, 2005-they put her casts on too

>tight,

> > > > so they had to put her back to sleep again to change her casts.

> > > > After 3 weeks of the cast, they started to smell, so we had to

>go

> > > > again-they put her to sleep and once again put her casts on too

> > > > tight. So when we got home, I took her to another hospital, and

> > > > they split her casts in the front to give a few millimetres

>leway.

> > > > Anyways, they also did that once before her surgery as well. To

>add

> > > > to this, they cut her feet both times they had to use the saw

>so she

> > > > has 2 huge scars going all the way up her feet because of more

> > > > mistakes.

> > > > By the way, thanks everyone for letting me know about this site

> > > > But now, na has custom made Ankle Foot Orthoses (AFO) and

>we

> > > > are gonna start trying the Dennis Browne boots and bars at

>night.

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >