Foot so perfect she can discard brace at 22 mo's!! ARGH!!!

[Guest guest]

Yup... like I thought. She's doing so well she doesn't need it

anymore. If I *want*... I can let her wear it for another 2 mo's till

she's 2... I am not happy! Fortunately I looked him in the eye and said I

would like to keep her in it till she's 3 and I think he knew I meant

business because his next question was " does she need new shoes? "

They're using AFO's pretty standard now too. Apparently these are some

kind of special AFO that are just great... hummm... And not using the DBB

much if at all from what I gathered. Because parents won't use it! I hope

I can help with that somehow. I asked him if he's seeing lots of relapses

then and he said it was too soon to tell or something like that. He's

never heard of the shoes and apparently doesn't have the

information about the 3 year minimum either. Very frustrating...

So I have to do some digging and send him some information. I asked him if

I sent it would he read it and he said he would. He also wants my tips

paper. Said he didn't know I was so *into* all this. I missed the last

appointment so we haven't seen him since June or something like that, maybe

earlier last spring. I should have done more...

Oh well, at least I won't have to go to Seattle to get a script for shoes

and bar. It seems they'll indulge me a while longer with this. It was

kind of tempting to just be done, when he said that it did feel like he

knew what he was talking about but in my heart I know better and we will

see this through and prove to him that it works if done correctly.

And he'd better get back on board with this stuff or I AM going to contact

Dr. Ponseti about his certification and listing. He's a nice guy and I

think he means well... just not as dedicated as I'd like to see or as I

thought he was when we first saw him.

Kori

Darbi - perfect foot girl!

[Guest guest]

Hey Kori,

I know the feeling. And tempting it is to throw that puppy out!!

Darby and Zoe's doctors must have gone to the same FAB school. Ours

says about 2.5 yrs old too because the children won't tolerate it

after that. You know what Buddy, she will tolerate what I tell her

to tolerate if it is for her own good. Not only that she would be in

it 23 hours/day until she walked if it were up to him.

I wonder if Dr. P has any kind of blanket e-mail distribution for the

doctors on his certified list, or some other way to communicate with

them. We could point out to Dr. P that numerous doctors on his list

are not sticking with the guidelines for FAB wear. Shook wrote

just in the last day or two that Dr. Herzenberg had brought

down from 23 to 12. Of course knew better, as do we, but some

parents don't. Our dr. even quotes Dr. P's website using the wrong

hours. I am glad your dr. seems receptive to receiving info from you.

At least you know better Mama!!!

Louisa

Rachael 6-27-99

Zoe 2-22-04 RCF FAB 16/7

> Yup... like I thought. She's doing so well she doesn't need it

> anymore. If I *want*... I can let her wear it for another 2 mo's

till

> she's 2... I am not happy! Fortunately I looked him in the eye

and said I

> would like to keep her in it till she's 3 and I think he knew I

meant

> business because his next question was " does she need new shoes? "

>

> They're using AFO's pretty standard now too. Apparently these are

some

> kind of special AFO that are just great... hummm... And not using

the DBB

> much if at all from what I gathered. Because parents won't use

it! I hope

> I can help with that somehow. I asked him if he's seeing lots of

relapses

> then and he said it was too soon to tell or something like that.

He's

> never heard of the shoes and apparently doesn't have the

> information about the 3 year minimum either. Very frustrating...

>

> So I have to do some digging and send him some information. I

asked him if

> I sent it would he read it and he said he would. He also wants my

tips

> paper. Said he didn't know I was so *into* all this. I missed the

last

> appointment so we haven't seen him since June or something like

that, maybe

> earlier last spring. I should have done more...

>

> Oh well, at least I won't have to go to Seattle to get a script for

shoes

> and bar. It seems they'll indulge me a while longer with this. It

was

> kind of tempting to just be done, when he said that it did feel

like he

> knew what he was talking about but in my heart I know better and we

will

> see this through and prove to him that it works if done correctly.

>

> And he'd better get back on board with this stuff or I AM going to

contact

> Dr. Ponseti about his certification and listing. He's a nice guy

and I

> think he means well... just not as dedicated as I'd like to see or

as I

> thought he was when we first saw him.

>

> Kori

> Darbi - perfect foot girl!

[Guest guest]

Kori,

As frustrated as you are with him, I have to admit I am very jealous

of your frustration. I wish I had the chance to be frustrated over a

doctor who thought my childs feet were perfect enough to be done.

Enjoy this huge milestone and do what you know is right.

Congratulations on reaching that point!! Lord bless you in your quest

to enlighten him! hehe! go get him girl!!!

> Yup... like I thought. She's doing so well she doesn't need it

> anymore. If I *want*... I can let her wear it for another 2 mo's till

> she's 2... I am not happy! Fortunately I looked him in the eye and

said I

> would like to keep her in it till she's 3 and I think he knew I meant

> business because his next question was " does she need new shoes? "

>

> They're using AFO's pretty standard now too. Apparently these are some

> kind of special AFO that are just great... hummm... And not using

the DBB

> much if at all from what I gathered. Because parents won't use it!

I hope

> I can help with that somehow. I asked him if he's seeing lots of

relapses

> then and he said it was too soon to tell or something like that. He's

> never heard of the shoes and apparently doesn't have the

> information about the 3 year minimum either. Very frustrating...

>

> So I have to do some digging and send him some information. I asked

him if

> I sent it would he read it and he said he would. He also wants my tips

> paper. Said he didn't know I was so *into* all this. I missed the

last

> appointment so we haven't seen him since June or something like

that, maybe

> earlier last spring. I should have done more...

>

> Oh well, at least I won't have to go to Seattle to get a script for

shoes

> and bar. It seems they'll indulge me a while longer with this. It was

> kind of tempting to just be done, when he said that it did feel like he

> knew what he was talking about but in my heart I know better and we

will

> see this through and prove to him that it works if done correctly.

>

> And he'd better get back on board with this stuff or I AM going to

contact

> Dr. Ponseti about his certification and listing. He's a nice guy and I

> think he means well... just not as dedicated as I'd like to see or

as I

> thought he was when we first saw him.

>

> Kori

> Darbi - perfect foot girl!

[Guest guest]

Kori, I " m proud of you for sticking to your guns on the 3 years. I really do

think I would send Dr. Ponseti your comments about this doctor not following

protocol. Dr. Ponseti and his method have so much at stake and every time a so

called Ponseti doctor flubs up the method, it sets Dr. Ponseti's life's work

back by leaps and bounds. Maybe your doctor would listen to Dr. P where he

wouldn't quite listen to you as closely. Anyway, I just think the issue needs

addressed and Ponseti should be aware his charges are breaking the system down.

Also yes, definately clean up your tips list for printing, make it clear you

know so it shows up like a nice friendly document parents will be encouraged to

read. If they aren't using the DBB they need your advice and tips!

s.

[Guest guest]

Kori,

That is crazy! Darbi is lucky she's got such a smart mama who can

stick to her guns...unfortunately, I don't have much advice, but good

luck with everything and of course keep us updated. (As if you

wouldn't!)

Darby

Livi 3/15/04 bi cf

EDD #2 5/12/05

> Yup... like I thought. She's doing so well she doesn't need it

> anymore. If I *want*... I can let her wear it for another 2 mo's

till

> she's 2... I am not happy! Fortunately I looked him in the eye

and said I

> would like to keep her in it till she's 3 and I think he knew I

meant

> business because his next question was " does she need new shoes? "

>

> They're using AFO's pretty standard now too. Apparently these are

some

> kind of special AFO that are just great... hummm... And not using

the DBB

> much if at all from what I gathered. Because parents won't use

it! I hope

> I can help with that somehow. I asked him if he's seeing lots of

relapses

> then and he said it was too soon to tell or something like that.

He's

> never heard of the shoes and apparently doesn't have the

> information about the 3 year minimum either. Very frustrating...

>

> So I have to do some digging and send him some information. I

asked him if

> I sent it would he read it and he said he would. He also wants my

tips

> paper. Said he didn't know I was so *into* all this. I missed the

last

> appointment so we haven't seen him since June or something like

that, maybe

> earlier last spring. I should have done more...

>

> Oh well, at least I won't have to go to Seattle to get a script for

shoes

> and bar. It seems they'll indulge me a while longer with this. It

was

> kind of tempting to just be done, when he said that it did feel

like he

> knew what he was talking about but in my heart I know better and we

will

> see this through and prove to him that it works if done correctly.

>

> And he'd better get back on board with this stuff or I AM going to

contact

> Dr. Ponseti about his certification and listing. He's a nice guy

and I

> think he means well... just not as dedicated as I'd like to see or

as I

> thought he was when we first saw him.

>

> Kori

> Darbi - perfect foot girl!

[Guest guest]

Kori,

You mentioned info to give to the doctor.. some ideas .. you might

want to use Dr. Ponseti's article on relapses, referenced here:

http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/13223

Here's a key paragraph:

" In the first 20 years of my practice, relapses occurred in about

half of the patients at ages ranging from ten months to five years,

averaging two-and-one-half years. Usually, relapses were observed

from two to four months after the splints were prematurely discarded

at the families' own initiative, believing that the correction was

stable. More recently, relapses have been less frequent because, for

one thing, I have further overcorrected the deformity in the last

plaster and to be certain that the calcaneus is fully abducted and

its anterior joint surface is well under the head of the talus.

Secondly, there has been greater awareness on the part of the Parents

regarding the importance of maintaining the night splints after

correction for three to four years. "

Also, the Global Health booklet is of course a good source. It has a

section on relapses and the importance of continued brace wear.

Cheers to you for being so determined,

and congrats on such a good checkup!!!

and Claire

[Guest guest]

Good for you Kori!! Stick to your guns!!

As you might remember, Livie had a foot so perfect that her doctor also

discontinued the use of the brace. Her " perfect " little foot relapsed and she

was back in a cast at 2.5 years old. She was recorrected, but she lost a

significant amount of flexibility and we are still unsure whether she will need

to have the ATTT surgery at some point. On top of that she is 3.5 years old and

still wearing that darn brace 16 hours a day.

I have a love/hate thing going on with the brace. I love that it is holding her

recorrection, but I hate fighting with her to put it on. I am completely

inflexible about her brace time and she gets the full 16 hours every single day,

fight or no fight. We're looking at another year minimum and then who knows. I

have told Dr. Ponseti (and I mean it with all my heart and soul) that I will

make her wear this brace until she is sixteen if that is what she needs to avoid

surgery. (Oh no!! Might I be one of those surgery phobic internet parents???

If so, I'll take that title and wear it with pride!)

Had I just followed my own intuition (and Dr. Ponseti's published protocol), we

would never have stopped and she would be just overnight now. I don't know for

100% certainty that she wouldn't have relapsed even had we stayed in the brace,

but I am 99% sure that she wouldn't have.

Please educate this doctor! Share our story with him!! At some point I do

think you should let Dr. Ponseti know that he is NOT following the bracing

protocol. And my gut feeling is that sooner is better than later.

Keep up the good work!!

Jen & Livie

Foot so perfect she can discard brace at 22

mo's!! ARGH!!!

Yup... like I thought. She's doing so well she doesn't need it

anymore. If I *want*... I can let her wear it for another 2 mo's till

she's 2... I am not happy! Fortunately I looked him in the eye and said I

would like to keep her in it till she's 3 and I think he knew I meant

business because his next question was " does she need new shoes? "

They're using AFO's pretty standard now too. Apparently these are some

kind of special AFO that are just great... hummm... And not using the DBB

much if at all from what I gathered. Because parents won't use it! I hope

I can help with that somehow. I asked him if he's seeing lots of relapses

then and he said it was too soon to tell or something like that. He's

never heard of the shoes and apparently doesn't have the

information about the 3 year minimum either. Very frustrating...

So I have to do some digging and send him some information. I asked him if

I sent it would he read it and he said he would. He also wants my tips

paper. Said he didn't know I was so *into* all this. I missed the last

appointment so we haven't seen him since June or something like that, maybe

earlier last spring. I should have done more...

Oh well, at least I won't have to go to Seattle to get a script for shoes

and bar. It seems they'll indulge me a while longer with this. It was

kind of tempting to just be done, when he said that it did feel like he

knew what he was talking about but in my heart I know better and we will

see this through and prove to him that it works if done correctly.

And he'd better get back on board with this stuff or I AM going to contact

Dr. Ponseti about his certification and listing. He's a nice guy and I

think he means well... just not as dedicated as I'd like to see or as I

thought he was when we first saw him.

Kori

Darbi - perfect foot girl!

[Guest guest]

Thanks Louisa,

At this point I don't want to go running to Dr. P. because I think it'll

point right to me if it gets back to him and don't want to undermine any

changes toward the better he may make on his own with the information he

needs (mitchell shoes, relapse study, etc.). I can't help but wonder if he

might be resistant if he's *told on* so to speak. So I think I'd better at

least try to lead him and let it fall into place (hopefully) before I talk

to Dr. P. Plus I still need him to let Darbi wear her shoes for another

year lol!

I'm still not sure why docs think a child needs to drop to 12 hours after

the 23/7. What is the point? At that age (usually infant) all they do is

sit there and coo here and there. This is the easiest time to do the long

hours! What are they thinking they're saving us anyway? Get it done and

over with I say. 16-18 hours/day is easy with a 4 month old. It is much

more difficult with a 2 year old I'm sure. I also feel that if they learn

they have to wear it a lot when they're little it's going to be easier when

they're older to say they MUST wear it at night. So far Darbi really never

has complained. A little pulling feet back or saying no every once in a

while when I put them on at night but other than that she really thinks

nothing of wearing her brace. I am not one for routine or schedules but I

have to say that there's obviously some merit to routines being a good

thing for babies because this sure has worked for us.

Kori

At 11:49 AM 1/18/2005, you wrote:

>Hey Kori,

>

>I know the feeling. And tempting it is to throw that puppy out!!

>Darby and Zoe's doctors must have gone to the same FAB school. Ours

>says about 2.5 yrs old too because the children won't tolerate it

>after that. You know what Buddy, she will tolerate what I tell her

>to tolerate if it is for her own good. Not only that she would be in

>it 23 hours/day until she walked if it were up to him.

>

>I wonder if Dr. P has any kind of blanket e-mail distribution for the

>doctors on his certified list, or some other way to communicate with

>them. We could point out to Dr. P that numerous doctors on his list

>are not sticking with the guidelines for FAB wear. Shook wrote

>just in the last day or two that Dr. Herzenberg had brought

>down from 23 to 12. Of course knew better, as do we, but some

>parents don't. Our dr. even quotes Dr. P's website using the wrong

>hours. I am glad your dr. seems receptive to receiving info from you.

>

>At least you know better Mama!!!

>

>Louisa

>Rachael 6-27-99

>Zoe 2-22-04 RCF FAB 16/7

>

>

>

> > Yup... like I thought. She's doing so well she doesn't need it

> > anymore. If I *want*... I can let her wear it for another 2 mo's

>till

> > she's 2... I am not happy! Fortunately I looked him in the eye

>and said I

> > would like to keep her in it till she's 3 and I think he knew I

>meant

> > business because his next question was " does she need new shoes? "

> >

> > They're using AFO's pretty standard now too. Apparently these are

>some

> > kind of special AFO that are just great... hummm... And not using

>the DBB

> > much if at all from what I gathered. Because parents won't use

>it! I hope

> > I can help with that somehow. I asked him if he's seeing lots of

>relapses

> > then and he said it was too soon to tell or something like that.

>He's

> > never heard of the shoes and apparently doesn't have the

> > information about the 3 year minimum either. Very frustrating...

> >

> > So I have to do some digging and send him some information. I

>asked him if

> > I sent it would he read it and he said he would. He also wants my

>tips

> > paper. Said he didn't know I was so *into* all this. I missed the

>last

> > appointment so we haven't seen him since June or something like

>that, maybe

> > earlier last spring. I should have done more...

> >

> > Oh well, at least I won't have to go to Seattle to get a script for

>shoes

> > and bar. It seems they'll indulge me a while longer with this. It

>was

> > kind of tempting to just be done, when he said that it did feel

>like he

> > knew what he was talking about but in my heart I know better and we

>will

> > see this through and prove to him that it works if done correctly.

> >

> > And he'd better get back on board with this stuff or I AM going to

>contact

> > Dr. Ponseti about his certification and listing. He's a nice guy

>and I

> > think he means well... just not as dedicated as I'd like to see or

>as I

> > thought he was when we first saw him.

> >

> > Kori

> > Darbi - perfect foot girl!

>

>

>

>

>

>

>

[Guest guest]

Yeah, I can totally see that . It's not the same at all but I'm

often jealous (in a weird sort of way, not that I'd want to have problems

with her feet) that people get to go to Iowa. We were lucky in a lot of

factors with Darbi's foot and I am so grateful for all the things that fell

into place for us with this. I imagine her not ever knowing there was

anything wrong with her foot. I honestly don't think she had any idea why

she was at the Dr. yesterday. Someday my dear... your hard work with

will pay off. :~}

In the meantime... we're here for ya!

Kori

At 01:17 PM 1/18/2005, you wrote:

>Kori,

>

>As frustrated as you are with him, I have to admit I am very jealous

>of your frustration. I wish I had the chance to be frustrated over a

>doctor who thought my childs feet were perfect enough to be done.

>

>Enjoy this huge milestone and do what you know is right.

>

>Congratulations on reaching that point!! Lord bless you in your quest

>to enlighten him! hehe! go get him girl!!!

>

>

>

>

> > Yup... like I thought. She's doing so well she doesn't need it

> > anymore. If I *want*... I can let her wear it for another 2 mo's till

> > she's 2... I am not happy! Fortunately I looked him in the eye and

>said I

> > would like to keep her in it till she's 3 and I think he knew I meant

> > business because his next question was " does she need new shoes? "

> >

> > They're using AFO's pretty standard now too. Apparently these are some

> > kind of special AFO that are just great... hummm... And not using

>the DBB

> > much if at all from what I gathered. Because parents won't use it!

> I hope

> > I can help with that somehow. I asked him if he's seeing lots of

>relapses

> > then and he said it was too soon to tell or something like that. He's

> > never heard of the shoes and apparently doesn't have the

> > information about the 3 year minimum either. Very frustrating...

> >

> > So I have to do some digging and send him some information. I asked

>him if

> > I sent it would he read it and he said he would. He also wants my tips

> > paper. Said he didn't know I was so *into* all this. I missed the

>last

> > appointment so we haven't seen him since June or something like

>that, maybe

> > earlier last spring. I should have done more...

> >

> > Oh well, at least I won't have to go to Seattle to get a script for

>shoes

> > and bar. It seems they'll indulge me a while longer with this. It was

> > kind of tempting to just be done, when he said that it did feel like he

> > knew what he was talking about but in my heart I know better and we

>will

> > see this through and prove to him that it works if done correctly.

> >

> > And he'd better get back on board with this stuff or I AM going to

>contact

> > Dr. Ponseti about his certification and listing. He's a nice guy and I

> > think he means well... just not as dedicated as I'd like to see or

>as I

> > thought he was when we first saw him.

> >

> > Kori

> > Darbi - perfect foot girl!

>

>

>

>

>

>

>

[Guest guest]

thank you !

Kori

At 06:57 PM 1/18/2005, you wrote:

>Kori,

>

>You mentioned info to give to the doctor.. some ideas .. you might

>want to use Dr. Ponseti's article on relapses, referenced here:

>http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/13223

>

>Here's a key paragraph:

>

> " In the first 20 years of my practice, relapses occurred in about

>half of the patients at ages ranging from ten months to five years,

>averaging two-and-one-half years. Usually, relapses were observed

>from two to four months after the splints were prematurely discarded

>at the families' own initiative, believing that the correction was

>stable. More recently, relapses have been less frequent because, for

>one thing, I have further overcorrected the deformity in the last

>plaster and to be certain that the calcaneus is fully abducted and

>its anterior joint surface is well under the head of the talus.

>Secondly, there has been greater awareness on the part of the Parents

>regarding the importance of maintaining the night splints after

>correction for three to four years. "

>

>Also, the Global Health booklet is of course a good source. It has a

>section on relapses and the importance of continued brace wear.

>

>Cheers to you for being so determined,

>and congrats on such a good checkup!!!

>

>

> and Claire

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Jen,

I would love if I had a generic testimonial thingie from you on this

subject. Do you have anything like that hanging around that I could send

to him? See, your situation is EXACTLY what I'm afraid of. With her foot

being so supple and flexible and easily corrected it's like I'd totally get

to be the one whose child relapses. Your story sure helps me feel like

I'm doing the right thing for her! Thank you!

Kori

At 07:10 PM 1/18/2005, you wrote:

>Good for you Kori!! Stick to your guns!!

>

>As you might remember, Livie had a foot so perfect that her doctor also

>discontinued the use of the brace. Her " perfect " little foot relapsed and

>she was back in a cast at 2.5 years old. She was recorrected, but she

>lost a significant amount of flexibility and we are still unsure whether

>she will need to have the ATTT surgery at some point. On top of that she

>is 3.5 years old and still wearing that darn brace 16 hours a day.

>

>I have a love/hate thing going on with the brace. I love that it is

>holding her recorrection, but I hate fighting with her to put it on. I am

>completely inflexible about her brace time and she gets the full 16 hours

>every single day, fight or no fight. We're looking at another year

>minimum and then who knows. I have told Dr. Ponseti (and I mean it with

>all my heart and soul) that I will make her wear this brace until she is

>sixteen if that is what she needs to avoid surgery. (Oh no!! Might I be

>one of those surgery phobic internet parents??? If so, I'll take that

>title and wear it with pride!)

>

>Had I just followed my own intuition (and Dr. Ponseti's published

>protocol), we would never have stopped and she would be just overnight

>now. I don't know for 100% certainty that she wouldn't have relapsed even

>had we stayed in the brace, but I am 99% sure that she wouldn't have.

>

>Please educate this doctor! Share our story with him!! At some point I

>do think you should let Dr. Ponseti know that he is NOT following the

>bracing protocol. And my gut feeling is that sooner is better than later.

>

>Keep up the good work!!

>

>Jen & Livie

>

>

>

> Foot so perfect she can discard brace at

> 22 mo's!! ARGH!!!

>

>

> Yup... like I thought. She's doing so well she doesn't need it

> anymore. If I *want*... I can let her wear it for another 2 mo's till

> she's 2... I am not happy! Fortunately I looked him in the eye and

> said I

> would like to keep her in it till she's 3 and I think he knew I meant

> business because his next question was " does she need new shoes? "

>

> They're using AFO's pretty standard now too. Apparently these are some

> kind of special AFO that are just great... hummm... And not using the DBB

> much if at all from what I gathered. Because parents won't use it! I

> hope

> I can help with that somehow. I asked him if he's seeing lots of relapses

> then and he said it was too soon to tell or something like that. He's

> never heard of the shoes and apparently doesn't have the

> information about the 3 year minimum either. Very frustrating...

>

> So I have to do some digging and send him some information. I asked

> him if

> I sent it would he read it and he said he would. He also wants my tips

> paper. Said he didn't know I was so *into* all this. I missed the last

> appointment so we haven't seen him since June or something like that,

> maybe

> earlier last spring. I should have done more...

>

> Oh well, at least I won't have to go to Seattle to get a script for shoes

> and bar. It seems they'll indulge me a while longer with this. It was

> kind of tempting to just be done, when he said that it did feel like he

> knew what he was talking about but in my heart I know better and we will

> see this through and prove to him that it works if done correctly.

>

> And he'd better get back on board with this stuff or I AM going to contact

> Dr. Ponseti about his certification and listing. He's a nice guy and I

> think he means well... just not as dedicated as I'd like to see or as I

> thought he was when we first saw him.

>

> Kori

> Darbi - perfect foot girl!

>

>

>

>

[Guest guest]

Kori,

I remembered another bit of information, from Dr. Morcuende, on brace

wear and age-related risk, posted by not long ago:

http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/29612

note the risk percentages compared from age 2 to age 3