What do dr's do for a relapse?

[Guest guest]

It is, but there are conditions that need to be considered. At

minimum, the online community here is small in comparison to the

number of children treated. I bet if we could get all the parents

here to respond to a poll the numbers would show appropriately (most

list members aren't active participants and would never know about a

poll). The parents who bother to come here often come because

something is wrong and they need help. How many people just lurk and

post when there's something off they want to ask about? How many just

lurk and thank their lucky stars that they don't have any of the

issues presented here? Many, many I'm sure.

Kori

At 10:00 AM 7/14/2005, you wrote:

>It's just the way the Ponseti method is discussed here, I thought it

>was a lot more successful, that's all.

>

>

>

> > > >

> > > > >

> > > > >

> > > > >

> > > > > We think may be relapsing. He is starting to really

>turn

> > > in his

> > > > > left foot and his right foot is slightly turned in. He still

> > > walks

> > > > > flat on his feet but is very pigeon toed lately. We are

>taking

> > > him to

> > > > > the ortho on Thursday. I am so nervous about what he will

>say.

> > > Anyone

> > > > > with experience with a relapse have any information for me?

> > What

> > > do

> > > > > the dr's usually do when a foot is relapsing? Do they just

>re-

> > > apply a

> > > > > cast? If so, is it below the knee if the kids are walking? I

> > > can't

> > > > > imagine a full leg cast right now.. is running all

>over

> > > the

> > > > > place. Please help!

> > > > >

> > > > > Tichauer

> > > > >

> > > > > 17 months

> > > > >

> > > > >

> > > > > __________________________________________________

> > > > >

[Guest guest]

I was reeading Kori's post and really agree with the following part I

put in quotes. I am a true beliver in the ponseti method but we

didn't start out that way, I belive that is why we are dealing with

relpase, etc, I think Collin's situation is deffianlty contributed to

his intial treatment by his first doctor and maybe even his second

doctor. If we ever have another baby with clubfoot, etc. I would

deffiantly start out with the ponseti method next time from birth.

" Additionally I think many of the relapse stories we're seeing are due

to deficient initial treatment. The success rate for children who >

weren't initially treated with the Method (properly) is going to be >

lower than for those who were treated by a good doc and braced

strictly in the first place. I also think some of the problems could

> be attributed to the recent trend to drop from 23/7 to nights only >

(10-12hr/d) by many, many docs practicing the Method. "

MIchele

Collin's story at http://www.geocities.com/chele323232

[Guest guest]

Jen and Livie

I echo your sentiments exactly! Our situation was almost identical to

yortus. Hope you're all doing well - regards,

> In our case it was 100% successful although I am one who posted about

> our experience with a relapse. Livie did indeed have a relapse at

> 2.5 years old. Her relapse, however, had nothing whatsoever to do

> with the effectiveness of the method. It had to do with her doctor

> releasing her from the brace at 1.5 years old. He felt that she had

> loose ligaments and didn't need to wear the brace anymore. He was

> wrong. Unfortunately, we listened to him.

>

> Had we continued to weaar the brace on Livie until she was 3-4 (as

> per the protocol) I have no doubt that she would have not had a

> relapse. Keep in mind also that you are going to get a

> disproportionately high number of people with " problems " on boards

> like this because they are the people who are reaching out for

> solutions. A family that has had complete success with the method

> with no problems whatsoever may never even know this boarad exists

> because they have never had a need for support.

>

> I don't think anyone here has ever said that this method is perfect.

> Perfect would be if none of our babies were ever born with clubfoot

> or any other birth defect. I do believe that people here have said

> and will continue to say over and over again that the alternative of

> surgery is just not the better choice.

>

> I understand that your child will require surgery and there are

> situations that will always require surgery. In the vast majority of

> children though this method will and does work producing a much

> better result.

>

> Jen & Livie (10-18-01 severe left clubfoot)

>

>>>>>

>>>>>>

>>>>>>

>>>>>>

>>>>>> We think may be relapsing. He is starting to really

>> turn

>>>> in his

>>>>>> left foot and his right foot is slightly turned in. He

> still

>>>> walks

>>>>>> flat on his feet but is very pigeon toed lately. We are

>> taking

>>>> him to

>>>>>> the ortho on Thursday. I am so nervous about what he will

>> say.

>>>> Anyone

>>>>>> with experience with a relapse have any information for me?

>>> What

>>>> do

>>>>>> the dr's usually do when a foot is relapsing? Do they just

>> re-

>>>> apply a

>>>>>> cast? If so, is it below the knee if the kids are walking?

> I

>>>> can't

>>>>>> imagine a full leg cast right now.. is running all

>> over

>>>> the

>>>>>> place. Please help!

>>>>>>

>>>>>> Tichauer

>>>>>>

>>>>>> 17 months

>>>>>>

>>>>>>

>>>>>> __________________________________________________

>>>>>>

[Guest guest]

Hi ,

I remember you emailing me back when Livie was first recorrected! How are

things going for you and your little one? I hope everything is well!

Livie wore her brace for 16 hours for a year and was just dropped to 12-14

in May. She's doing fabulous!

Jen & Livie (10-18-01)

Re: Re: What do dr's do for a relapse?

Jen and Livie

I echo your sentiments exactly! Our situation was almost identical to

yortus. Hope you're all doing well - regards,

> In our case it was 100% successful although I am one who posted about

> our experience with a relapse. Livie did indeed have a relapse at

> 2.5 years old. Her relapse, however, had nothing whatsoever to do

> with the effectiveness of the method. It had to do with her doctor

> releasing her from the brace at 1.5 years old. He felt that she had

> loose ligaments and didn't need to wear the brace anymore. He was

> wrong. Unfortunately, we listened to him.

>

> Had we continued to weaar the brace on Livie until she was 3-4 (as

> per the protocol) I have no doubt that she would have not had a

> relapse. Keep in mind also that you are going to get a

> disproportionately high number of people with " problems " on boards

> like this because they are the people who are reaching out for

> solutions. A family that has had complete success with the method

> with no problems whatsoever may never even know this boarad exists

> because they have never had a need for support.

>

> I don't think anyone here has ever said that this method is perfect.

> Perfect would be if none of our babies were ever born with clubfoot

> or any other birth defect. I do believe that people here have said

> and will continue to say over and over again that the alternative of

> surgery is just not the better choice.

>

> I understand that your child will require surgery and there are

> situations that will always require surgery. In the vast majority of

> children though this method will and does work producing a much

> better result.

>

> Jen & Livie (10-18-01 severe left clubfoot)

>

>>>>>

>>>>>>

>>>>>>

>>>>>>

>>>>>> We think may be relapsing. He is starting to really

>> turn

>>>> in his

>>>>>> left foot and his right foot is slightly turned in. He

> still

>>>> walks

>>>>>> flat on his feet but is very pigeon toed lately. We are

>> taking

>>>> him to

>>>>>> the ortho on Thursday. I am so nervous about what he will

>> say.

>>>> Anyone

>>>>>> with experience with a relapse have any information for me?

>>> What

>>>> do

>>>>>> the dr's usually do when a foot is relapsing? Do they just

>> re-

>>>> apply a

>>>>>> cast? If so, is it below the knee if the kids are walking?

> I

>>>> can't

>>>>>> imagine a full leg cast right now.. is running all

>> over

>>>> the

>>>>>> place. Please help!

>>>>>>

>>>>>> Tichauer

>>>>>>

>>>>>> 17 months

>>>>>>

>>>>>>

>>>>>> __________________________________________________

>>>>>>

[Guest guest]

Begin forwarded message:

>

> Date: Thu Jan 1, 1970 19:12:31 Europe/London

> To: nosurgery4clubfoot

> Subject: Fwd: Re: What do dr's do for a relapse?

>

>

>

> Begin forwarded message:

>

>>

>> Date: Thu Jan 1, 1970 18:53:05 Europe/London

>> To: nosurgery4clubfoot

>> Subject: Re: Re: What do dr's do for a relapse?

>>

>> Hi

>>

>> Henry is now 3 and 3/4's, and has just had an ATTT and heel/capsule

>> release on his right foot - not very pleasant for the first few days

>> but now fine - he is still in his casts and will be for about five

>> more weeks. and I are so pleased that Livie is doing fine -

>> if you can avoid the ATTT that would be just brilliant, and it sounds

>> as though you're going that way. We are now a little concerned about

>> Henry's left foot though, and wonder if you've heard feet being

>> re-cast for a child as late as nearly 4 yrs old?

>>

>> Great that you're doing well - and good on you both for the

>> 16-hour-a-day bar! What make of bar and shoes? Regards,

>>

>>

>>

>> On Saturday, Jul 16, 2005, at 00:15 Europe/London, wrote:

>>

>>> Hi ,

>>>

>>> I remember you emailing me back when Livie was first recorrected!

>>> How are

>>> things going for you and your little one? I hope everything is well!

>>>

>>> Livie wore her brace for 16 hours for a year and was just dropped to

>>> 12-14

>>> in May. She's doing fabulous!

>>>

>>> Jen & Livie (10-18-01)

>>> Re: Re: What do dr's do for a

>>> relapse?

>>>

>>>

>>> Jen and Livie

>>>

>>> I echo your sentiments exactly! Our situation was almost

>>> identical to

>>> yortus. Hope you're all doing well - regards,

>>>

>>>

>>>> In our case it was 100% successful although I am one who posted

>>>> about

>>>> our experience with a relapse. Livie did indeed have a relapse at

>>>> 2.5 years old. Her relapse, however, had nothing whatsoever to do

>>>> with the effectiveness of the method. It had to do with her doctor

>>>> releasing her from the brace at 1.5 years old. He felt that she had

>>>> loose ligaments and didn't need to wear the brace anymore. He was

>>>> wrong. Unfortunately, we listened to him.

>>>>

>>>> Had we continued to weaar the brace on Livie until she was 3-4 (as

>>>> per the protocol) I have no doubt that she would have not had a

>>>> relapse. Keep in mind also that you are going to get a

>>>> disproportionately high number of people with " problems " on boards

>>>> like this because they are the people who are reaching out for

>>>> solutions. A family that has had complete success with the method

>>>> with no problems whatsoever may never even know this boarad exists

>>>> because they have never had a need for support.

>>>>

>>>> I don't think anyone here has ever said that this method is perfect.

>>>> Perfect would be if none of our babies were ever born with clubfoot

>>>> or any other birth defect. I do believe that people here have said

>>>> and will continue to say over and over again that the alternative of

>>>> surgery is just not the better choice.

>>>>

>>>> I understand that your child will require surgery and there are

>>>> situations that will always require surgery. In the vast majority

>>>> of

>>>> children though this method will and does work producing a much

>>>> better result.

>>>>

>>>> Jen & Livie (10-18-01 severe left clubfoot)

>>>>

>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>> We think may be relapsing. He is starting to really

>>>>> turn

>>>>>>> in his

>>>>>>>>> left foot and his right foot is slightly turned in. He

>>>> still

>>>>>>> walks

>>>>>>>>> flat on his feet but is very pigeon toed lately. We are

>>>>> taking

>>>>>>> him to

>>>>>>>>> the ortho on Thursday. I am so nervous about what he will

>>>>> say.

>>>>>>> Anyone

>>>>>>>>> with experience with a relapse have any information for me?

>>>>>> What

>>>>>>> do

>>>>>>>>> the dr's usually do when a foot is relapsing? Do they just

>>>>> re-

>>>>>>> apply a

>>>>>>>>> cast? If so, is it below the knee if the kids are walking?

>>>> I

>>>>>>> can't

>>>>>>>>> imagine a full leg cast right now.. is running all

>>>>> over

>>>>>>> the

>>>>>>>>> place. Please help!

>>>>>>>>>

>>>>>>>>> Tichauer

>>>>>>>>>

>>>>>>>>> 17 months

>>>>>>>>>

>>>>>>>>>

>>>>>>>>> __________________________________________________

>>>>>>>>>

[Guest guest]

Hey le,

I think you know my answer to this one, you little devil! : ) The

ATTT is a much less invasive procedure than the traditional clubfoot

surgeries and is performed in a small % of Ponseti treated feet. The

invasive surgeries in which bones are moved or cut, pins are

inserted, and multiple tendons are transfered or lengthened is what

causes the problems -- stiffness, early onset arthritis, scar tissue

etc. I would rather have Sammy have to have the ATTT after a few

years if he ever has problems with his feet retaining correction

rather than just going into more radical surgeries without ever

trying Ponseti. Oh, and don't forget that it all matters in who

the " ponseti " doc is too, many parents who have to opt for surgery

are in that situation because even Dr. Ponseti himself couldn't fix

what a previous doctor who claimed to be following the method did to

their children's feet.

> >

> > >

> > >

> > >

> > > We think may be relapsing. He is starting to really turn

> in his

> > > left foot and his right foot is slightly turned in. He still

> walks

> > > flat on his feet but is very pigeon toed lately. We are taking

> him to

> > > the ortho on Thursday. I am so nervous about what he will say.

> Anyone

> > > with experience with a relapse have any information for me?

What

> do

> > > the dr's usually do when a foot is relapsing? Do they just re-

> apply a

> > > cast? If so, is it below the knee if the kids are walking? I

> can't

> > > imagine a full leg cast right now.. is running all over

> the

> > > place. Please help!

> > >

> > > Tichauer

> > >

> > > 17 months

> > >

> > >

> > > __________________________________________________

> > >

[Guest guest]

You just like to stir it up don't you, lol!! The method is 95%

effective. The small % who have to have the ATTT or other procedures

are exaggerated here (I think it was who mentioned this),

because this is a support group. If none of us needed support for

anything other than getting those darn Markells shoes on right this

group would not be nearly as successful and powerful as it is. It's

because the parents who do need support in challenging times have

found a group that will offer advice, compassion, a place to vent and

a shoulder to cry on that you see the numbers of parents who are

facing surgery that you do here. Also, don't forget when you read

the posts that say " I'm afraid my son is relapsing " , that a huge

percentage of those come back and say " I was crazy, Dr. Ponseti said

his feet look fantastic! "

> > > >

> > > > >

> > > > >

> > > > >

> > > > > We think may be relapsing. He is starting to really

> turn

> > > in his

> > > > > left foot and his right foot is slightly turned in. He

still

> > > walks

> > > > > flat on his feet but is very pigeon toed lately. We are

> taking

> > > him to

> > > > > the ortho on Thursday. I am so nervous about what he will

> say.

> > > Anyone

> > > > > with experience with a relapse have any information for me?

> > What

> > > do

> > > > > the dr's usually do when a foot is relapsing? Do they just

> re-

> > > apply a

> > > > > cast? If so, is it below the knee if the kids are walking?

I

> > > can't

> > > > > imagine a full leg cast right now.. is running all

> over

> > > the

> > > > > place. Please help!

> > > > >

> > > > > Tichauer

> > > > >

> > > > > 17 months

> > > > >

> > > > >

> > > > > __________________________________________________

> > > > >