Re: upcoming surgery concern for Avery Lynn

[Guest guest]

Hi!! Just wanted to share my experience with you because I can identify with

the problem you are having. My son was diagnosed with bilateral club foot (and

also digeorge syndrome)

when I was 5 months pregnant. We started the casting when he was 1 week old,

after 7-8 weeks of casting he had the tendonomy and then went to the shoes with

the bar. During the time that he was supposed to be wearing the bar, he was in

and out of the hospital for various other surgeries and complications due to the

Digeorge Syndrome. He couldn't wear the bar in the hospital so by the time we

were through all of it, it was impossible to get him to wear it. After about 4

months, his feet began to pull back in.

We brought him to another doctor to get a second opinion. We learned that this

often happens to some kids and sometimes in order to avoid surgery, you have to

go through the whole process all over again. So now at fourteen months old, our

son is in casts again. And believe it or not he is still managing to crawl

around! It is difficult at night, because he also was never a really good

sleeper, and there are plenty of nights that I just want to rip the casts off

and forget the whole thing, but I also know that one day this will all be a

thing of the past and my son will be happily running around with two good

functioning feet. My advice would be to give it a try, it may work this time.

I am sure that your little Avery will resist it at first, but sooner or later

she will find a way to adapt and although she may not like it now, she will

certainly be happier in the future!!

I hope all works our for you!!

Geneva Laccesaglia

ciccionechix4@...> wrote:

Hello to all of you brave families out there...

I just wanted to share my story....

During my pregnancy I went through several ultrasounds due to having

twins.... at about week 20 they detected a left club foot in one of

the babies and at about 24 weeks, they confirmed it. They also

detected an enlarged lateral ventricle and because of the 2 findings

they had sent us to a genetic counsler and we continued to do many

ultrasounds tracking the ventricle (which didn't change as time went

on and they thought they were isolated findings... big relief for

us). Due to all of the stress I was under with not knowing if

baby " B " would be healthy or not and all of the appointments that I

was balancing and also having a 3 year old (at the time) to take

care of.... I went into labor at 31 weeks. I was able to get the

shots to help their lungs develop and I delivered at 32 weeks.

Delaney was born at 4lbs 16 " (with no complications !!! and Avery

was born 3lbs 10oz and 16 " and had to be on a ventilator for 12

hours and also on a low dose of oxygen for a couple of weeks. Avery

was born with the left club foot. The Doctor came to check her foot

out right away and decided to start treatment when she was released

form the NICU (special care nursery). Getting her stabilized was

more important. She got her first cast 4 days after she got home and

had a different cast on every week for 6 weeks and then had the

tendonomy~SP. She then had a cast for 2 weeks and her foot looked

great and she started with the " shoes " . She did great wearing them

full time for 3 months. Then the Dr said she could do just night

time for 12 hours from then on. Avery decided she liked her freedom

and after 3 night of wearing them she wouldn't cooperate at ALL!!!

She would scream an " ear piercing " scream that would wake up the

rest of the family. (If she was the only child MAYBE I could of kept

her in them). The minute we took them off she stopped so we tried a

few different things to help her but nothing seemed to help. The Dr

changed the degree of the shoes but said she couldn't do anymore.

The foot has started turning in and has pretty much gone back to

where it started... she hasn't had the shoes on in months now. She

is 9 months old and we don't feel like we have many options at this

time. The Dr told us the options were to go through castings again

and start over with the shoes or more than likely surgery (which she

really talked down on... she doesn't want to see that happen but the

shoes aren't an option...)Avery is very difficult to get to

cooperate even now. She is a very light sleeper. She has been

through sooo much that I DO NOT want to do surgery but I really am

out of ideas. The only way I could get her to sleep with the shoes

on was on her belly.

Does anyone have any helpful information for us....??? We are going

to see the Dr on the 28th and talking about surgery. I also notice

that the leg with the club foot seems to be a tiny bit shorter...

has anyone had any concerns with that before? Is it because of the

bend and once it is corrected it catches up?? The Dr told us also

that the heel bone doesn't " drop " until they are about 2 years

old... is that true? Could that be why it seems shorter?

Thanks for listening....

God Bless all of us....

The Ciccione's (Chicago, Il)

Rod and

Chesney 8.7.00

Delaney 6.24.04

Avery 6.24.04 left club foot

[Guest guest]

valerie...

my heart goes out to you and your family... but congrats on the wonderful little

ones... and he can still benefit from the Ponseti method of treatment i am

guessing.. you should contact Dr Ponseti and send im pictures and he would be

able to tell you for sure... but to be honest... there will be no avoiding the

shoes if you want the child to have a corrected foot.. reguardless of how much

they balk... it has to be done... and they do grow acustom to the shoes in

time... i promise... but i would strongly urge you to contact Dr P.. he works

such miracles with children and has dedicated his life to the treatment of

clubfooted little ones... and he's such a wonderful person and i've never even

met him face to face... my daughter grace was treated at a non-Ponseti certified

doctor for the first 13 months of her life.. and we had problems and her foot

was relapsing very quickly.. i contacted Dr P and he told me to either bring her

up there to him or to take her to Dr Dobb's in st louis for

treatment... she is now in the braces 16/7.. and her feet are perfect... but it

was a long haul getting to this point... lots of tears on her part and even more

on my part... it's not too late for your little one... but you need to act

fast... don't let another minute get by without finding resolution... the

Ponseti method consists of the same thing that he's already been through.. but

it is very very effective... i know there are hundreds of parents on this board

that can agree with that... please email him and send pictures.. and research,

research, research... this doesn't have to affect your son for the rest of him

life... just for the next 2 years or so... and then it's all over...

as far as the leg legnth difference.. that may be.. and there may also be a

difference in the size of his feet... could even be up to 2 shoe sizes

different.. the clubfoot being smaller... and the calf of the clubfoot could

also be underdeveloped... so what he has now is probably normal... but Dr P will

be able to verify that also... i know i am being pushy about getting him

treatment but it is so very vital and i hate to see any little one have to have

any kind of effects later in life that could be avoided.. and before you even

thought of doing any surgery i would call Dr Ponseti.. it may all be avoided...

hth.. below is a link for Dr Ponseti's email address... and also for his website

so you can read about his method...

ignacio-ponseti@...

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

mommy to Grace 12-03-03 BCF Dobb's Brace 16/7

ciccionechix4@...> wrote:

Hello to all of you brave families out there...

I just wanted to share my story....

During my pregnancy I went through several ultrasounds due to having

twins.... at about week 20 they detected a left club foot in one of

the babies and at about 24 weeks, they confirmed it. They also

detected an enlarged lateral ventricle and because of the 2 findings

they had sent us to a genetic counsler and we continued to do many

ultrasounds tracking the ventricle (which didn't change as time went

on and they thought they were isolated findings... big relief for

us). Due to all of the stress I was under with not knowing if

baby " B " would be healthy or not and all of the appointments that I

was balancing and also having a 3 year old (at the time) to take

care of.... I went into labor at 31 weeks. I was able to get the

shots to help their lungs develop and I delivered at 32 weeks.

Delaney was born at 4lbs 16 " (with no complications !!! and Avery

was born 3lbs 10oz and 16 " and had to be on a ventilator for 12

hours and also on a low dose of oxygen for a couple of weeks. Avery

was born with the left club foot. The Doctor came to check her foot

out right away and decided to start treatment when she was released

form the NICU (special care nursery). Getting her stabilized was

more important. She got her first cast 4 days after she got home and

had a different cast on every week for 6 weeks and then had the

tendonomy~SP. She then had a cast for 2 weeks and her foot looked

great and she started with the " shoes " . She did great wearing them

full time for 3 months. Then the Dr said she could do just night

time for 12 hours from then on. Avery decided she liked her freedom

and after 3 night of wearing them she wouldn't cooperate at ALL!!!

She would scream an " ear piercing " scream that would wake up the

rest of the family. (If she was the only child MAYBE I could of kept

her in them). The minute we took them off she stopped so we tried a

few different things to help her but nothing seemed to help. The Dr

changed the degree of the shoes but said she couldn't do anymore.

The foot has started turning in and has pretty much gone back to

where it started... she hasn't had the shoes on in months now. She

is 9 months old and we don't feel like we have many options at this

time. The Dr told us the options were to go through castings again

and start over with the shoes or more than likely surgery (which she

really talked down on... she doesn't want to see that happen but the

shoes aren't an option...)Avery is very difficult to get to

cooperate even now. She is a very light sleeper. She has been

through sooo much that I DO NOT want to do surgery but I really am

out of ideas. The only way I could get her to sleep with the shoes

on was on her belly.

Does anyone have any helpful information for us....??? We are going

to see the Dr on the 28th and talking about surgery. I also notice

that the leg with the club foot seems to be a tiny bit shorter...

has anyone had any concerns with that before? Is it because of the

bend and once it is corrected it catches up?? The Dr told us also

that the heel bone doesn't " drop " until they are about 2 years

old... is that true? Could that be why it seems shorter?

Thanks for listening....

God Bless all of us....

The Ciccione's (Chicago, Il)

Rod and

Chesney 8.7.00

Delaney 6.24.04

Avery 6.24.04 left club foot

[Guest guest]

,

Welcome to the board!

I would definitely give the casting and brace a second chance.

Surgery may sound like a quick fix but as many will tell you, one

surgery will most often lead to a second surgery and in some cases, a

third surgery and beyond. Surgery also leaves scar tissue which

makes full mobility later on more difficult to achieve.

One question: Did Avery tolerate the brace well during the initial 3

month 'full-time' phase? If so, there's no reason to believe that

she won't be able to tolerate it again a second time. One thing that

I found interesting was that Avery's brace wear was reduced to 12

hours immediately after having been in the brace full-time. I know

that there are others on this list who experienced what you did with

Avery after having dropped hours so drastically. A quick remedy was

to increase the number of hours in the brace and then to drop hours

gradually over a period of time.

One of the mom's on this list recently received an email from Dr.

Ponseti in which he addressed the bracing protocol:

" After 3 months of full time brace wear, we usually gradually wean

the babies out of the brace, starting with 4 hours a day out for one

month, then 8 hours a day out. We try to have the babies wear the

brace at night and naptime for a total of 16-18 hours and once they

are walking wear it at least 14 hours. We used to recommend bracing

continue to age 3, but since we have seen some relapses, we now

recommend 3 1/2 to 4 years of age.

I.V. Ponseti, M.D. "

This is something that you may want to take into consideration if you

decide to retry the casting and brace.

If you have any questions at all, don't hesitate to ask. The members

of this group will be more than happy to help!

Daiga and Owen, 02/04/03

Unilateral LCF, FAB 14/24

>

>

> Hello to all of you brave families out there...

> I just wanted to share my story....

>

> During my pregnancy I went through several ultrasounds due to

having

> twins.... at about week 20 they detected a left club foot in one of

> the babies and at about 24 weeks, they confirmed it. They also

> detected an enlarged lateral ventricle and because of the 2

findings

> they had sent us to a genetic counsler and we continued to do many

> ultrasounds tracking the ventricle (which didn't change as time

went

> on and they thought they were isolated findings... big relief for

> us). Due to all of the stress I was under with not knowing if

> baby " B " would be healthy or not and all of the appointments that I

> was balancing and also having a 3 year old (at the time) to take

> care of.... I went into labor at 31 weeks. I was able to get the

> shots to help their lungs develop and I delivered at 32 weeks.

> Delaney was born at 4lbs 16 " (with no complications !!! and Avery

> was born 3lbs 10oz and 16 " and had to be on a ventilator for 12

> hours and also on a low dose of oxygen for a couple of weeks. Avery

> was born with the left club foot. The Doctor came to check her foot

> out right away and decided to start treatment when she was released

> form the NICU (special care nursery). Getting her stabilized was

> more important. She got her first cast 4 days after she got home

and

> had a different cast on every week for 6 weeks and then had the

> tendonomy~SP. She then had a cast for 2 weeks and her foot looked

> great and she started with the " shoes " . She did great wearing them

> full time for 3 months. Then the Dr said she could do just night

> time for 12 hours from then on. Avery decided she liked her freedom

> and after 3 night of wearing them she wouldn't cooperate at ALL!!!

> She would scream an " ear piercing " scream that would wake up the

> rest of the family. (If she was the only child MAYBE I could of

kept

> her in them). The minute we took them off she stopped so we tried a

> few different things to help her but nothing seemed to help. The Dr

> changed the degree of the shoes but said she couldn't do anymore.

> The foot has started turning in and has pretty much gone back to

> where it started... she hasn't had the shoes on in months now. She

> is 9 months old and we don't feel like we have many options at this

> time. The Dr told us the options were to go through castings again

> and start over with the shoes or more than likely surgery (which

she

> really talked down on... she doesn't want to see that happen but

the

> shoes aren't an option...)Avery is very difficult to get to

> cooperate even now. She is a very light sleeper. She has been

> through sooo much that I DO NOT want to do surgery but I really am

> out of ideas. The only way I could get her to sleep with the shoes

> on was on her belly.

>

> Does anyone have any helpful information for us....??? We are going

> to see the Dr on the 28th and talking about surgery. I also notice

> that the leg with the club foot seems to be a tiny bit shorter...

> has anyone had any concerns with that before? Is it because of the

> bend and once it is corrected it catches up?? The Dr told us also

> that the heel bone doesn't " drop " until they are about 2 years

> old... is that true? Could that be why it seems shorter?

>

> Thanks for listening....

> God Bless all of us....

>

> The Ciccione's (Chicago, Il)

> Rod and

>

> Chesney 8.7.00

> Delaney 6.24.04

> Avery 6.24.04 left club foot

[Guest guest]

Hello

I am so thankful that I found this group.... I am so confused on what to do! My

husband and I do not want to do surgery but with the way that Avery is, it makes

it very hard to keep her in the shoes... like I had said in my story was that if

she was our only one I think I could of tried harder!! She did do very well with

the shoes when they were full time...she wore them about 23 hours a day and

didn't seem to mind until the day we got the OK to wear only at night... and boy

do I wish that we would of weined her off of them because now I can see why it

makes such a difference. At the time we thought....yes, we can finally get these

off during the day!! She did so good with them that I didn't think anything of

it. When she got them fitted the first time the man had told me that some kids

really fight it and when he put them on she really didn't at that time so I

thought that I had it made and she would do OK with them.

So I do know that doing surgery ISN'T a quick fix and that she may need more of

them and that it could cause her pain in her foot as she gets older so that

makes me second guess what we are to do. I really thought that I was set on

surgery but now after reading just a few responses from people on here it makes

me consider doing the casting again. I am so mad at myself for not doing it

sooner. I really think that she was so little and her foot was so tiny when we

first started this that by the time we were done with casting her foot was

really still developing. She was only like 5 pounds when we started... I don't

know if that makes a difference or not. Her foot was so tiny. I am thinking if

we do the casting now and then when she gets them off that she will be standing

and that would help the foot not turn back in because she will be using it. When

she was so tiny she didn't use it.

She is behind as it is because of being 2 months premature (she is only 15

pounds as of now at 10 months old) and I am really afraid of doing the casting

and shoes that it will delay her even more but I am certain that surgery will

also. And what if we do the casting and she wont tolerate the shoes and we have

to do surgery anyways... am I wasting time on the correction? I don't know the

answer to that. We have our appointment with the Ortho next Thursday and I guess

we will have alot of questions for her... and MAYBE do the casting. I am

thinking that I found this website for a reason and it is God's way of telling

me to continue with the casting!!!

Thank you, thank you , thank you for you listening ear!!

I do hope that I make sense to you...

Daiga Grady daiga.grady@...> wrote:

,

Welcome to the board!

I would definitely give the casting and brace a second chance.

Surgery may sound like a quick fix but as many will tell you, one

surgery will most often lead to a second surgery and in some cases, a

third surgery and beyond. Surgery also leaves scar tissue which

makes full mobility later on more difficult to achieve.

One question: Did Avery tolerate the brace well during the initial 3

month 'full-time' phase? If so, there's no reason to believe that

she won't be able to tolerate it again a second time. One thing that

I found interesting was that Avery's brace wear was reduced to 12

hours immediately after having been in the brace full-time. I know

that there are others on this list who experienced what you did with

Avery after having dropped hours so drastically. A quick remedy was

to increase the number of hours in the brace and then to drop hours

gradually over a period of time.

One of the mom's on this list recently received an email from Dr.

Ponseti in which he addressed the bracing protocol:

" After 3 months of full time brace wear, we usually gradually wean

the babies out of the brace, starting with 4 hours a day out for one

month, then 8 hours a day out. We try to have the babies wear the

brace at night and naptime for a total of 16-18 hours and once they

are walking wear it at least 14 hours. We used to recommend bracing

continue to age 3, but since we have seen some relapses, we now

recommend 3 1/2 to 4 years of age.

I.V. Ponseti, M.D. "

This is something that you may want to take into consideration if you

decide to retry the casting and brace.

If you have any questions at all, don't hesitate to ask. The members

of this group will be more than happy to help!

Daiga and Owen, 02/04/03

Unilateral LCF, FAB 14/24

>

>

> Hello to all of you brave families out there...

> I just wanted to share my story....

>

> During my pregnancy I went through several ultrasounds due to

having

> twins.... at about week 20 they detected a left club foot in one of

> the babies and at about 24 weeks, they confirmed it. They also

> detected an enlarged lateral ventricle and because of the 2

findings

> they had sent us to a genetic counsler and we continued to do many

> ultrasounds tracking the ventricle (which didn't change as time

went

> on and they thought they were isolated findings... big relief for

> us). Due to all of the stress I was under with not knowing if

> baby " B " would be healthy or not and all of the appointments that I

> was balancing and also having a 3 year old (at the time) to take

> care of.... I went into labor at 31 weeks. I was able to get the

> shots to help their lungs develop and I delivered at 32 weeks.

> Delaney was born at 4lbs 16 " (with no complications !!! and Avery

> was born 3lbs 10oz and 16 " and had to be on a ventilator for 12

> hours and also on a low dose of oxygen for a couple of weeks. Avery

> was born with the left club foot. The Doctor came to check her foot

> out right away and decided to start treatment when she was released

> form the NICU (special care nursery). Getting her stabilized was

> more important. She got her first cast 4 days after she got home

and

> had a different cast on every week for 6 weeks and then had the

> tendonomy~SP. She then had a cast for 2 weeks and her foot looked

> great and she started with the " shoes " . She did great wearing them

> full time for 3 months. Then the Dr said she could do just night

> time for 12 hours from then on. Avery decided she liked her freedom

> and after 3 night of wearing them she wouldn't cooperate at ALL!!!

> She would scream an " ear piercing " scream that would wake up the

> rest of the family. (If she was the only child MAYBE I could of

kept

> her in them). The minute we took them off she stopped so we tried a

> few different things to help her but nothing seemed to help. The Dr

> changed the degree of the shoes but said she couldn't do anymore.

> The foot has started turning in and has pretty much gone back to

> where it started... she hasn't had the shoes on in months now. She

> is 9 months old and we don't feel like we have many options at this

> time. The Dr told us the options were to go through castings again

> and start over with the shoes or more than likely surgery (which

she

> really talked down on... she doesn't want to see that happen but

the

> shoes aren't an option...)Avery is very difficult to get to

> cooperate even now. She is a very light sleeper. She has been

> through sooo much that I DO NOT want to do surgery but I really am

> out of ideas. The only way I could get her to sleep with the shoes

> on was on her belly.

>

> Does anyone have any helpful information for us....??? We are going

> to see the Dr on the 28th and talking about surgery. I also notice

> that the leg with the club foot seems to be a tiny bit shorter...

> has anyone had any concerns with that before? Is it because of the

> bend and once it is corrected it catches up?? The Dr told us also

> that the heel bone doesn't " drop " until they are about 2 years

> old... is that true? Could that be why it seems shorter?

>

> Thanks for listening....

> God Bless all of us....

>

> The Ciccione's (Chicago, Il)

> Rod and

>

> Chesney 8.7.00

> Delaney 6.24.04

> Avery 6.24.04 left club foot

[Guest guest]

.

As mentioned, the reason for Avery's issue with the brace may

very well be that she lost considerable correction immediately as a

result of being reduced to 12 hours. If the foot is not fully

corrected, it's would be very difficult, if not impossible, to

tolerate that 70 degree outward rotation on the affected foot.

Brace compliance, especially in the first year, is one of the key

components in the success rate of the Ponseti Method.

Here's the deal. If you decide that re-casting and FAB is what you

want to do, we're all here to help you along the way, to support you,

to trouble-shoot in the event that you have any problems, give you

tips and suggestions and to be your sounding board. Keep in mind

that many, many, many children whose parents are on this board have

re-started treatment at later ages for a variety of reasons. You are

definitely not alone!

If ever you want to talk, feel free to email me. I'll be happy to

exchange phone numbers and we can chat.

Daiga and Owen, 02/04/03

Unilateral LCF, FAB 14/7

> >

> >

> > Hello to all of you brave families out there...

> > I just wanted to share my story....

> >

> > During my pregnancy I went through several ultrasounds due to

> having

> > twins.... at about week 20 they detected a left club foot in one

of

> > the babies and at about 24 weeks, they confirmed it. They also

> > detected an enlarged lateral ventricle and because of the 2

> findings

> > they had sent us to a genetic counsler and we continued to do

many

> > ultrasounds tracking the ventricle (which didn't change as time

> went

> > on and they thought they were isolated findings... big relief for

> > us). Due to all of the stress I was under with not knowing if

> > baby " B " would be healthy or not and all of the appointments that

I

> > was balancing and also having a 3 year old (at the time) to take

> > care of.... I went into labor at 31 weeks. I was able to get the

> > shots to help their lungs develop and I delivered at 32 weeks.

> > Delaney was born at 4lbs 16 " (with no complications !!! and

Avery

> > was born 3lbs 10oz and 16 " and had to be on a ventilator for 12

> > hours and also on a low dose of oxygen for a couple of weeks.

Avery

> > was born with the left club foot. The Doctor came to check her

foot

> > out right away and decided to start treatment when she was

released

> > form the NICU (special care nursery). Getting her stabilized was

> > more important. She got her first cast 4 days after she got home

> and

> > had a different cast on every week for 6 weeks and then had the

> > tendonomy~SP. She then had a cast for 2 weeks and her foot looked

> > great and she started with the " shoes " . She did great wearing

them

> > full time for 3 months. Then the Dr said she could do just night

> > time for 12 hours from then on. Avery decided she liked her

freedom

> > and after 3 night of wearing them she wouldn't cooperate at

ALL!!!

> > She would scream an " ear piercing " scream that would wake up the

> > rest of the family. (If she was the only child MAYBE I could of

> kept

> > her in them). The minute we took them off she stopped so we tried

a

> > few different things to help her but nothing seemed to help. The

Dr

> > changed the degree of the shoes but said she couldn't do anymore.

> > The foot has started turning in and has pretty much gone back to

> > where it started... she hasn't had the shoes on in months now.

She

> > is 9 months old and we don't feel like we have many options at

this

> > time. The Dr told us the options were to go through castings

again

> > and start over with the shoes or more than likely surgery (which

> she

> > really talked down on... she doesn't want to see that happen but

> the

> > shoes aren't an option...)Avery is very difficult to get to

> > cooperate even now. She is a very light sleeper. She has been

> > through sooo much that I DO NOT want to do surgery but I really

am

> > out of ideas. The only way I could get her to sleep with the

shoes

> > on was on her belly.

> >

> > Does anyone have any helpful information for us....??? We are

going

> > to see the Dr on the 28th and talking about surgery. I also

notice

> > that the leg with the club foot seems to be a tiny bit shorter...

> > has anyone had any concerns with that before? Is it because of

the

> > bend and once it is corrected it catches up?? The Dr told us also

> > that the heel bone doesn't " drop " until they are about 2 years

> > old... is that true? Could that be why it seems shorter?

> >

> > Thanks for listening....

> > God Bless all of us....

> >

> > The Ciccione's (Chicago, Il)

> > Rod and

> >

> > Chesney 8.7.00

> > Delaney 6.24.04

> > Avery 6.24.04 left club foot

>

>

>

>

>

>

[Guest guest]

,

I just wanted to add...someone said this one time on here and it

really hit home with me...if you do casting first, you can always go

the surgical route later if you need. But if you go with the

surgery, you can't go back and do the casting/FAB later. Surgery is

permanent. And (I'm no doctor) but it doesn't seem like waiting to

do surgery will harm anything. It seems like alot of the time kids

have to wait to have the surgery. But there IS a limited time span

to really use the Ponseti method & achieve optimal results.

The last thing I wanted to add was that I too had to " wean " my

daughter off the 23/7 wear. She would fuss if it was off for more

than an hour at first. But she's perfectly happy now!

Hope this helps!

, mommy of:

Guinevere, on, Ava 8/4/04 RCF ABS FAB 18/7

-- In nosurgery4clubfoot , valerie ciccione

wrote:

>

> Hello

>

> I am so thankful that I found this group.... I am so confused on

what to do! My husband and I do not want to do surgery but with the

way that Avery is, it makes it very hard to keep her in the shoes...

like I had said in my story was that if she was our only one I think

I could of tried harder!! She did do very well with the shoes when

they were full time...she wore them about 23 hours a day and didn't

seem to mind until the day we got the OK to wear only at night...

and boy do I wish that we would of weined her off of them because

now I can see why it makes such a difference. At the time we

thought....yes, we can finally get these off during the day!! She

did so good with them that I didn't think anything of it. When she

got them fitted the first time the man had told me that some kids

really fight it and when he put them on she really didn't at that

time so I thought that I had it made and she would do OK with them.

>

> So I do know that doing surgery ISN'T a quick fix and that she may

need more of them and that it could cause her pain in her foot as

she gets older so that makes me second guess what we are to do. I

really thought that I was set on surgery but now after reading just

a few responses from people on here it makes me consider doing the

casting again. I am so mad at myself for not doing it sooner. I

really think that she was so little and her foot was so tiny when we

first started this that by the time we were done with casting her

foot was really still developing. She was only like 5 pounds when

we started... I don't know if that makes a difference or not. Her

foot was so tiny. I am thinking if we do the casting now and then

when she gets them off that she will be standing and that would help

the foot not turn back in because she will be using it. When she was

so tiny she didn't use it.

>

> She is behind as it is because of being 2 months premature (she is

only 15 pounds as of now at 10 months old) and I am really afraid of

doing the casting and shoes that it will delay her even more but I

am certain that surgery will also. And what if we do the casting and

she wont tolerate the shoes and we have to do surgery anyways... am

I wasting time on the correction? I don't know the answer to that.

We have our appointment with the Ortho next Thursday and I guess we

will have alot of questions for her... and MAYBE do the casting. I

am thinking that I found this website for a reason and it is God's

way of telling me to continue with the casting!!!

> Thank you, thank you , thank you for you listening ear!!

>

> I do hope that I make sense to you...

>

>

>

> Daiga Grady wrote:

>

> ,

>

> Welcome to the board!

>

> I would definitely give the casting and brace a second chance.

> Surgery may sound like a quick fix but as many will tell you, one

> surgery will most often lead to a second surgery and in some

cases, a

> third surgery and beyond. Surgery also leaves scar tissue which

> makes full mobility later on more difficult to achieve.

>

> One question: Did Avery tolerate the brace well during the

initial 3

> month 'full-time' phase? If so, there's no reason to believe that

> she won't be able to tolerate it again a second time. One thing

that

> I found interesting was that Avery's brace wear was reduced to 12

> hours immediately after having been in the brace full-time. I

know

> that there are others on this list who experienced what you did

with

> Avery after having dropped hours so drastically. A quick remedy

was

> to increase the number of hours in the brace and then to drop

hours

> gradually over a period of time.

>

> One of the mom's on this list recently received an email from Dr.

> Ponseti in which he addressed the bracing protocol:

>

> " After 3 months of full time brace wear, we usually gradually wean

> the babies out of the brace, starting with 4 hours a day out for

one

> month, then 8 hours a day out. We try to have the babies wear the

> brace at night and naptime for a total of 16-18 hours and once they

> are walking wear it at least 14 hours. We used to recommend bracing

> continue to age 3, but since we have seen some relapses, we now

> recommend 3 1/2 to 4 years of age.

>

> I.V. Ponseti, M.D. "

>

> This is something that you may want to take into consideration if

you

> decide to retry the casting and brace.

>

> If you have any questions at all, don't hesitate to ask. The

members

> of this group will be more than happy to help!

>

> Daiga and Owen, 02/04/03

> Unilateral LCF, FAB 14/24

>

>

>

>

>

> >

> >

> > Hello to all of you brave families out there...

> > I just wanted to share my story....

> >

> > During my pregnancy I went through several ultrasounds due to

> having

> > twins.... at about week 20 they detected a left club foot in one

of

> > the babies and at about 24 weeks, they confirmed it. They also

> > detected an enlarged lateral ventricle and because of the 2

> findings

> > they had sent us to a genetic counsler and we continued to do

many

> > ultrasounds tracking the ventricle (which didn't change as time

> went

> > on and they thought they were isolated findings... big relief

for

> > us). Due to all of the stress I was under with not knowing if

> > baby " B " would be healthy or not and all of the appointments

that I

> > was balancing and also having a 3 year old (at the time) to take

> > care of.... I went into labor at 31 weeks. I was able to get the

> > shots to help their lungs develop and I delivered at 32 weeks.

> > Delaney was born at 4lbs 16 " (with no complications !!! and

Avery

> > was born 3lbs 10oz and 16 " and had to be on a ventilator for 12

> > hours and also on a low dose of oxygen for a couple of weeks.

Avery

> > was born with the left club foot. The Doctor came to check her

foot

> > out right away and decided to start treatment when she was

released

> > form the NICU (special care nursery). Getting her stabilized was

> > more important. She got her first cast 4 days after she got home

> and

> > had a different cast on every week for 6 weeks and then had the

> > tendonomy~SP. She then had a cast for 2 weeks and her foot

looked

> > great and she started with the " shoes " . She did great wearing

them

> > full time for 3 months. Then the Dr said she could do just night

> > time for 12 hours from then on. Avery decided she liked her

freedom

> > and after 3 night of wearing them she wouldn't cooperate at

ALL!!!

> > She would scream an " ear piercing " scream that would wake up the

> > rest of the family. (If she was the only child MAYBE I could of

> kept

> > her in them). The minute we took them off she stopped so we

tried a

> > few different things to help her but nothing seemed to help. The

Dr

> > changed the degree of the shoes but said she couldn't do

anymore.

> > The foot has started turning in and has pretty much gone back to

> > where it started... she hasn't had the shoes on in months now.

She

> > is 9 months old and we don't feel like we have many options at

this

> > time. The Dr told us the options were to go through castings

again

> > and start over with the shoes or more than likely surgery (which

> she

> > really talked down on... she doesn't want to see that happen but

> the

> > shoes aren't an option...)Avery is very difficult to get to

> > cooperate even now. She is a very light sleeper. She has been

> > through sooo much that I DO NOT want to do surgery but I really

am

> > out of ideas. The only way I could get her to sleep with the

shoes

> > on was on her belly.

> >

> > Does anyone have any helpful information for us....??? We are

going

> > to see the Dr on the 28th and talking about surgery. I also

notice

> > that the leg with the club foot seems to be a tiny bit

shorter...

> > has anyone had any concerns with that before? Is it because of

the

> > bend and once it is corrected it catches up?? The Dr told us

also

> > that the heel bone doesn't " drop " until they are about 2 years

> > old... is that true? Could that be why it seems shorter?

> >

> > Thanks for listening....

> > God Bless all of us....

> >

> > The Ciccione's (Chicago, Il)

> > Rod and

> >

> > Chesney 8.7.00

> > Delaney 6.24.04

> > Avery 6.24.04 left club foot

>

>

>

>

>

>

[Guest guest]

Thank you so much for your input.... I have done a complete change on my

thinking.... we are going to see the doctor on Thursday and talk about

recasting... we really didn't think we could possibly do that but at this point

we can't imagine putting her through many surgeries and the pain she will have

her entire life.... a few years of this is worth the lifelong effects!!! As all

we can do is try it and see what happens... I am really upset that we went from

23/7 to 12/7... I really do believe now that that is the problem that

happened... she did tolerate the shoes just fine when it was full time and then

after about 3 days of not having to wear them we thought that she just really

liked her freedom....

I would like to talk with you about this if you wouldn't mind....

I am going to leave my info for you and if you don't mind then please let me

know by emaling your phone number unless you aren't comfortable with that....

Ciccione (Chicago, IL)

1.

Daiga Grady daiga.grady@...> wrote:

.

As mentioned, the reason for Avery's issue with the brace may

very well be that she lost considerable correction immediately as a

result of being reduced to 12 hours. If the foot is not fully

corrected, it's would be very difficult, if not impossible, to

tolerate that 70 degree outward rotation on the affected foot.

Brace compliance, especially in the first year, is one of the key

components in the success rate of the Ponseti Method.

Here's the deal. If you decide that re-casting and FAB is what you

want to do, we're all here to help you along the way, to support you,

to trouble-shoot in the event that you have any problems, give you

tips and suggestions and to be your sounding board. Keep in mind

that many, many, many children whose parents are on this board have

re-started treatment at later ages for a variety of reasons. You are

definitely not alone!

If ever you want to talk, feel free to email me. I'll be happy to

exchange phone numbers and we can chat.

Daiga and Owen, 02/04/03

Unilateral LCF, FAB 14/7

> >

> >

> > Hello to all of you brave families out there...

> > I just wanted to share my story....

> >

> > During my pregnancy I went through several ultrasounds due to

> having

> > twins.... at about week 20 they detected a left club foot in one

of

> > the babies and at about 24 weeks, they confirmed it. They also

> > detected an enlarged lateral ventricle and because of the 2

> findings

> > they had sent us to a genetic counsler and we continued to do

many

> > ultrasounds tracking the ventricle (which didn't change as time

> went

> > on and they thought they were isolated findings... big relief for

> > us). Due to all of the stress I was under with not knowing if

> > baby " B " would be healthy or not and all of the appointments that

I

> > was balancing and also having a 3 year old (at the time) to take

> > care of.... I went into labor at 31 weeks. I was able to get the

> > shots to help their lungs develop and I delivered at 32 weeks.

> > Delaney was born at 4lbs 16 " (with no complications !!! and

Avery

> > was born 3lbs 10oz and 16 " and had to be on a ventilator for 12

> > hours and also on a low dose of oxygen for a couple of weeks.

Avery

> > was born with the left club foot. The Doctor came to check her

foot

> > out right away and decided to start treatment when she was

released

> > form the NICU (special care nursery). Getting her stabilized was

> > more important. She got her first cast 4 days after she got home

> and

> > had a different cast on every week for 6 weeks and then had the

> > tendonomy~SP. She then had a cast for 2 weeks and her foot looked

> > great and she started with the " shoes " . She did great wearing

them

> > full time for 3 months. Then the Dr said she could do just night

> > time for 12 hours from then on. Avery decided she liked her

freedom

> > and after 3 night of wearing them she wouldn't cooperate at

ALL!!!

> > She would scream an " ear piercing " scream that would wake up the

> > rest of the family. (If she was the only child MAYBE I could of

> kept

> > her in them). The minute we took them off she stopped so we tried

a

> > few different things to help her but nothing seemed to help. The

Dr

> > changed the degree of the shoes but said she couldn't do anymore.

> > The foot has started turning in and has pretty much gone back to

> > where it started... she hasn't had the shoes on in months now.

She

> > is 9 months old and we don't feel like we have many options at

this

> > time. The Dr told us the options were to go through castings

again

> > and start over with the shoes or more than likely surgery (which

> she

> > really talked down on... she doesn't want to see that happen but

> the

> > shoes aren't an option...)Avery is very difficult to get to

> > cooperate even now. She is a very light sleeper. She has been

> > through sooo much that I DO NOT want to do surgery but I really

am

> > out of ideas. The only way I could get her to sleep with the

shoes

> > on was on her belly.

> >

> > Does anyone have any helpful information for us....??? We are

going

> > to see the Dr on the 28th and talking about surgery. I also

notice

> > that the leg with the club foot seems to be a tiny bit shorter...

> > has anyone had any concerns with that before? Is it because of

the

> > bend and once it is corrected it catches up?? The Dr told us also

> > that the heel bone doesn't " drop " until they are about 2 years

> > old... is that true? Could that be why it seems shorter?

> >

> > Thanks for listening....

> > God Bless all of us....

> >

> > The Ciccione's (Chicago, Il)

> > Rod and

> >

> > Chesney 8.7.00

> > Delaney 6.24.04

> > Avery 6.24.04 left club foot

>

>

>

>

>

>

[Guest guest]

Thank you so much for the great advice....I didn't think we would change our

minds because the shoes just weren't working out for us after we went to 12/7.

They were fine full time for 3 months so I think we just didn't wean her off of

them...we thought she and ourselves would like to have them for only 12 hours a

day and didn't think that she would " rebel " against them. We go see the doctor

on Thursday the 28th and I am thinking we will start casting at that point. We

were going to talk about scheduling surgery so I cannot tell you all how happy I

am to have found this website. I am so thankful to have such a wonderful group

of people to talk with that can all help each other work through this!!!

Blessings to all....

redskline123@...> wrote:

,

I just wanted to add...someone said this one time on here and it

really hit home with me...if you do casting first, you can always go

the surgical route later if you need. But if you go with the

surgery, you can't go back and do the casting/FAB later. Surgery is

permanent. And (I'm no doctor) but it doesn't seem like waiting to

do surgery will harm anything. It seems like alot of the time kids

have to wait to have the surgery. But there IS a limited time span

to really use the Ponseti method & achieve optimal results.

The last thing I wanted to add was that I too had to " wean " my

daughter off the 23/7 wear. She would fuss if it was off for more

than an hour at first. But she's perfectly happy now!

Hope this helps!

, mommy of:

Guinevere, on, Ava 8/4/04 RCF ABS FAB 18/7

-- In nosurgery4clubfoot , valerie ciccione

wrote:

>

> Hello

>

> I am so thankful that I found this group.... I am so confused on

what to do! My husband and I do not want to do surgery but with the

way that Avery is, it makes it very hard to keep her in the shoes...

like I had said in my story was that if she was our only one I think

I could of tried harder!! She did do very well with the shoes when

they were full time...she wore them about 23 hours a day and didn't

seem to mind until the day we got the OK to wear only at night...

and boy do I wish that we would of weined her off of them because

now I can see why it makes such a difference. At the time we

thought....yes, we can finally get these off during the day!! She

did so good with them that I didn't think anything of it. When she

got them fitted the first time the man had told me that some kids

really fight it and when he put them on she really didn't at that

time so I thought that I had it made and she would do OK with them.

>

> So I do know that doing surgery ISN'T a quick fix and that she may

need more of them and that it could cause her pain in her foot as

she gets older so that makes me second guess what we are to do. I

really thought that I was set on surgery but now after reading just

a few responses from people on here it makes me consider doing the

casting again. I am so mad at myself for not doing it sooner. I

really think that she was so little and her foot was so tiny when we

first started this that by the time we were done with casting her

foot was really still developing. She was only like 5 pounds when

we started... I don't know if that makes a difference or not. Her

foot was so tiny. I am thinking if we do the casting now and then

when she gets them off that she will be standing and that would help

the foot not turn back in because she will be using it. When she was

so tiny she didn't use it.

>

> She is behind as it is because of being 2 months premature (she is

only 15 pounds as of now at 10 months old) and I am really afraid of

doing the casting and shoes that it will delay her even more but I

am certain that surgery will also. And what if we do the casting and

she wont tolerate the shoes and we have to do surgery anyways... am

I wasting time on the correction? I don't know the answer to that.

We have our appointment with the Ortho next Thursday and I guess we

will have alot of questions for her... and MAYBE do the casting. I

am thinking that I found this website for a reason and it is God's

way of telling me to continue with the casting!!!

> Thank you, thank you , thank you for you listening ear!!

>

> I do hope that I make sense to you...

>

>

>

> Daiga Grady wrote:

>

> ,

>

> Welcome to the board!

>

> I would definitely give the casting and brace a second chance.

> Surgery may sound like a quick fix but as many will tell you, one

> surgery will most often lead to a second surgery and in some

cases, a

> third surgery and beyond. Surgery also leaves scar tissue which

> makes full mobility later on more difficult to achieve.

>

> One question: Did Avery tolerate the brace well during the

initial 3

> month 'full-time' phase? If so, there's no reason to believe that

> she won't be able to tolerate it again a second time. One thing

that

> I found interesting was that Avery's brace wear was reduced to 12

> hours immediately after having been in the brace full-time. I

know

> that there are others on this list who experienced what you did

with

> Avery after having dropped hours so drastically. A quick remedy

was

> to increase the number of hours in the brace and then to drop

hours

> gradually over a period of time.

>

> One of the mom's on this list recently received an email from Dr.

> Ponseti in which he addressed the bracing protocol:

>

> " After 3 months of full time brace wear, we usually gradually wean

> the babies out of the brace, starting with 4 hours a day out for

one

> month, then 8 hours a day out. We try to have the babies wear the

> brace at night and naptime for a total of 16-18 hours and once they

> are walking wear it at least 14 hours. We used to recommend bracing

> continue to age 3, but since we have seen some relapses, we now

> recommend 3 1/2 to 4 years of age.

>

> I.V. Ponseti, M.D. "

>

> This is something that you may want to take into consideration if

you

> decide to retry the casting and brace.

>

> If you have any questions at all, don't hesitate to ask. The

members

> of this group will be more than happy to help!

>

> Daiga and Owen, 02/04/03

> Unilateral LCF, FAB 14/24

>

>

>

>

>

> >

> >

> > Hello to all of you brave families out there...

> > I just wanted to share my story....

> >

> > During my pregnancy I went through several ultrasounds due to

> having

> > twins.... at about week 20 they detected a left club foot in one

of

> > the babies and at about 24 weeks, they confirmed it. They also

> > detected an enlarged lateral ventricle and because of the 2

> findings

> > they had sent us to a genetic counsler and we continued to do

many

> > ultrasounds tracking the ventricle (which didn't change as time

> went

> > on and they thought they were isolated findings... big relief

for

> > us). Due to all of the stress I was under with not knowing if

> > baby " B " would be healthy or not and all of the appointments

that I

> > was balancing and also having a 3 year old (at the time) to take

> > care of.... I went into labor at 31 weeks. I was able to get the

> > shots to help their lungs develop and I delivered at 32 weeks.

> > Delaney was born at 4lbs 16 " (with no complications !!! and

Avery

> > was born 3lbs 10oz and 16 " and had to be on a ventilator for 12

> > hours and also on a low dose of oxygen for a couple of weeks.

Avery

> > was born with the left club foot. The Doctor came to check her

foot

> > out right away and decided to start treatment when she was

released

> > form the NICU (special care nursery). Getting her stabilized was

> > more important. She got her first cast 4 days after she got home

> and

> > had a different cast on every week for 6 weeks and then had the

> > tendonomy~SP. She then had a cast for 2 weeks and her foot

looked

> > great and she started with the " shoes " . She did great wearing

them

> > full time for 3 months. Then the Dr said she could do just night

> > time for 12 hours from then on. Avery decided she liked her

freedom

> > and after 3 night of wearing them she wouldn't cooperate at

ALL!!!

> > She would scream an " ear piercing " scream that would wake up the

> > rest of the family. (If she was the only child MAYBE I could of

> kept

> > her in them). The minute we took them off she stopped so we

tried a

> > few different things to help her but nothing seemed to help. The

Dr

> > changed the degree of the shoes but said she couldn't do

anymore.

> > The foot has started turning in and has pretty much gone back to

> > where it started... she hasn't had the shoes on in months now.

She

> > is 9 months old and we don't feel like we have many options at

this

> > time. The Dr told us the options were to go through castings

again

> > and start over with the shoes or more than likely surgery (which

> she

> > really talked down on... she doesn't want to see that happen but

> the

> > shoes aren't an option...)Avery is very difficult to get to

> > cooperate even now. She is a very light sleeper. She has been

> > through sooo much that I DO NOT want to do surgery but I really

am

> > out of ideas. The only way I could get her to sleep with the

shoes

> > on was on her belly.

> >

> > Does anyone have any helpful information for us....??? We are

going

> > to see the Dr on the 28th and talking about surgery. I also

notice

> > that the leg with the club foot seems to be a tiny bit

shorter...

> > has anyone had any concerns with that before? Is it because of

the

> > bend and once it is corrected it catches up?? The Dr told us

also

> > that the heel bone doesn't " drop " until they are about 2 years

> > old... is that true? Could that be why it seems shorter?

> >

> > Thanks for listening....

> > God Bless all of us....

> >

> > The Ciccione's (Chicago, Il)

> > Rod and

> >

> > Chesney 8.7.00

> > Delaney 6.24.04

> > Avery 6.24.04 left club foot

>

>

>

>

>

>

[Guest guest]

Thank you for that info... it really made us think more about our decision.... I

didn't think we would even consider doing the casting again but I hated the

thought of doing surgery.... we knew it wasn't really the right decision but we

felt it was the only decision but had emailed me to say that doing the

casting won't hurt that we can always do surgery later and that their is a

limited time on doing the casting so when my husband and I read your story we

knew the right decision to make... so thank you sooo much!! It is going to be a

hard road and I am counting on this website to help us make it through and so

far I haven't been let down. I am so thankful to have found you all!!!

If you ever need to talk to anyone about your baby and being a premie... I would

love to chat... that has been a big challenge as it is and with the club foot on

top of that makes it really challenging... not many people understand that!!!

Hundley jenhundley@...> wrote:

Hi ,

I can't offer much advice but maybe a little persuasion to start casting over.

I worked with a gentlemen who was born with a right clubfoot, he's now 45. His

parents didn't know about the Ponseti method then and he went through many

surgeries as a child. He went on to play sports and be a very healthy active

little boy and teenager.

He says now though he has constant pain in his foot. Every morning when he gets

out of bed he says it takes awhile to loosen up his foot from all the scare

tissue. Also, he walks with a limp now because of the constant pain and

irritation. He says he knows it's because of all the scare tissue and has even

of late thought about going in and having another surgery to remove some of the

scare tissue.

I know starting over seems unbearable and the road to reduction seems like a

lifetime but I'd give it one more shot. As scary as it is time does fly by.

When she gets into her shoes again reduce slowly and not all at one; 23/7, 18/7,

16/7, 14 to12/7 that will help her adjust slowly.

Oh, when I was in the hospital I had a nurse who had a little boy born with

clubfeet, he's 8 now and she didn't know about the Ponseti method. Today she

said her 8 yr old is already in constant pain she has to massage his feet every

night before bedtime because of the pain from the many surgeries he's had. She

said he'll have several more before it's all said and done.

I also have a preemie and so far he's doing really well. We did wait until he

was 2 mo. old before treatment though because his feet were just too small

Best of luck to you and you'll be in our thoughts.

valerie ciccione ciccionechix4@...> wrote:

Hello

I am so thankful that I found this group.... I am so confused on what to do! My

husband and I do not want to do surgery but with the way that Avery is, it makes

it very hard to keep her in the shoes... like I had said in my story was that if

she was our only one I think I could of tried harder!! She did do very well with

the shoes when they were full time...she wore them about 23 hours a day and

didn't seem to mind until the day we got the OK to wear only at night... and boy

do I wish that we would of weined her off of them because now I can see why it

makes such a difference. At the time we thought....yes, we can finally get these

off during the day!! She did so good with them that I didn't think anything of

it. When she got them fitted the first time the man had told me that some kids

really fight it and when he put them on she really didn't at that time so I

thought that I had it made and she would do OK with them.

So I do know that doing surgery ISN'T a quick fix and that she may need more of

them and that it could cause her pain in her foot as she gets older so that

makes me second guess what we are to do. I really thought that I was set on

surgery but now after reading just a few responses from people on here it makes

me consider doing the casting again. I am so mad at myself for not doing it

sooner. I really think that she was so little and her foot was so tiny when we

first started this that by the time we were done with casting her foot was

really still developing. She was only like 5 pounds when we started... I don't

know if that makes a difference or not. Her foot was so tiny. I am thinking if

we do the casting now and then when she gets them off that she will be standing

and that would help the foot not turn back in because she will be using it. When

she was so tiny she didn't use it.

She is behind as it is because of being 2 months premature (she is only 15

pounds as of now at 10 months old) and I am really afraid of doing the casting

and shoes that it will delay her even more but I am certain that surgery will

also. And what if we do the casting and she wont tolerate the shoes and we have

to do surgery anyways... am I wasting time on the correction? I don't know the

answer to that. We have our appointment with the Ortho next Thursday and I guess

we will have alot of questions for her... and MAYBE do the casting. I am

thinking that I found this website for a reason and it is God's way of telling

me to continue with the casting!!!

Thank you, thank you , thank you for you listening ear!!

I do hope that I make sense to you...

Daiga Grady daiga.grady@...> wrote:

,

Welcome to the board!

I would definitely give the casting and brace a second chance.

Surgery may sound like a quick fix but as many will tell you, one

surgery will most often lead to a second surgery and in some cases, a

third surgery and beyond. Surgery also leaves scar tissue which

makes full mobility later on more difficult to achieve.

One question: Did Avery tolerate the brace well during the initial 3

month 'full-time' phase? If so, there's no reason to believe that

she won't be able to tolerate it again a second time. One thing that

I found interesting was that Avery's brace wear was reduced to 12

hours immediately after having been in the brace full-time. I know

that there are others on this list who experienced what you did with

Avery after having dropped hours so drastically. A quick remedy was

to increase the number of hours in the brace and then to drop hours

gradually over a period of time.

One of the mom's on this list recently received an email from Dr.

Ponseti in which he addressed the bracing protocol:

" After 3 months of full time brace wear, we usually gradually wean

the babies out of the brace, starting with 4 hours a day out for one

month, then 8 hours a day out. We try to have the babies wear the

brace at night and naptime for a total of 16-18 hours and once they

are walking wear it at least 14 hours. We used to recommend bracing

continue to age 3, but since we have seen some relapses, we now

recommend 3 1/2 to 4 years of age.

I.V. Ponseti, M.D. "

This is something that you may want to take into consideration if you

decide to retry the casting and brace.

If you have any questions at all, don't hesitate to ask. The members

of this group will be more than happy to help!

Daiga and Owen, 02/04/03

Unilateral LCF, FAB 14/24

>

>

> Hello to all of you brave families out there...

> I just wanted to share my story....

>

> During my pregnancy I went through several ultrasounds due to

having

> twins.... at about week 20 they detected a left club foot in one of

> the babies and at about 24 weeks, they confirmed it. They also

> detected an enlarged lateral ventricle and because of the 2

findings

> they had sent us to a genetic counsler and we continued to do many

> ultrasounds tracking the ventricle (which didn't change as time

went

> on and they thought they were isolated findings... big relief for

> us). Due to all of the stress I was under with not knowing if

> baby " B " would be healthy or not and all of the appointments that I

> was balancing and also having a 3 year old (at the time) to take

> care of.... I went into labor at 31 weeks. I was able to get the

> shots to help their lungs develop and I delivered at 32 weeks.

> Delaney was born at 4lbs 16 " (with no complications !!! and Avery

> was born 3lbs 10oz and 16 " and had to be on a ventilator for 12

> hours and also on a low dose of oxygen for a couple of weeks. Avery

> was born with the left club foot. The Doctor came to check her foot

> out right away and decided to start treatment when she was released

> form the NICU (special care nursery). Getting her stabilized was

> more important. She got her first cast 4 days after she got home

and

> had a different cast on every week for 6 weeks and then had the

> tendonomy~SP. She then had a cast for 2 weeks and her foot looked

> great and she started with the " shoes " . She did great wearing them

> full time for 3 months. Then the Dr said she could do just night

> time for 12 hours from then on. Avery decided she liked her freedom

> and after 3 night of wearing them she wouldn't cooperate at ALL!!!

> She would scream an " ear piercing " scream that would wake up the

> rest of the family. (If she was the only child MAYBE I could of

kept

> her in them). The minute we took them off she stopped so we tried a

> few different things to help her but nothing seemed to help. The Dr

> changed the degree of the shoes but said she couldn't do anymore.

> The foot has started turning in and has pretty much gone back to

> where it started... she hasn't had the shoes on in months now. She

> is 9 months old and we don't feel like we have many options at this

> time. The Dr told us the options were to go through castings again

> and start over with the shoes or more than likely surgery (which

she

> really talked down on... she doesn't want to see that happen but

the

> shoes aren't an option...)Avery is very difficult to get to

> cooperate even now. She is a very light sleeper. She has been

> through sooo much that I DO NOT want to do surgery but I really am

> out of ideas. The only way I could get her to sleep with the shoes

> on was on her belly.

>

> Does anyone have any helpful information for us....??? We are going

> to see the Dr on the 28th and talking about surgery. I also notice

> that the leg with the club foot seems to be a tiny bit shorter...

> has anyone had any concerns with that before? Is it because of the

> bend and once it is corrected it catches up?? The Dr told us also

> that the heel bone doesn't " drop " until they are about 2 years

> old... is that true? Could that be why it seems shorter?

>

> Thanks for listening....

> God Bless all of us....

>

> The Ciccione's (Chicago, Il)

> Rod and

>

> Chesney 8.7.00

> Delaney 6.24.04

> Avery 6.24.04 left club foot

[Guest guest]

,

I can chime in too and tell you that surgery can lead to a lifetime of

painful feet. I have a right clubfoot, I had multiple surgeries as a

child. I was doing very well until I hit my 30's then I started

having pain in my foot. Now I have pain and swelling almost all the

time; I understand it is mainly from the scar tissue left behind from

the surgery. While it may seem daunting to start over again I can

tell you it could make all the difference to your daughter, especially

when she is an adult. Again, I would also add that if your Dr.

reduced your hours straight from 23 to nights only this is a red flag.

If you choose to stick with this Dr. (although I believe it would be

a good idea to get a 2nd opinion, wondering if her feet were ever

fully corrected), I would tell him/her that you intend to follow Dr.

Ponseti's protocol and do the hour reduction gradually. There have

been several parents in the group whose children's hours were reduced

like yours were, when they went back to 23 hours a day and then

gradually reduced, the children adjusted perfectly.

Good luck!

Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs brace 16-18/7)

> >

> >

> > Hello to all of you brave families out there...

> > I just wanted to share my story....

> >

> > During my pregnancy I went through several ultrasounds due to

> having

> > twins.... at about week 20 they detected a left club foot in one of

> > the babies and at about 24 weeks, they confirmed it. They also

> > detected an enlarged lateral ventricle and because of the 2

> findings

> > they had sent us to a genetic counsler and we continued to do many

> > ultrasounds tracking the ventricle (which didn't change as time

> went

> > on and they thought they were isolated findings... big relief for

> > us). Due to all of the stress I was under with not knowing if

> > baby " B " would be healthy or not and all of the appointments that I

> > was balancing and also having a 3 year old (at the time) to take

> > care of.... I went into labor at 31 weeks. I was able to get the

> > shots to help their lungs develop and I delivered at 32 weeks.

> > Delaney was born at 4lbs 16 " (with no complications !!! and Avery

> > was born 3lbs 10oz and 16 " and had to be on a ventilator for 12

> > hours and also on a low dose of oxygen for a couple of weeks. Avery

> > was born with the left club foot. The Doctor came to check her foot

> > out right away and decided to start treatment when she was released

> > form the NICU (special care nursery). Getting her stabilized was

> > more important. She got her first cast 4 days after she got home

> and

> > had a different cast on every week for 6 weeks and then had the

> > tendonomy~SP. She then had a cast for 2 weeks and her foot looked

> > great and she started with the " shoes " . She did great wearing them

> > full time for 3 months. Then the Dr said she could do just night

> > time for 12 hours from then on. Avery decided she liked her freedom

> > and after 3 night of wearing them she wouldn't cooperate at ALL!!!

> > She would scream an " ear piercing " scream that would wake up the

> > rest of the family. (If she was the only child MAYBE I could of

> kept

> > her in them). The minute we took them off she stopped so we tried a

> > few different things to help her but nothing seemed to help. The Dr

> > changed the degree of the shoes but said she couldn't do anymore.

> > The foot has started turning in and has pretty much gone back to

> > where it started... she hasn't had the shoes on in months now. She

> > is 9 months old and we don't feel like we have many options at this

> > time. The Dr told us the options were to go through castings again

> > and start over with the shoes or more than likely surgery (which

> she

> > really talked down on... she doesn't want to see that happen but

> the

> > shoes aren't an option...)Avery is very difficult to get to

> > cooperate even now. She is a very light sleeper. She has been

> > through sooo much that I DO NOT want to do surgery but I really am

> > out of ideas. The only way I could get her to sleep with the shoes

> > on was on her belly.

> >

> > Does anyone have any helpful information for us....??? We are going

> > to see the Dr on the 28th and talking about surgery. I also notice

> > that the leg with the club foot seems to be a tiny bit shorter...

> > has anyone had any concerns with that before? Is it because of the

> > bend and once it is corrected it catches up?? The Dr told us also

> > that the heel bone doesn't " drop " until they are about 2 years

> > old... is that true? Could that be why it seems shorter?

> >

> > Thanks for listening....

> > God Bless all of us....

> >

> > The Ciccione's (Chicago, Il)

> > Rod and

> >

> > Chesney 8.7.00

> > Delaney 6.24.04

> > Avery 6.24.04 left club foot

>

>

>

>

>

>

[Guest guest]

Kassia,

I wish I could be really specific and tell you the names of the actual

procedures I had done but I honestly don't know that information.

It's funny, I never thought to even ask my mom, and she probably

doesn't remember now, although she may have it documented somewhere.

I do know my surgeries were very invasive. They actually moved bones

and several tendons. I am actually in the process of trying to track

down my medical records from those surgeries, but it's amazing how

difficult it can be when the doctor has not only moved his office 3

times since then but has also retired.

Sorry not to be more helpful.

>

> ,

>

> Do you mind my asking what kind of surgeries you had as a child? My

son

> was born with a left clubfoot that relapsed at age 2 or so...he

> had ATTT surgery last year (at age 3) and now our dr is recommending

> that he have the ATTT redone because the tendon seems to have slipped

> and now isn't strong enough. We're hoping to avoid a second surgery by

> strengthening his foot- we go back to see Dr Dietz the end of June and

> will make the decision then. In the meantime we've got Jake doing lots

> of exercises.

>

> Anyways, Dr Dietz told us that people who have ATTT surgery done as a

> child don't have painful feet as adults, because the surgery doesn't

> affect the joint capsules?? I was wondering what kind of surgeries you

> had done and if you have any insights. Also any questions we should

ask

> Dr Dietz?

>

> Thanks,

> Kassia

> 3/22/01 (Lt clubfoot, ATTT surgery April 2004)

> and 11/22/02