Re: Re: First time posting...

[Guest guest]

Our son was in AFO " S for a little bit. I found that it had helped with his

walking and running. With out them he would trip all the time. Our new doctor

says her dosen't need them now. I feel that his foot would be better if we would

have kept the Afo

bri

littleman1013 wrote:

I have to be honest and say that I didn't investigate as thoroughly as many of

you did

before having my baby... I know someone whose son was treated by the doc we

chose with

excellent results, so I went with him. I had heard about Dr. Lemke, but she is

just so very

young that I preferred to go with the doc we're with because he's older and has

many more

years of experience treating club feet.

I'm starting to worry about the course of treatment after this cast comes off,

though. My

husband also has a club foot, as I posted earlier, and he remembers wearing the

DBB -- or

as he remembers, the shoes attached to the bar-- for many years. I'm almost

positive that

the doc we chose does not employ that method, and I don't know what his overall

success

rate is with the kids as they get older.

You said that even if we don't obtain the results we're striving for, we could

backtrack and

start over, with the exception of surgery. What about our son's already having

an achilles

tenotomy?

Are there any parents who did use the AKFO or AFO and obtained results that

lasted?

What is your recommendation, ee, as far as how to proceed now? What would

you

do if in our shoes? As far as I can tell, the doctor is using his own version

of the Ponseti

method. We have had 6 casts so far, including the one we're in now post

tenotomy, and

each looks almost identical to those shown in the sequential Ponseti

photographs... each

cast has turned the foot outward to the same approx degree as the Ponseti casts

would,

and they have been changed at either 7 or 10 day increments, with 2 short breaks

to let

the skin of my son's leg heal. (once for one week and once for 4 days)

I'd happily entertain any input the experienced mommies (and daddies) have for

us! My

son is currently only 11 weeks old, so we're still extremely young and pliable,

if you will!

Stacee

P.S. -- I may very well give you a call next week, if you really don't

mind. I'd love

to chat with someone who's going thru the same things!!

>

> Hi Stacee, good to have you on board.

>

> Not sure what I can say about your baby's treatment as it doesn't sound like

Ponseti

Method to me. Sounds like he's had quite a few casts, probably more than the

Ponseti

Method would have required (average of 5 casts, five to seven days between

castings). My

last son was treated by Dr. Ponseti in Iowa - he wore casts for 25 days

pre-tenotomy, then

17 days post-tenotomy (42 days total). He's been wearing the FAB since then and

has

completely normal feet.

>

> Have you been satisfied with all the results so far though? Typically a

child doesn't

need 7 weeks to heal from a tenotomy, only 3, and often they out grow that cast

and only

go 2 weeks with excellent results.

>

> Are you interested in hearing more about the Ponseti Method or seeking a 2nd

opinon

from a P.M. doctor?

>

> Typically speaking AFO and AKFO style braces have had little success in

maintaing the

club foot correction after the casting phase often resulting in relapses, thus

you'll notice

all of us here have babies that wear what is called the Foot Abductin Brace

(FAB, often

called a DBB) which is shoes connected to a bar as that has been proven to

maintain the

correction as the child grows.

>

> Anyway, I won't hound you - but if there is every any question regarding your

childs

treatment/progress, etc., please don't hesitate to ask and know if he does not

respond to

your current treatment methods, he's young enough to back up and start over with

the

Ponseti Method before any surgical cures are attempted. Once he's operated on

though

you'll be stuck wtih those results, either good or bad (usually bad).

>

> If you haven't done so already I urge you to visit our Files and Links for

lots of really

great information about CF in general and treatments, etc.

>

> Good luck,

> shawnee

> First time posting...

>

>

> I have been reading over many of the previous posts and thought I'd like to

join in ...

My

> third child was born 9/24/05 with a right club foot and has been

sequentially casted

since

> he was 2 days old. He just had an achilles tenotomy on Dec 6th and is

currently in the

> cast for approx 4 weeks, then to another cast for ~3 more weeks before

moving to the

> AKFO.

>

> My husband also has a right club foot, but was never treated the way kids

are today.

He's

> fully functional and you'd never know he had a club foot unless you looked

closely. :-)

>

> I'm completely new to this process, and from what I have seen on the boards,

most of

the

> kids here have bilateral clubs, so I'm not sure if the treatment post

tenotomy is the

same

> for unilateral vs bilateral?

>

> It's my understanding that our ortho in Arlington Heights, IL will be

putting our son

into

> an AKFO as soon as he's done with approx 7 weeks of casting post surgery and

he'll be

in

> that orthotic 23/7 until he's walking, at which point I'm foggy on the

course of

treatment.

>

> I noticed another poster is seeing Dr Lemke in Geneva--- Would love to chat

with you

> directly if you see this message! We live in Sugar Grove, but opted to see

Dr Marty in

> Arlington Heights as he came highly recommended by a friend who's son was

treated

for

> bilateral foot issues (not club foot.)

>

> Anyway, I hope you all don't mind my jumping in and I apologize if I ask

questions that

> have been asked a thousand times before!! :-)

>

> Stacee

>

>

>

>

>

>

>

>

[Guest guest]

Our son was in AFO " S for a little bit. I found that it had helped with his

walking and running. With out them he would trip all the time. Our new doctor

says her dosen't need them now. I feel that his foot would be better if we would

have kept the Afo

bri

littleman1013 wrote:

I have to be honest and say that I didn't investigate as thoroughly as many of

you did

before having my baby... I know someone whose son was treated by the doc we

chose with

excellent results, so I went with him. I had heard about Dr. Lemke, but she is

just so very

young that I preferred to go with the doc we're with because he's older and has

many more

years of experience treating club feet.

I'm starting to worry about the course of treatment after this cast comes off,

though. My

husband also has a club foot, as I posted earlier, and he remembers wearing the

DBB -- or

as he remembers, the shoes attached to the bar-- for many years. I'm almost

positive that

the doc we chose does not employ that method, and I don't know what his overall

success

rate is with the kids as they get older.

You said that even if we don't obtain the results we're striving for, we could

backtrack and

start over, with the exception of surgery. What about our son's already having

an achilles

tenotomy?

Are there any parents who did use the AKFO or AFO and obtained results that

lasted?

What is your recommendation, ee, as far as how to proceed now? What would

you

do if in our shoes? As far as I can tell, the doctor is using his own version

of the Ponseti

method. We have had 6 casts so far, including the one we're in now post

tenotomy, and

each looks almost identical to those shown in the sequential Ponseti

photographs... each

cast has turned the foot outward to the same approx degree as the Ponseti casts

would,

and they have been changed at either 7 or 10 day increments, with 2 short breaks

to let

the skin of my son's leg heal. (once for one week and once for 4 days)

I'd happily entertain any input the experienced mommies (and daddies) have for

us! My

son is currently only 11 weeks old, so we're still extremely young and pliable,

if you will!

Stacee

P.S. -- I may very well give you a call next week, if you really don't

mind. I'd love

to chat with someone who's going thru the same things!!

>

> Hi Stacee, good to have you on board.

>

> Not sure what I can say about your baby's treatment as it doesn't sound like

Ponseti

Method to me. Sounds like he's had quite a few casts, probably more than the

Ponseti

Method would have required (average of 5 casts, five to seven days between

castings). My

last son was treated by Dr. Ponseti in Iowa - he wore casts for 25 days

pre-tenotomy, then

17 days post-tenotomy (42 days total). He's been wearing the FAB since then and

has

completely normal feet.

>

> Have you been satisfied with all the results so far though? Typically a

child doesn't

need 7 weeks to heal from a tenotomy, only 3, and often they out grow that cast

and only

go 2 weeks with excellent results.

>

> Are you interested in hearing more about the Ponseti Method or seeking a 2nd

opinon

from a P.M. doctor?

>

> Typically speaking AFO and AKFO style braces have had little success in

maintaing the

club foot correction after the casting phase often resulting in relapses, thus

you'll notice

all of us here have babies that wear what is called the Foot Abductin Brace

(FAB, often

called a DBB) which is shoes connected to a bar as that has been proven to

maintain the

correction as the child grows.

>

> Anyway, I won't hound you - but if there is every any question regarding your

childs

treatment/progress, etc., please don't hesitate to ask and know if he does not

respond to

your current treatment methods, he's young enough to back up and start over with

the

Ponseti Method before any surgical cures are attempted. Once he's operated on

though

you'll be stuck wtih those results, either good or bad (usually bad).

>

> If you haven't done so already I urge you to visit our Files and Links for

lots of really

great information about CF in general and treatments, etc.

>

> Good luck,

> shawnee

> First time posting...

>

>

> I have been reading over many of the previous posts and thought I'd like to

join in ...

My

> third child was born 9/24/05 with a right club foot and has been

sequentially casted

since

> he was 2 days old. He just had an achilles tenotomy on Dec 6th and is

currently in the

> cast for approx 4 weeks, then to another cast for ~3 more weeks before

moving to the

> AKFO.

>

> My husband also has a right club foot, but was never treated the way kids

are today.

He's

> fully functional and you'd never know he had a club foot unless you looked

closely. :-)

>

> I'm completely new to this process, and from what I have seen on the boards,

most of

the

> kids here have bilateral clubs, so I'm not sure if the treatment post

tenotomy is the

same

> for unilateral vs bilateral?

>

> It's my understanding that our ortho in Arlington Heights, IL will be

putting our son

into

> an AKFO as soon as he's done with approx 7 weeks of casting post surgery and

he'll be

in

> that orthotic 23/7 until he's walking, at which point I'm foggy on the

course of

treatment.

>

> I noticed another poster is seeing Dr Lemke in Geneva--- Would love to chat

with you

> directly if you see this message! We live in Sugar Grove, but opted to see

Dr Marty in

> Arlington Heights as he came highly recommended by a friend who's son was

treated

for

> bilateral foot issues (not club foot.)

>

> Anyway, I hope you all don't mind my jumping in and I apologize if I ask

questions that

> have been asked a thousand times before!! :-)

>

> Stacee

>

>

>

>

>

>

>

>

[Guest guest]

Stacee

I don't mind at all that you call me... I really hope that you give Dr. Lemke

a call.... I think you would be very happy with her... she is young but has

trained with Dr. Ponsetti and seems to follow the method... I was a little

hesitant when I realized how young she is but she is very confident and very

professional.... she does seem to know what she is doing... like I said we had a

lilttle problem in the begining and that is what brought me to this support

group....

Avery had started treatment with a different cast on every week for 6 weeks

then the tenotomy... the casting went well... she seemed to do fine, no problem

with slipping, no soars, no swelling... she did the full leg casts and then when

we did the tenotomy she did one more cast for 3 weeks and her foot looked

great!!!.... so we started with the full time shoes (23/7) for 3 months and did

well... THEN... the one problem that happened was that she had us drop our hours

too fast from what I can tell now.... we of course were excited to drop down

hours so we did, well if I could go back now I would have waited and done it

gradually.... because when she went down too fast she started to fuss after 3

nights of that.... she wouldn't tolerate them anymore.... we were very

frustrated so we went back and forth trying to find out what the problem was...

so we eventually took them off for good and thought that our only option was

surgery.... YIKES.... I am so forever grateful for finding this

support group... without these guys on here my little girl would have had

surgery... we didn't think there was another option... but this is where Dr.

Lemke comes in.... she didn't want us to do surgery but we really didn't know

what else to do... we found out a couple of months later that she has really bad

acid reflux and that is why she wasn't tolerating the shoes...it had nothing to

do with the shoes ... it was very frusterating.....but through out all of that

Dr. Lemke was trying to keep us putting the shoes on her, we just couldn't do it

anymore.... but had I know how much damage surgery would cause I would have

never considered it... all in all it was the reflux that caused all of the

problems and unfortunatley she had a relapse and that is when I posted and you

all recommended that I start the treatment over again... and as hard as I

thought it was going to be it went so fast and her foot couldn't be more

perfect.... she is at night time wear and we haven't had a single

problem since we started over again....YEAH!!!

As for the tenotomy..... we did have to do another one and it turned out just

fine.... I am not sure what the recommendations are for that but it our

situation it turned out great... I didn't want to do it again but we did and

couldn't be happier....

I hope to hear from you.... I will also leave my email if you want to do that

also!!

Best of luck to you....

I hope this all makes sense....so much info, right!!!

littleman1013 wrote:

I have to be honest and say that I didn't investigate as thoroughly as many of

you did

before having my baby... I know someone whose son was treated by the doc we

chose with

excellent results, so I went with him. I had heard about Dr. Lemke, but she is

just so very

young that I preferred to go with the doc we're with because he's older and has

many more

years of experience treating club feet.

I'm starting to worry about the course of treatment after this cast comes off,

though. My

husband also has a club foot, as I posted earlier, and he remembers wearing the

DBB -- or

as he remembers, the shoes attached to the bar-- for many years. I'm almost

positive that

the doc we chose does not employ that method, and I don't know what his overall

success

rate is with the kids as they get older.

You said that even if we don't obtain the results we're striving for, we could

backtrack and

start over, with the exception of surgery. What about our son's already having

an achilles

tenotomy?

Are there any parents who did use the AKFO or AFO and obtained results that

lasted?

What is your recommendation, ee, as far as how to proceed now? What would

you

do if in our shoes? As far as I can tell, the doctor is using his own version

of the Ponseti

method. We have had 6 casts so far, including the one we're in now post

tenotomy, and

each looks almost identical to those shown in the sequential Ponseti

photographs... each

cast has turned the foot outward to the same approx degree as the Ponseti casts

would,

and they have been changed at either 7 or 10 day increments, with 2 short breaks

to let

the skin of my son's leg heal. (once for one week and once for 4 days)

I'd happily entertain any input the experienced mommies (and daddies) have for

us! My

son is currently only 11 weeks old, so we're still extremely young and pliable,

if you will!

Stacee

P.S. -- I may very well give you a call next week, if you really don't

mind. I'd love

to chat with someone who's going thru the same things!!

>

> Hi Stacee, good to have you on board.

>

> Not sure what I can say about your baby's treatment as it doesn't sound like

Ponseti

Method to me. Sounds like he's had quite a few casts, probably more than the

Ponseti

Method would have required (average of 5 casts, five to seven days between

castings). My

last son was treated by Dr. Ponseti in Iowa - he wore casts for 25 days

pre-tenotomy, then

17 days post-tenotomy (42 days total). He's been wearing the FAB since then and

has

completely normal feet.

>

> Have you been satisfied with all the results so far though? Typically a

child doesn't

need 7 weeks to heal from a tenotomy, only 3, and often they out grow that cast

and only

go 2 weeks with excellent results.

>

> Are you interested in hearing more about the Ponseti Method or seeking a 2nd

opinon

from a P.M. doctor?

>

> Typically speaking AFO and AKFO style braces have had little success in

maintaing the

club foot correction after the casting phase often resulting in relapses, thus

you'll notice

all of us here have babies that wear what is called the Foot Abductin Brace

(FAB, often

called a DBB) which is shoes connected to a bar as that has been proven to

maintain the

correction as the child grows.

>

> Anyway, I won't hound you - but if there is every any question regarding your

childs

treatment/progress, etc., please don't hesitate to ask and know if he does not

respond to

your current treatment methods, he's young enough to back up and start over with

the

Ponseti Method before any surgical cures are attempted. Once he's operated on

though

you'll be stuck wtih those results, either good or bad (usually bad).

>

> If you haven't done so already I urge you to visit our Files and Links for

lots of really

great information about CF in general and treatments, etc.

>

> Good luck,

> shawnee

> First time posting...

>

>

> I have been reading over many of the previous posts and thought I'd like to

join in ...

My

> third child was born 9/24/05 with a right club foot and has been

sequentially casted

since

> he was 2 days old. He just had an achilles tenotomy on Dec 6th and is

currently in the

> cast for approx 4 weeks, then to another cast for ~3 more weeks before

moving to the

> AKFO.

>

> My husband also has a right club foot, but was never treated the way kids

are today.

He's

> fully functional and you'd never know he had a club foot unless you looked

closely. :-)

>

> I'm completely new to this process, and from what I have seen on the boards,

most of

the

> kids here have bilateral clubs, so I'm not sure if the treatment post

tenotomy is the

same

> for unilateral vs bilateral?

>

> It's my understanding that our ortho in Arlington Heights, IL will be

putting our son

into

> an AKFO as soon as he's done with approx 7 weeks of casting post surgery and

he'll be

in

> that orthotic 23/7 until he's walking, at which point I'm foggy on the

course of

treatment.

>

> I noticed another poster is seeing Dr Lemke in Geneva--- Would love to chat

with you

> directly if you see this message! We live in Sugar Grove, but opted to see

Dr Marty in

> Arlington Heights as he came highly recommended by a friend who's son was

treated

for

> bilateral foot issues (not club foot.)

>

> Anyway, I hope you all don't mind my jumping in and I apologize if I ask

questions that

> have been asked a thousand times before!! :-)

>

> Stacee

>

>

>

>

>

>

>

>

[Guest guest]

Almost all cf babies end up having the tenotomy - that's a really common thing

to do even in the Ponseti Method, so unless it was some weird radical form of

tenotomy, I doubt it would have any impact on changing courses of treatment.

I think initially a lot of parents are freaked out by the idea of wearing a FAB

because the course of treatment sounds so long and horrible - up to around age 4

years old. But in the scheme of things, it's not nearly as bad as it sounds.

The child wears it full-time initially for a while during infancy, but the time

gradually decreases until pretty soon you're only looking at " bed time " ...

about 14 hours a day. I say this to new parents a lot but truthfully by that

point the FAB becomes a simple extension of the child's pajamas and bed time

routine. Lots of kids become so accustomed to it they won't go to bed with out

it. And someone else put it very well when they said the FAB becomes the

child's " Normal " . They don't know better, so it's normal to them, it's all

they'd ever known. They roll with it, crawl, sit up and even walk in many cases

(walk with it on, I mean). I think you said your husband wore this and he has

really good feet? That might be a clue.

See in the beginning Stacee I didn't do any research either. My oldest was born

with CF and I didn't know a thing about it until it was very nearly too late in

his treatment for any hope of correction. I did finally begin my own education

through this group and thank God for that!

Then I had my 2nd child who also had bilateral club feet - but by then I knew

what to do and drove him directly to Iowa for help.

The difference in the two boys is amazing, I cannot stress enough the difference

between the feet on them.

And now you'll think I'm just making things up but I'm 28 weeks preg. with my

3rd child and ultrasound has confirmed he too will have bilateral club feet!

LOL! Aaahhhh! Ya, some people get all the breaks but evidently I'm not one of

them, eh?

You ask what would I do in your shoes (ha) - any time a parents is seeing a

non-ponseti care giver....or a modified ponseti care giver such as your own

.....I strongly recommend seeking a 2nd opinion from a true dyed in the wood

Ponseti Doc who doesn't modify the method. The 95% non-surgical success rate of

a true Ponseti doctor is based on not using modifications. It's a real simple

process that just doesn't need changed or fixed. If the doc isn't getting the

results he needs in 5 to 7 days of castings, he's doing something not quite

right. Wearing one for 10 days is simply too long and should be un-necessary.

Sometimes I get leery of the new docs coming on board because they lack

experience even if they are trained - but I shouldn't do that. I guess it's

because my oldest son's doc came highly recommended and said he'd worked on lots

of clubbed feet too but I ended up with sucky results through him.

Anyway,sorry I'm long winded. Ya, call if she is near by to you and

compare notes there. And maybe start asking your dr. some of the harder

questions like why the AFO thing instead of teh FAB thing, what his long term

success rates are, how many kids are great, how many of them relapsed and all

that stuff.

We have found on this group a lot of doctors not using the FAB because frankly,

they pretty much don't know how or understand the significance of it. They also

blame " Parents don't like it " as a reason not to prescribe it. Many leave it up

to the parents just tossing them out to sea to figure it out on their own how

long to wear it and how so those poor kids often suffer a lot. Some have said

" Wear it as long as the kid will tolerate it " which generally amounts to a

couple hours on the first day...it can be a mess but it doesn't have to be a

mess is my point.

I'm not sorry my baby wears it, I'm sorry his big brother DIDN " T wear it.

s.

First time posting...

>

>

> I have been reading over many of the previous posts and thought I'd like

to join in ...

My

> third child was born 9/24/05 with a right club foot and has been

sequentially casted

since

> he was 2 days old. He just had an achilles tenotomy on Dec 6th and is

currently in the

> cast for approx 4 weeks, then to another cast for ~3 more weeks before

moving to the

> AKFO.

>

> My husband also has a right club foot, but was never treated the way kids

are today.

He's

> fully functional and you'd never know he had a club foot unless you looked

closely. :-)

>

> I'm completely new to this process, and from what I have seen on the

boards, most of

the

> kids here have bilateral clubs, so I'm not sure if the treatment post

tenotomy is the

same

> for unilateral vs bilateral?

>

> It's my understanding that our ortho in Arlington Heights, IL will be

putting our son

into

> an AKFO as soon as he's done with approx 7 weeks of casting post surgery

and he'll be

in

> that orthotic 23/7 until he's walking, at which point I'm foggy on the

course of

treatment.

>

> I noticed another poster is seeing Dr Lemke in Geneva--- Would love to

chat with you

> directly if you see this message! We live in Sugar Grove, but opted to

see Dr Marty in

> Arlington Heights as he came highly recommended by a friend who's son was

treated

for

> bilateral foot issues (not club foot.)

>

> Anyway, I hope you all don't mind my jumping in and I apologize if I ask

questions that

> have been asked a thousand times before!! :-)

>

> Stacee

>

>

>

>

>

>

>

>

[Guest guest]

wore AFO's too - and yes they did help him walk but in our case it was

because his feet were so screwed up in to a ball he couldn't walk with out them

to hold his feet straight.

All this was pre-Ponseti.

s.

First time posting...

>

>

> I have been reading over many of the previous posts and thought I'd like

to join in ...

My

> third child was born 9/24/05 with a right club foot and has been

sequentially casted

since

> he was 2 days old. He just had an achilles tenotomy on Dec 6th and is

currently in the

> cast for approx 4 weeks, then to another cast for ~3 more weeks before

moving to the

> AKFO.

>

> My husband also has a right club foot, but was never treated the way kids

are today.

He's

> fully functional and you'd never know he had a club foot unless you looked

closely. :-)

>

> I'm completely new to this process, and from what I have seen on the

boards, most of

the

> kids here have bilateral clubs, so I'm not sure if the treatment post

tenotomy is the

same

> for unilateral vs bilateral?

>

> It's my understanding that our ortho in Arlington Heights, IL will be

putting our son

into

> an AKFO as soon as he's done with approx 7 weeks of casting post surgery

and he'll be

in

> that orthotic 23/7 until he's walking, at which point I'm foggy on the

course of

treatment.

>

> I noticed another poster is seeing Dr Lemke in Geneva--- Would love to

chat with you

> directly if you see this message! We live in Sugar Grove, but opted to

see Dr Marty in

> Arlington Heights as he came highly recommended by a friend who's son was

treated

for

> bilateral foot issues (not club foot.)

>

> Anyway, I hope you all don't mind my jumping in and I apologize if I ask

questions that

> have been asked a thousand times before!! :-)

>

> Stacee

>

>

>

>

>

>

>

>

[Guest guest]

You made a good point that often the baby being upset isn't due to the

cf treatment at all but because the cast or FAB is so obvious, that's what we

immediately blame the crying on! I'm so glad your story has a happy ending!

s

First time posting...

>

>

> I have been reading over many of the previous posts and thought I'd like

to join in ...

My

> third child was born 9/24/05 with a right club foot and has been

sequentially casted

since

> he was 2 days old. He just had an achilles tenotomy on Dec 6th and is

currently in the

> cast for approx 4 weeks, then to another cast for ~3 more weeks before

moving to the

> AKFO.

>

> My husband also has a right club foot, but was never treated the way kids

are today.

He's

> fully functional and you'd never know he had a club foot unless you looked

closely. :-)

>

> I'm completely new to this process, and from what I have seen on the

boards, most of

the

> kids here have bilateral clubs, so I'm not sure if the treatment post

tenotomy is the

same

> for unilateral vs bilateral?

>

> It's my understanding that our ortho in Arlington Heights, IL will be

putting our son

into

> an AKFO as soon as he's done with approx 7 weeks of casting post surgery

and he'll be

in

> that orthotic 23/7 until he's walking, at which point I'm foggy on the

course of

treatment.

>

> I noticed another poster is seeing Dr Lemke in Geneva--- Would love to

chat with you

> directly if you see this message! We live in Sugar Grove, but opted to

see Dr Marty in

> Arlington Heights as he came highly recommended by a friend who's son was

treated

for

> bilateral foot issues (not club foot.)

>

> Anyway, I hope you all don't mind my jumping in and I apologize if I ask

questions that

> have been asked a thousand times before!! :-)

>

> Stacee

>

>

>

>

>

>

>

>

[Guest guest]

Hi Stacee,

It sounds to me like your doctor is using a modified

version of the Ponseti method. 6 casts sounds fine

(providing they were full-length casts) but they

didn't need to be left on for 10 days, and having

breaks is usually not a good thing since the feet

relapse meanwhile. And the post-tenotomy cast is

usually left on for only 3 weeks.

If your doctor has only modified the lengths of casts

but not the actual manipulations then he might still

have corrected your son's feet properly though. The

feet should look virtually perfect with a good range

of motion. You could always send Dr Ponseti some

pictures and ask his opinion, or get another second

opinion on this. If it turns out that the feet are

not 100% corrected and if the only surgery your son

had was the tenotomy (cutting of the achilles tendon)

then you can always start again from scratch with a

better doctor.

As to the brace to be worn after the feet are

corrected, the Ponseti method only uses the DBB (= FAB

= boots on a bar). I think Dr Ponseti has tried the

AFO several years ago but found that they were pretty

useless in preventing a relapse (note that this might

be different for surgically corrected feet). Is the

AKFO the same as the KAFO? I've heard of the KAFO

before (knee-ankle-foot orthosis I think) and

apparently it does hold the correction since it

involves having the knee bent (like the casts) but it

causes other problems since neither the knee nor the

ankle can be moved in them and it causes those tendons

to contract. This sounds especially bad to me if your

doctor wants to keep your son in them full-time until

he can walk (and I wonder how he's supposed to learn

to walk like that to be honest...).

In the Ponseti method the DBB is worn full-time for 3

months and then gradually less and less until it's

down to night-time only by the time they can walk

until they are 4 or 5 years old. I can say from my

experience that this doesn't have any impact on the

child's development at all. I have 3-year-old twins,

one with a clubfoot who's still wearing the DBB at

night, and one with normal feet, and both have reached

all their milestones (eg rolling over, sitting up,

crawling, standing, walking) at the same time. And

looking at them running and jumping you wouldn't know

there was ever anything wrong with one of them.

Hope this helps at all,

with (3y)

and Alister (3y, RCF, Ponseti method, UK)

--- littleman1013 wrote:

> I have to be honest and say that I didn't

> investigate as thoroughly as many of you did

> before having my baby... I know someone whose son

> was treated by the doc we chose with

> excellent results, so I went with him. I had heard

> about Dr. Lemke, but she is just so very

> young that I preferred to go with the doc we're with

> because he's older and has many more

> years of experience treating club feet.

>

> I'm starting to worry about the course of treatment

> after this cast comes off, though. My

> husband also has a club foot, as I posted earlier,

> and he remembers wearing the DBB -- or

> as he remembers, the shoes attached to the bar-- for

> many years. I'm almost positive that

> the doc we chose does not employ that method, and I

> don't know what his overall success

> rate is with the kids as they get older.

>

> You said that even if we don't obtain the results

> we're striving for, we could backtrack and

> start over, with the exception of surgery. What

> about our son's already having an achilles

> tenotomy?

>

> Are there any parents who did use the AKFO or AFO

> and obtained results that lasted?

> What is your recommendation, ee, as far as how

> to proceed now? What would you

> do if in our shoes? As far as I can tell, the

> doctor is using his own version of the Ponseti

> method. We have had 6 casts so far, including the

> one we're in now post tenotomy, and

> each looks almost identical to those shown in the

> sequential Ponseti photographs... each

> cast has turned the foot outward to the same approx

> degree as the Ponseti casts would,

> and they have been changed at either 7 or 10 day

> increments, with 2 short breaks to let

> the skin of my son's leg heal. (once for one week

> and once for 4 days)

>

> I'd happily entertain any input the experienced

> mommies (and daddies) have for us! My

> son is currently only 11 weeks old, so we're still

> extremely young and pliable, if you will!

>

> Stacee

>

> P.S. -- I may very well give you a call next

> week, if you really don't mind. I'd love

> to chat with someone who's going thru the same

> things!!

>

>

>

> >

> > Hi Stacee, good to have you on board.

> >

> > Not sure what I can say about your baby's

> treatment as it doesn't sound like Ponseti

> Method to me. Sounds like he's had quite a few

> casts, probably more than the Ponseti

> Method would have required (average of 5 casts, five

> to seven days between castings). My

> last son was treated by Dr. Ponseti in Iowa - he

> wore casts for 25 days pre-tenotomy, then

> 17 days post-tenotomy (42 days total). He's been

> wearing the FAB since then and has

> completely normal feet.

> >

> > Have you been satisfied with all the results so

> far though? Typically a child doesn't

> need 7 weeks to heal from a tenotomy, only 3, and

> often they out grow that cast and only

> go 2 weeks with excellent results.

> >

> > Are you interested in hearing more about the

> Ponseti Method or seeking a 2nd opinon

> from a P.M. doctor?

> >

> > Typically speaking AFO and AKFO style braces have

> had little success in maintaing the

> club foot correction after the casting phase often

> resulting in relapses, thus you'll notice

> all of us here have babies that wear what is called

> the Foot Abductin Brace (FAB, often

> called a DBB) which is shoes connected to a bar as

> that has been proven to maintain the

> correction as the child grows.

> >

> > Anyway, I won't hound you - but if there is every

> any question regarding your childs

> treatment/progress, etc., please don't hesitate to

> ask and know if he does not respond to

> your current treatment methods, he's young enough to

> back up and start over with the

> Ponseti Method before any surgical cures are

> attempted. Once he's operated on though

> you'll be stuck wtih those results, either good or

> bad (usually bad).

> >

> > If you haven't done so already I urge you to visit

> our Files and Links for lots of really

> great information about CF in general and

> treatments, etc.

> >

> > Good luck,

> > shawnee

> > First time

> posting...

> >

> >

> > I have been reading over many of the previous

> posts and thought I'd like to join in ...

> My

> > third child was born 9/24/05 with a right club

> foot and has been sequentially casted

> since

> > he was 2 days old. He just had an achilles

> tenotomy on Dec 6th and is currently in the

> > cast for approx 4 weeks, then to another cast

> for ~3 more weeks before moving to the

> > AKFO.

> >

> > My husband also has a right club foot, but was

> never treated the way kids are today.

> He's

> > fully functional and you'd never know he had a

> club foot unless you looked closely. :-)

> >

> > I'm completely new to this process, and from

> what I have seen on the boards, most of

> the

> > kids here have bilateral clubs, so I'm not sure

> if the treatment post tenotomy is the

> same

> > for unilateral vs bilateral?

> >

> > It's my understanding that our ortho in

> Arlington Heights, IL will be putting our son

> into

> > an AKFO as soon as he's done with approx 7 weeks

> of casting post surgery and he'll be

> in

> > that orthotic 23/7 until he's walking, at which

> point I'm foggy on the course of

> treatment.

> >

> > I noticed another poster is seeing Dr Lemke in

> Geneva--- Would love to chat with you

> > directly if you see this message! We live in

> Sugar Grove, but opted to see Dr Marty in

> > Arlington Heights as he came highly recommended

> by a friend who's son was treated

> for

> > bilateral foot issues (not club foot.)

> >

> > Anyway, I hope you all don't mind my jumping in

> and I apologize if I ask questions that

> > have been asked a thousand times before!! :-)

> >

> > Stacee

> >

> >

> >

> >

> >

> >

> >

> >