Re: Questions about moving to nighttime wear w/ s

March 20, 2006

Hi,

I think Dr Ponseti recommends reducing the hours

gradually, for instance we were told to put them on

24h/day for 3 months, then 18h/day for 3 months (if I

remember correctly), then 14-16h/day until he can

walk, and then 12-14h/day until he's 3 or 4 years old.

We tended to do the hours in one stretch, ie put them

on in the evening and then take them off after

18/16/14 hours etc and not bother with naps (if they

didn't fall in the hours anyway). Does that make

sense? In that case you'd just leave the shoes on in

the morning and tell your day care to take them off at

X o'clock.

Alister's ankles were small as well, that's because

the shoes are on all the time and all the baby fat is

pushed up into the leg instead. It's normal for the

leg to be slightly thinner but the ankles will even

out eventually. Alister is 3 1/2 years old now (still

in the DBB at night) and his ankles look completely

normal now.

All the best,

with (3y)

and Alister (3y, right CF, Ponseti method, UK)

--- kcmsge wrote:

> Hi Everyone-

>

> Our family is very excited to have our daughter,

> , move to

> nighttime wear in her s brace only as of

> last week. She is 7

> months and is ready to start moving, so timing

> couldn't have been

> better. However, I have a few questions for parents

> out there. We

> have followed the Ponseti method from the beginning,

> she had the

> tenetomy, and she has had a great experience with

> the FAB. Her

> doctor, Dr. Lerman @ Shriners in Sacramento, said to

> put on the brace

> whenever is sleeping. I understand the

> hours are at 12-13.

> Is it okay to just put them at night or should I try

> to put them on

> during naptime too? The only reason I am asking is

> because she is

> with her daycare provider druing the day. Should I

> tell her to make

> sure to put the brace on during naps? My

> husband and I put

> on her brace around 7 at night and take it off at 7

> the following

> morning. Is that sufficient enough? I'd love to

> hear your feedback

> and experiences. Also, I notice 's ankles

> are small, will

> they grow as she gets bigger or will they stay small

> throughout her

> life? I asked her doctor and he said every baby is

> different and

> time will tell as she grows to see the physiological

> growth--but said

> her function will be just fine!

> Hope everyone is doing great--Happy Spring

>

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March 20, 2006

Hi there - I have a 7-month old too and live in Northern CA -

and we gradually reduced her hours on the P/M. Dr. P recommended

that we reduce them from 23 hours to 21 hours and then 18 hours and

now 16 hours. He told us that our next reduction will come when she

starts to walk - I think then it becomes around 12-14 hours/day? He

told us it didn't matter when we took them off (whether in one whole

stretch or several)- as long as it's during the day.

Our loves to kick her legs when she's out of the PM!

Best,

Yuuko ( DOB 8-4-05; PM 16/7)

>

> Hi Everyone-

>

> Our family is very excited to have our daughter, , move to

> nighttime wear in her s brace only as of last week. She

is 7

> months and is ready to start moving, so timing couldn't have been

> better. However, I have a few questions for parents out there.

We

> have followed the Ponseti method from the beginning, she had the

> tenetomy, and she has had a great experience with the FAB. Her

> doctor, Dr. Lerman @ Shriners in Sacramento, said to put on the

brace

> whenever is sleeping. I understand the hours are at 12-

13.

> Is it okay to just put them at night or should I try to put them

on

> during naptime too? The only reason I am asking is because she is

> with her daycare provider druing the day. Should I tell her to

make

> sure to put the brace on during naps? My husband and I

put

> on her brace around 7 at night and take it off at 7 the following

> morning. Is that sufficient enough? I'd love to hear your

feedback

> and experiences. Also, I notice 's ankles are small, will

> they grow as she gets bigger or will they stay small throughout

her

> life? I asked her doctor and he said every baby is different and

> time will tell as she grows to see the physiological growth--but

said

> her function will be just fine!

> Hope everyone is doing great--Happy Spring

>

March 20, 2006

Hi~

Just to let you know that my daughter is in the s also. Maddie is 9

months old. She is wearing them 12-14 hours a day. Maddie wears straight

through, 7 pm to 9 am (I go for the 14 hours). There has been a lot of

discussion lately regarding the number of hours to wear the s. From

what I can see, some docs go straight from full time wear to 12-14 hours,

and others do a more gradual approach... seems to depend on the doc as much

as the baby. There does not seem to be one definitive answer....

Kim

Mom to Maddie, 06/16/2005, BCF

>

> Hi Everyone-

>

> Our family is very excited to have our daughter, , move to

> nighttime wear in her s brace only as of last week. She is 7

> months and is ready to start moving, so timing couldn't have been

> better. However, I have a few questions for parents out there. We

> have followed the Ponseti method from the beginning, she had the

> tenetomy, and she has had a great experience with the FAB. Her

> doctor, Dr. Lerman @ Shriners in Sacramento, said to put on the brace

> whenever is sleeping. I understand the hours are at 12-13.

> Is it okay to just put them at night or should I try to put them on

> during naptime too? The only reason I am asking is because she is

> with her daycare provider druing the day. Should I tell her to make

> sure to put the brace on during naps? My husband and I put

> on her brace around 7 at night and take it off at 7 the following

> morning. Is that sufficient enough? I'd love to hear your feedback

> and experiences. Also, I notice 's ankles are small, will

> they grow as she gets bigger or will they stay small throughout her

> life? I asked her doctor and he said every baby is different and

> time will tell as she grows to see the physiological growth--but said

> her function will be just fine!

> Hope everyone is doing great--Happy Spring

>

March 20, 2006

At 12:32 PM 3/20/2006, you wrote:

>There does not seem to be one definitive answer....

I would have to disagree about this (said with love!!)

I believe that Dr. Ponseti gradually reduces for a reason. I believe

the protocols he's laid out are important and should be as much a

part of the treatment other docs provide as the mechanics of

correcting a CF with Ponseti Casts. By changing these protocols

doctors are sabotaging their own success rates for the children who

need the more conservative treatment protocols.

They do not know which feet will relapse, there is nothing so far

that they have found that relates relapsed feet other than brace

compliance. Every study that details successes and failures (even

great results, the ones where only 4 out of 39 feet relapsed, and

only one needed tendon transfer in the end - results like this are

considered to be 95-98% successes) calls out bracing as an indicator

for relapse. Not severity. They simply do not know which feet won't

need the additional care and as such feel that conservative

approaches for all feet is the way it needs to be done. I know this

because I have been told first hand that severity is not a

determining factor by Dr. Morcuende himself who will be publishing a

paper on this (bracing term and relapse rates) in just a few days in

Chicago. He could not tell me my daughter's foot did not need long

term bracing even though it was considered mild at birth and I would

imagine that this holds true for both the reduction schedule as well

as duration of bracing. He recommended to me that I continue to

brace her as long as she will tolerate it, up to 5y's. Not what I

wanted to hear... but ok. I believe him and that's what we'll do.

Also, if a child is in PM's... typically outside of Iowa they are not

standard and are often being used for a reason. Atypical feet would

be the ones I would think will need a more conservative approach and

the PM's are made for these feet.

So the Ponseti Physician's protocols, across the board, should

absolutely include a gradual reduction and I feel strongly there

should be no options offered to parents from the get go. Parents

should not be thinking that night bracing only comes before

walking. There are more reasons to do it gradually and I could go on

forever with tolerance and age/duration of wear issues parents have

had after reducing too soon but I think it's a bit deep for most

physicians to understand the long term effects of this quite yet...

First, I feel they should take relapse seriously and stop worrying

parents won't brace their children if they're given *too much*. I

feel the *too much* part is precisely why those of us with older

children do not have bracing issues with these kids. They know there

is no other option till mama says so.

This I feel is the definitive answer.

Those children who will not do well with reduced hours before the age

of walking will be the ones who suffer. If they don't know which

feet will do this in Iowa... how would any other physician know

better? It simply makes no sense to alter the method in this way

with the unknowns that exist with these feet.

Kori

(who realizes that many feet will be perfectly fine with less

conservative bracing...)

March 20, 2006

Hi! I think that your original question was whether or not a nighttime

stretch of hours is okay, and in doing so, forgoing the naptime wear, right?

Did Dr. Lerner gradually bring down in hours to the 12-14 hours/day,

or is this really new?

I think the reason that your post brought those discussions on was because

if the reduction was not gradual, nighttime wear only tends to lead to

intolerant babies...The babies who were fine with the brace before, suddenly

get this taste of freedom, and fight the brace now at night. I think that is

the reason that naps are usually included, too. I'm sure that someone with

more experience here can answer this one, but my guess would be that it is

the same kind of thing...Kids that only knew that sleep was with the brace

suddenly realize that they can sleep differently, in different postions when

out of the brace during naps. This can lead to a lot of frustration when

they can't do the same at night.

As much trouble as it will be to get her in that brace at daycare for naps,

it might be better for YOU if you can swing that. If she never gets a taste

of that sweet freedom (until she is 3-4), then she'll never know what she is

missing, you know? Some kids CAN'T sleep without the brace, because they

are so used to it. For your sanity, I would definately get them to put that

brace on her for those couple of hours during the day. Better sleep for you

at night! Err on the side of caution...

>

>Hi Everyone-

>

>Our family is very excited to have our daughter, , move to

>nighttime wear in her s brace only as of last week. She is 7

>months and is ready to start moving, so timing couldn't have been

>better. However, I have a few questions for parents out there. We

>have followed the Ponseti method from the beginning, she had the

>tenetomy, and she has had a great experience with the FAB. Her

>doctor, Dr. Lerman @ Shriners in Sacramento, said to put on the brace

>whenever is sleeping. I understand the hours are at 12-13.

>Is it okay to just put them at night or should I try to put them on

>during naptime too? The only reason I am asking is because she is

>with her daycare provider druing the day. Should I tell her to make

>sure to put the brace on during naps? My husband and I put

>on her brace around 7 at night and take it off at 7 the following

>morning. Is that sufficient enough? I'd love to hear your feedback

>and experiences. Also, I notice 's ankles are small, will

>they grow as she gets bigger or will they stay small throughout her

>life? I asked her doctor and he said every baby is different and

>time will tell as she grows to see the physiological growth--but said

>her function will be just fine!

>Hope everyone is doing great--Happy Spring

>

>Reply-To: nosurgery4clubfoot

>To: nosurgery4clubfoot

>Subject: Re: Questions about moving to nighttime wear

>w/ s

>Date: Mon, 20 Mar 2006 14:31:33 -0800

>

>At 12:32 PM 3/20/2006, you wrote:

> >There does not seem to be one definitive answer....

>

>I would have to disagree about this (said with love!!)

>

>I believe that Dr. Ponseti gradually reduces for a reason. I believe

>the protocols he's laid out are important and should be as much a

>part of the treatment other docs provide as the mechanics of

>correcting a CF with Ponseti Casts. By changing these protocols

>doctors are sabotaging their own success rates for the children who

>need the more conservative treatment protocols.

>

>They do not know which feet will relapse, there is nothing so far

>that they have found that relates relapsed feet other than brace

>compliance. Every study that details successes and failures (even

>great results, the ones where only 4 out of 39 feet relapsed, and

>only one needed tendon transfer in the end - results like this are

>considered to be 95-98% successes) calls out bracing as an indicator

>for relapse. Not severity. They simply do not know which feet won't

>need the additional care and as such feel that conservative

>approaches for all feet is the way it needs to be done. I know this

>because I have been told first hand that severity is not a

>determining factor by Dr. Morcuende himself who will be publishing a

>paper on this (bracing term and relapse rates) in just a few days in

>Chicago. He could not tell me my daughter's foot did not need long

>term bracing even though it was considered mild at birth and I would

>imagine that this holds true for both the reduction schedule as well

>as duration of bracing. He recommended to me that I continue to

>brace her as long as she will tolerate it, up to 5y's. Not what I

>wanted to hear... but ok. I believe him and that's what we'll do.

>

>Also, if a child is in PM's... typically outside of Iowa they are not

>standard and are often being used for a reason. Atypical feet would

>be the ones I would think will need a more conservative approach and

>the PM's are made for these feet.

>

>So the Ponseti Physician's protocols, across the board, should

>absolutely include a gradual reduction and I feel strongly there

>should be no options offered to parents from the get go. Parents

>should not be thinking that night bracing only comes before

>walking. There are more reasons to do it gradually and I could go on

>forever with tolerance and age/duration of wear issues parents have

>had after reducing too soon but I think it's a bit deep for most

>physicians to understand the long term effects of this quite yet...

>First, I feel they should take relapse seriously and stop worrying

>parents won't brace their children if they're given *too much*. I

>feel the *too much* part is precisely why those of us with older

>children do not have bracing issues with these kids. They know there

>is no other option till mama says so.

>

>This I feel is the definitive answer.

>

>Those children who will not do well with reduced hours before the age

>of walking will be the ones who suffer. If they don't know which

>feet will do this in Iowa... how would any other physician know

>better? It simply makes no sense to alter the method in this way

>with the unknowns that exist with these feet.

>

>Kori

>(who realizes that many feet will be perfectly fine with less

>conservative bracing...)

>

March 21, 2006

Hi Kori,

Thanks for the feedback about the hours. I have been thinking about this

lately, as has about a month left in her 23/7 wear. While I LOVE to hold

my baby out of the braces, dress her in " non brace friendly " cute clothes and

want her to have time to practice moving around without it, I won't do anything

to compromise our eventual goal, which is to have straight and fully functional

feet for a lifetime. We have both been through too much to risk a relapse

because of something which I could control. There is enough about this whole

process that is out of our control, but the hours in the brace are something I

CAN control.

Our ortho, BTW, approaches this as if he expects parents not to comply with the

bracing schedule. He makes the correct recommendations and then quizzes you on

the next appointment to see what you have ACTUALLY done. LOL He seemed

surprised when I told him that has indeed been in them 23/7 and we would

continue this. I told him that I planned to be conservative with the bracing

hours and perhaps wear the brace longer hours or until she is older than typical

just for insurance. I think he thought, " Yeah, right! We'll see what she

actually does! " He is a wonderful doc, but I think his experience has been that

many or most parents don't comply with the bracing schedule.

So what seems to be a good conservative bracing schedule for a typical baby who

is ending the 23/7 wear at the age of six months and has some time in them

before walking? (i.e. What hours do we do after 23/7 and for how long? Until

when before lowering them?) I was waiting to ask this question until we were

almost done with the process, but this thread has prompted me to get a plan now!

I also think that 's feet may be more prone to relapse because they are a

bit atypical, according to Dr. Ponseti. Thanks for any feedback,

Carol and , bcf, 10-27-05, s 23/7

Re: Questions about moving to nighttime wear w/

s