Re: Question about reduced hours

[Guest guest]

I would err on the side of caution and keep up with the 16 - 18 hour routine.

Not sure how old your baby is but I think the 18 is used until they are

standing/cruising/walking, then reduced to the 14. It's pretty critical to keep

him in the DBB for the hours prescribed by the Ponseti protocol. Initially the

23 hours should be for 3 months. I fear reducing his hours too soon could lead

to an eventual relaps.

s.

Question about reduced hours

My son has been in the dbb for a month for 18 hours a day, before that

he was in it for 2.5 months for 23/7. When we went for his checkup

yesterday another doctor, not ours, told us he only needed to wear

them at nap and at night. That comes out to about 14 hours a day. Does

that sound right?

and bilateral cf 11/10/03 dbb 18/7

[Guest guest]

> I would err on the side of caution and keep up with the 16 - 18

hour routine. Not sure how old your baby is but I think the 18 is

used until they are standing/cruising/walking, then reduced to the

14. It's pretty critical to keep him in the DBB for the hours

prescribed by the Ponseti protocol. Initially the 23 hours should

be for 3 months. I fear reducing his hours too soon could lead to

an eventual relaps.

>

> s.

He's 16 months and not walking yet. He's starting physical therapy

next week to strengthen his calf muscles so he can stand alone. We

had a non-Ponseti doctor until he was 10 months old, so he's been in

casts and the dbb full-time that's why he's not walking yet. Should

I drop down to 14 do you think or stay at 18 for a little longer?

and bilateral cf 11/10/03 dbb 18 hours

[Guest guest]

This is out of my league here - I'm just not sure what I would suggest. At his

age I suppose he does need time to learn how to use his legs. Anyone else on

here have any suggestions???

s.

Re: Question about reduced hours

> I would err on the side of caution and keep up with the 16 - 18

hour routine. Not sure how old your baby is but I think the 18 is

used until they are standing/cruising/walking, then reduced to the

14. It's pretty critical to keep him in the DBB for the hours

prescribed by the Ponseti protocol. Initially the 23 hours should

be for 3 months. I fear reducing his hours too soon could lead to

an eventual relaps.

>

> s.

He's 16 months and not walking yet. He's starting physical therapy

next week to strengthen his calf muscles so he can stand alone. We

had a non-Ponseti doctor until he was 10 months old, so he's been in

casts and the dbb full-time that's why he's not walking yet. Should

I drop down to 14 do you think or stay at 18 for a little longer?

and bilateral cf 11/10/03 dbb 18 hours

[Guest guest]

,

I would suggest that you specifically ask your doctor to call Dr.

Ponseti &/or Dr. Morcuende, Dietz or Weinstein etc. since I think

Dr. P is now in Spain...

have him discuss with the U of Iowa staff the particulars about

's case and his current condition and let them weigh in based

on their experiences with treating older children in the past.

That's my 2 cents- for what it's worth.

Your doctor really probably wouldn't have a problem communicating

directly with them if you explain to him that it would really give

you peace of mind if he taps into their experiences with protocols

for older kids and what to " watch for " . After all, I would guess

that the U of Iowa staff has the most experience in treating older

kids who started the method " later " (i.e. not from or near

birth)...and your doctor would be interested to hear their input is

regarding bracing protocol.

Keep us posted-

& (3-16-00, left clubfoot)

[Guest guest]

>

> ,

> I would suggest that you specifically ask your doctor to call Dr.

> Ponseti &/or Dr. Morcuende, Dietz or Weinstein etc. since I think

> Dr. P is now in Spain...

> have him discuss with the U of Iowa staff the particulars about

> 's case and his current condition and let them weigh in based

> on their experiences with treating older children in the past.

>

> That's my 2 cents- for what it's worth.

> Your doctor really probably wouldn't have a problem communicating

> directly with them if you explain to him that it would really give

> you peace of mind if he taps into their experiences with protocols

> for older kids and what to " watch for " . After all, I would guess

> that the U of Iowa staff has the most experience in treating older

> kids who started the method " later " (i.e. not from or near

> birth)...and your doctor would be interested to hear their input

is

> regarding bracing protocol.

> Keep us posted-

> & (3-16-00, left clubfoot)

That's a good idea, although I think I might call Iowa myself. I'm

not sure my doctor would appreciate being second guessed, but that's

just my opinion, I don't know that for sure.

Have others with older children going into the dbb had a different

protocol? How long were your children in the dbb for 16-18 hours a

day before they were reduced to 12-14?

BTW he's beginning to stand alone for brief periods!

Thanks,

and dbb ?/7 11/10/03

[Guest guest]

karen,

my daughter grace was treated by non-ponseti for the first 13 months... we are

in the Dobb's Brace 23/7 right now.. she has not learned to walk yet either and

is almost 16 months old... i too am concerned about that... and we are going

back to dr dobb's in 3 weeks to hopefully get reduced to 16 hours.. but i will

say that i would not reduce the hours at all unless your dr says it's ok... you

have come a long way and switched doctors all to get his little feet straight...

i would not do anything to jepordize that at this point... and i understand how

you feel... i am hoping that grace will learn to walk by the time she is 18

months old.. she can pull up but has no interest at this point in walking... and

i'm not sure she can hold herself upright without the support or a table or

whatever... but i have been so so strict with her brace time because she went

through so much the first 13 months and i just don't want to ever have to go

back to casts... hth...

although i will tell you that we go back in 3 weeks and if he doesn't reduce her

hours i will probably have the most unbelievable broken heart!!! and will cry

cry cry... i just can't wait for her to start walking...

mommy to Grace 12-03-03 BCF Dobb's Brace 23/7

number23 number23@...> wrote:

This is out of my league here - I'm just not sure what I would suggest. At his

age I suppose he does need time to learn how to use his legs. Anyone else on

here have any suggestions???

s.

He's 16 months and not walking yet. He's starting physical therapy

next week to strengthen his calf muscles so he can stand alone. We

had a non-Ponseti doctor until he was 10 months old, so he's been in

casts and the dbb full-time that's why he's not walking yet. Should

I drop down to 14 do you think or stay at 18 for a little longer?

and bilateral cf 11/10/03 dbb 18 hours

love, lisa

before i made you in the womb, i knew you... love God.

__________________________________________________

[Guest guest]

Thanks for your response. My main fear is having to go back into

casts. I don't want to risk losing any correction.

The good news is that in just the month since he's been reduced to

16-18 hours a day he's walking holding onto things and just this

weekend he started standing alone for a second or two. The physical

therapist said it will come without P.T., but it'll come faster with

it.

I just found this in an interview with Dr. Ponseti.

" Q. How long is the FAB (Foot Abduction Brace) worn for?

A. The answer should be initially 2 to 3 months of full time wear

(23 hours a day), followed by night and naptime wear until the child

is between 2 and 4 years of age. In a few cases, the child has loose

joints and stops FAB wear earlier, but it is generally recommended

that they stay in it at least until 2 and a half years old. Dr

Ponseti's experience has shown that there is the highest tendency

for relapse between the age of 2 and 2 and half years of age. If you

comply with brace wear as prescribed in the Ponseti Method, you are

100% assured of avoiding relapse in the majority of clubfoot cases. "

So maybe reducing hours to nights and naps is okay now? What is the

purpose of gradually reducing? Is it keep the feet from relapsing or

to keep the child from rejecting the dbb? I'm so confused!

and dbb ?/7 11/10/03

> This is out of my league here - I'm just not sure what I would

suggest. At his age I suppose he does need time to learn how to use

his legs. Anyone else on here have any suggestions???

> s.

> He's 16 months and not walking yet. He's starting physical therapy

> next week to strengthen his calf muscles so he can stand alone. We

> had a non-Ponseti doctor until he was 10 months old, so he's been

in

> casts and the dbb full-time that's why he's not walking yet.

Should

> I drop down to 14 do you think or stay at 18 for a little longer?

>

> and bilateral cf 11/10/03 dbb 18 hours

>

>

> love, lisa

> before i made you in the womb, i knew you... love God.

>

>

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>

[Guest guest]

karen,

i have read several posts in the last few weeks of parents that reduced from 23

hours to night times (at the advice of doctors)... and the children had horrible

times trying to sleep... and their doctors at that point told them to increase

to 16 hours a day and then slowly reduce again... something about the lack of

the brace aggitates them and they can't sleep... i would think that would be

wonderful to them but there have been lots of cases that it upset the child....

but that is just my opinion.... i was told by dr dobb's that grace would need to

be in the brace 14-16 hours a day until she was walking to prevent relapse and

only do night times when she is fully walking... using the walking as her main

way of getting around... what has your doctor said?

mommy to Grace 12-03-03 BCF Dobb's Brace 23/7

" Q. How long is the FAB (Foot Abduction Brace) worn for?

A. The answer should be initially 2 to 3 months of full time wear

(23 hours a day), followed by night and naptime wear until the child

is between 2 and 4 years of age. In a few cases, the child has loose

joints and stops FAB wear earlier, but it is generally recommended

that they stay in it at least until 2 and a half years old. Dr

Ponseti's experience has shown that there is the highest tendency

for relapse between the age of 2 and 2 and half years of age. If you

comply with brace wear as prescribed in the Ponseti Method, you are

100% assured of avoiding relapse in the majority of clubfoot cases. "

So maybe reducing hours to nights and naps is okay now? What is the

purpose of gradually reducing? Is it keep the feet from relapsing or

to keep the child from rejecting the dbb? I'm so confused!

and dbb ?/7 11/10/03

love, lisa

before i made you in the womb, i knew you... love God.

__________________________________________________

[Guest guest]

As far as I know, no doc even thought of that. The parents came here with

the issue, got the suggestion to increase hours and it worked. I just

wanted to point that out (not to argue), as whichever docs are reducing so

drastically like this... haven't a clue how it affects the child. Not to

mention the idea that reducing from 23/7 to nights only (which ends up

being 10-12 depending on how long the child sleeps) does not follow the

Ponseti Protocol... and could very well lead to relapses. Time will tell.

Kori

At 12:09 PM 3/28/2005, you wrote:

> and their doctors at that point told them to increase to 16 hours a day

> and then slowly reduce again...

[Guest guest]

The doctor we saw on Friday, who was not our doctor, told us we

could go to nights and nap only now. I think, but don't know for

sure, that our doctor put that in our chart.

and ?/7 dbb 11/10/03

> karen,

> i have read several posts in the last few weeks of parents that

reduced from 23 hours to night times (at the advice of doctors)...

and the children had horrible times trying to sleep... and their

doctors at that point told them to increase to 16 hours a day and

then slowly reduce again... something about the lack of the brace

aggitates them and they can't sleep... i would think that would be

wonderful to them but there have been lots of cases that it upset

the child.... but that is just my opinion.... i was told by dr

dobb's that grace would need to be in the brace 14-16 hours a day

until she was walking to prevent relapse and only do night times

when she is fully walking... using the walking as her main way of

getting around... what has your doctor said?

>

> mommy to Grace 12-03-03 BCF Dobb's Brace 23/7

>

>

> " Q. How long is the FAB (Foot Abduction Brace) worn for?

>

> A. The answer should be initially 2 to 3 months of full time wear

> (23 hours a day), followed by night and naptime wear until the

child

> is between 2 and 4 years of age. In a few cases, the child has

loose

> joints and stops FAB wear earlier, but it is generally recommended

> that they stay in it at least until 2 and a half years old. Dr

> Ponseti's experience has shown that there is the highest tendency

> for relapse between the age of 2 and 2 and half years of age. If

you

> comply with brace wear as prescribed in the Ponseti Method, you

are

> 100% assured of avoiding relapse in the majority of clubfoot

cases. "

>

>

> So maybe reducing hours to nights and naps is okay now? What is

the

> purpose of gradually reducing? Is it keep the feet from relapsing

or

> to keep the child from rejecting the dbb? I'm so confused!

>

> and dbb ?/7 11/10/03

>

>

>

> love, lisa

> before i made you in the womb, i knew you... love God.

>

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>

[Guest guest]

I would like to point out that not all children do have problems with

this reduction. Kelsey was reduced to 12 hours from 23 and our life has

actually gotten back to being pleasant. She no longer fights the bar at

all and accepts it as part of her bedtime ritual without complaint. I

understand that this is not exactly protocol but having experienced this

treatment with an older child, I emphatically believe that this protocol

cannot be applied across the board to toddlers and infants alike. I

know many may disagree with me but that is my experience.

Jenni

frogabog wrote:

>As far as I know, no doc even thought of that. The parents came here with

>the issue, got the suggestion to increase hours and it worked. I just

>wanted to point that out (not to argue), as whichever docs are reducing so

>drastically like this... haven't a clue how it affects the child. Not to

>mention the idea that reducing from 23/7 to nights only (which ends up

>being 10-12 depending on how long the child sleeps) does not follow the

>Ponseti Protocol... and could very well lead to relapses. Time will tell.

>

>Kori

>

>

>

>

>At 12:09 PM 3/28/2005, you wrote:

>

>

>> and their doctors at that point told them to increase to 16 hours a day

>>and then slowly reduce again...

>>

>>

>

>

>

>

>

[Guest guest]

jenni...

grace is very active also.. but when she's out of her braces and i try to get

her to stand and walk holding my hands or to just put her down on her feet she

won't do it... but she cruises and climbs and all that just fine... so i am

hoping maybe it's just a minor deal and that she will get over that quickly and

move on to bigger and better things... like running!!! i will let you know

though... thanks for talking to me...

mommy to Grace 12-03-03 BCF Dobb's Brace 23/7

Jenni Cypher jcypher@...> wrote:

,

Kelsey has been reduced in hours now for about a month and she is

walking a lot more. It is not her primary mode of transportation yet

but she does a little bit more every day. I do believe that in a month

she will be a full blown walker if not before. So I do not believe the

2 month goal is unreasonable. Kelsey was still very active on her feet

in her brace when she had it on and would walk with her push toys etc

even with the brace. That probably plays a role in her development

after the brace as well. I am not sure where Grace is in that respect

but take that into consideration as well.

Jenni

love, lisa

before i made you in the womb, i knew you... love God.

__________________________________________________

[Guest guest]

,

is just a month older than Grace. This is what he does too, he

cruises and walks as long as he's holding onto something. We just

began physical therapy and she told me he doesn't stand alone

because his calf muscles are weak and he probably feels like his

legs will collapse. She did say he would eventually walk on his own

without any intervention, but she thought she could help him

strengthen those muscles. You might want to ask your doctor about

physical therapy.

and 11/10/03 dbb 16/7

> jenni...

> grace is very active also.. but when she's out of her braces and i

try to get her to stand and walk holding my hands or to just put her

down on her feet she won't do it... but she cruises and climbs and

all that just fine... so i am hoping maybe it's just a minor deal

and that she will get over that quickly and move on to bigger and

better things... like running!!! i will let you know though...

thanks for talking to me...

>

> mommy to Grace 12-03-03 BCF Dobb's Brace 23/7

[Guest guest]

karen...

i most definitley will... i think that is part of her problem... she has

unbelievable thigh strength... it's really amazing to watch some times.. but her

little calves don't seem to be pulling their own weight... i have been trying to

work with her a little on my own with the standing and all... and she is getting

a little better.. but not much... we will see what he thinks when he sees her...

dr dobbs actually hasn't seen her since her surgery... when we took her back to

get her casts off and get the braces he had to leave out of town for a family

emergency... so we just saw the brace people... so i am really anxious for him

to see her little feet and see what he thinks...

mommy to Grace 12-03-03 BCF Dobb's Brace 23/7

onemorebb tristan2@...> wrote:

,

is just a month older than Grace. This is what he does too, he

cruises and walks as long as he's holding onto something. We just

began physical therapy and she told me he doesn't stand alone

because his calf muscles are weak and he probably feels like his

legs will collapse. She did say he would eventually walk on his own

without any intervention, but she thought she could help him

strengthen those muscles. You might want to ask your doctor about

physical therapy.

and 11/10/03 dbb 16/7

love, lisa

before i made you in the womb, i knew you... love God.

__________________________________________________

[Guest guest]

,

The orthopedic surgeon we saw on Friday from Shriner's says that

small calves are typical for clubfoot babies, but he did say

physical therapy was fine. It was our pediatrician who recommended

P.T.

Now that the physical therapist is working with him I can tell his

legs tire easily.

Good luck and let me know what you find out from Dr. Dobbs.

and 11/10/03 dbb 16/7

>

> ,

>

> is just a month older than Grace. This is what he does too,

he

> cruises and walks as long as he's holding onto something. We just

> began physical therapy and she told me he doesn't stand alone

> because his calf muscles are weak and he probably feels like his

> legs will collapse. She did say he would eventually walk on his

own

> without any intervention, but she thought she could help him

> strengthen those muscles. You might want to ask your doctor about

> physical therapy.

>

> and 11/10/03 dbb 16/7

>

>

> love, lisa

> before i made you in the womb, i knew you... love God.

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

that's her... the little bandit!! she gives me a little fight when i have to put

them back on after her bath but not too bad... and is ok once they are on

also... i think they just feel the need to let us know that they are not happy

about it... but will accept it since we are bigger and stronger... lol... i

think grace is going to be more tom-boy... she loves to climb on things and

won't ever just get in her chaid and sit... she will only get in if she climbs

over the arms or the back... she has one of those osh-kosh mini chairs for

kids... loves it... is her favorite... and don't even think about sitting in it

or pretended to sit in it.. she gets very possesive... it's sweet.. only 3 more

weeks and maybe she will get to reduce... i am counting the days.. let me know

when samantha takes the steps on her own... i am very excited for you and i

think it's close...

mommy to Grace 12-03-03 BCF Dobb's Brace 23/7

michelle andyandsamanthamom@...> wrote:

well seeing what has been posted on the board maybe i will just go

with stride rite. unfortunetly we do not have a store that sells

them here so i may have to buy over the internet. i hate it cause i

like to try them on before i buy.

im the same way i love the girly stuff!! i have to get everything

that matches the outfit! are we crazy or what? i was told once " boy

you can sure tell you needed a girl! " i really enjoy it what can i

say!

when we went to see dr.p he told us just to make sure the shoes had

ankle support and that is what we bought but they are slippery for

some reason on our floor.

after i spoke with dr.p in february he wants to see picture of her

again in 3 months. in 2 months now i should say. she is doing great!

loves to be out of the shoes. fights me when i put them on but after

they are on she does not mind. she still walks but holding on to

furniture. i think the shoes although they provide ankle support the

slippery part doesnt help.

what is funny is i noticed how much she loves shoes and purses. i

told my dh you are in for a big surprise!

so is grace still trying to become a brace outlaw? i thought that

was so cute when you said she just laughed and clapped when she

broke them! take care you two!

and

BL CF 12/16/03

love, lisa

before i made you in the womb, i knew you... love God.

__________________________________________________

[Guest guest]

is 18 months now and Dr Ponseti said he should be in his shoes for 16

hours.. So that 's what we're doing.....

--------- Re: Question about reduced hours

> I would err on the side of caution and keep up with the 16 - 18

hour routine. Not sure how old your baby is but I think the 18 is

used until they are standing/cruising/walking, then reduced to the

14. It's pretty critical to keep him in the DBB for the hours

prescribed by the Ponseti protocol. Initially the 23 hours should

be for 3 months. I fear reducing his hours too soon could lead to

an eventual relaps.

>

> s.

He's 16 months and not walking yet. He's starting physical therapy

next week to strengthen his calf muscles so he can stand alone. We

had a non-Ponseti doctor until he was 10 months old, so he's been in

casts and the dbb full-time that's why he's not walking yet. Should

I drop down to 14 do you think or stay at 18 for a little longer?

and bilateral cf 11/10/03 dbb 18 hours

[Guest guest]

That's exactly where we're at, age and hours.

s.

is 18 months now and Dr Ponseti said he should be in his shoes for 16

hours.. So that 's what we're doing.....

--------- Re: Question about reduced hours

> I would err on the side of caution and keep up with the 16 - 18

hour routine. Not sure how old your baby is but I think the 18 is

used until they are standing/cruising/walking, then reduced to the

14. It's pretty critical to keep him in the DBB for the hours

prescribed by the Ponseti protocol. Initially the 23 hours should

be for 3 months. I fear reducing his hours too soon could lead to

an eventual relaps.

>

> s.

He's 16 months and not walking yet. He's starting physical therapy

next week to strengthen his calf muscles so he can stand alone. We

had a non-Ponseti doctor until he was 10 months old, so he's been in

casts and the dbb full-time that's why he's not walking yet. Should

I drop down to 14 do you think or stay at 18 for a little longer?

and bilateral cf 11/10/03 dbb 18 hours

[Guest guest]

Ooops, I'm wrong, we're at 18 months and 14 hours. Ignore that last post!

s.

----- Original Message -----

is 18 months now and Dr Ponseti said he should be in his shoes for 16

hours.. So that 's what we're doing.....