Re: Just joined the group: Pinja & Miia

May 19, 2006

You are obviously a wise and caring mom to seek out these opinions for your

daughter's care so you are clearly not lazy! We all hope for more time out of

the brace for our babies and celebrate when that happens.

My daughter is too young for me to speak from experience about babies meeting

milestones while in the brace, but it is my understanding that the brace will

not slow down these milestones and that your daughter should be able to learn

how to do many things with the brace on. does roll now and does so all

over the house wherever she wants to go regardless of whether or not she is

wearing her brace. It has not slowed her down at all. Your daughter will learn

to do many things with the brace on which will amaze you!

There is no other expert besides Dr. Ponseti who has the same amount of

knowledge and experience with treating club feet so I know you can trust his

advice. His advice on bracing is also individualized for the particular child,

taking age into account. We all risk a relapse for our kids, even with

following very strict bracing protocols. It is just the " nature of the beast " ,

something that can happen. But I believe you can feel good about following Dr.

Ponseti's advice. Welcome to our group!

Carol and

Just joined the group: Pinja & Miia

Hi!

I just found this amazing group that has already helped me a lot. I

want to introduce myself and Pinja, my daughter. She is 6 months old

and has a right clubfoot (the leg is also affected by amniotic

banding, as well as her right hand fingers) that has been treated

with casting, DBB for 3 months, then a tenotomy after relapse and now

DBB again. We live in Finland.

Pinja has accepted the casts and the DBB without any problems. We had

a problem with the DBB before the tenotomy, her heel just wouldn't

stay down in the shoe and she often kicked the shoe of her clubfoot.

Now after the tenotomy, the heel is apparently better shaped to stay

in the right place.

I have a problem on my mind. Our doctor adviced us to use the DBB

23/7 for the next three months, after the tenotomy was made and the

foot casted for 3 weeks. In three months, Pinja will be 9 months and

still wearing the brace full time. I feel sorry for her, because she

can't do the things that she would do without the brace even now

(rolling over), how will she be able to crawl, sit and stand up... We

wrote to Dr. Ponseti and he told us to wear the DBB for 20 hours,

then after a month 18 hours, and then 16. I totally believe in dr.

Ponseti's expertise, but it is very hard to make a decision in this

situation. What if we decide to wear the DBB for less than 23 hours

and the result is a relapse. I am, at this moment, so annoyed with

the shoes and the brace, that it is very tempting to go with dr.

Ponseti's advice... would I be a lazy, irresponsible mom to do so...

May 19, 2006

Hi miia,

My name is and I have an 11 month old baby girl, na and we have

had a long haul as well. She just started the DBB and I feel the same way

you do. However, babies are very adaptable and she is crawling all over the

place and pulling herself up on furniture with the brace on, as she is

wearing them 23/7 for 2 months...I am actually going back to see the doc to

see if we can recuce hours a little bit since she has had them for a month

now. It definitely takes a while to get used to them but once the little

one gets used to them, you will too. I was fed up with them for a while

too, but now its just a part of everyday life and its just fine!!

and na

>

>Reply-To: nosurgery4clubfoot

>To: nosurgery4clubfoot

>Subject: Just joined the group: Pinja & Miia

>Date: Fri, 19 May 2006 18:53:31 -0000

>

>Hi!

>

>I just found this amazing group that has already helped me a lot. I

>want to introduce myself and Pinja, my daughter. She is 6 months old

>and has a right clubfoot (the leg is also affected by amniotic

>banding, as well as her right hand fingers) that has been treated

>with casting, DBB for 3 months, then a tenotomy after relapse and now

>DBB again. We live in Finland.

>

>Pinja has accepted the casts and the DBB without any problems. We had

>a problem with the DBB before the tenotomy, her heel just wouldn't

>stay down in the shoe and she often kicked the shoe of her clubfoot.

>Now after the tenotomy, the heel is apparently better shaped to stay

>in the right place.

>

>I have a problem on my mind. Our doctor adviced us to use the DBB

>23/7 for the next three months, after the tenotomy was made and the

>foot casted for 3 weeks. In three months, Pinja will be 9 months and

>still wearing the brace full time. I feel sorry for her, because she

>can't do the things that she would do without the brace even now

>(rolling over), how will she be able to crawl, sit and stand up... We

>wrote to Dr. Ponseti and he told us to wear the DBB for 20 hours,

>then after a month 18 hours, and then 16. I totally believe in dr.

>Ponseti's expertise, but it is very hard to make a decision in this

>situation. What if we decide to wear the DBB for less than 23 hours

>and the result is a relapse. I am, at this moment, so annoyed with

>the shoes and the brace, that it is very tempting to go with dr.

>Ponseti's advice... would I be a lazy, irresponsible mom to do so...

>

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May 19, 2006

Miia,

I agree with Carol. You've already done 3 months full time in the

DBB, right? Before the tenotomy? Due to her age I would say that you

should be safe in following the hours Dr. Ponseti recommended.

In regards to the bar affecting development, it normally does not. If

your daughter is 6 months and not rolling over I might consider

seeking some physical therapy for her, or at least consulting with

your pediatrician on this. A couple other things to look at -- Is she

able to sit with some support? Does she hold her head up well? It is

pretty unlikely that it is the brace that is keeping her from rolling,

maybe she just doesn't feel the need yet! Remember all babies

develop at different rates and some choose to reach their milestones

out of order.

Hope this helps!

>

> You are obviously a wise and caring mom to seek out these opinions

for your daughter's care so you are clearly not lazy! We all hope for

more time out of the brace for our babies and celebrate when that

happens.

>

> My daughter is too young for me to speak from experience about

babies meeting milestones while in the brace, but it is my

understanding that the brace will not slow down these milestones and

that your daughter should be able to learn how to do many things with

the brace on. does roll now and does so all over the house

wherever she wants to go regardless of whether or not she is wearing

her brace. It has not slowed her down at all. Your daughter will

learn to do many things with the brace on which will amaze you!

>

> There is no other expert besides Dr. Ponseti who has the same amount

of knowledge and experience with treating club feet so I know you can

trust his advice. His advice on bracing is also individualized for

the particular child, taking age into account. We all risk a relapse

for our kids, even with following very strict bracing protocols. It

is just the " nature of the beast " , something that can happen. But I

believe you can feel good about following Dr. Ponseti's advice.

Welcome to our group!

>

> Carol and

> Just joined the group: Pinja & Miia

>

> Hi!

>

> I just found this amazing group that has already helped me a lot. I

> want to introduce myself and Pinja, my daughter. She is 6 months old

> and has a right clubfoot (the leg is also affected by amniotic

> banding, as well as her right hand fingers) that has been treated

> with casting, DBB for 3 months, then a tenotomy after relapse and now

> DBB again. We live in Finland.

>

> Pinja has accepted the casts and the DBB without any problems. We had

> a problem with the DBB before the tenotomy, her heel just wouldn't

> stay down in the shoe and she often kicked the shoe of her clubfoot.

> Now after the tenotomy, the heel is apparently better shaped to stay

> in the right place.

>

> I have a problem on my mind. Our doctor adviced us to use the DBB

> 23/7 for the next three months, after the tenotomy was made and the

> foot casted for 3 weeks. In three months, Pinja will be 9 months and

> still wearing the brace full time. I feel sorry for her, because she

> can't do the things that she would do without the brace even now

> (rolling over), how will she be able to crawl, sit and stand up... We

> wrote to Dr. Ponseti and he told us to wear the DBB for 20 hours,

> then after a month 18 hours, and then 16. I totally believe in dr.

> Ponseti's expertise, but it is very hard to make a decision in this

> situation. What if we decide to wear the DBB for less than 23 hours

> and the result is a relapse. I am, at this moment, so annoyed with

> the shoes and the brace, that it is very tempting to go with dr.

> Ponseti's advice... would I be a lazy, irresponsible mom to do so...

>

May 19, 2006

Welcome, Miia & Pinja!

We're glad you're here! One of our good friends from the board,

Sanna, traveled from Finland to Iowa City to have her son, Veeti,

treated by Dr. Ponseti because there were no doctors there at the

time who knew the method. When she returned, she was very

instrumental in encouraging the doctors in Finland to learn the

Ponseti method. I understand that it's more wide spread there now,

which is wonderful. In fact, there will be a big clubfoot meeting

there this year and one of Dr. Ponseti's colleagues, Dr.

Morcuende, will be traveling to Finland to attend the convention.

My daughter was treated by Dr. Ponseti, but we started off with

other doctors, so she didn't see him until she was already 4 months

old. She wore the brace full time from age 5.5 months to 8.5

months. During this time, she rolled, sat up, crawled, pulled up to

a stand and even started to walk along holding the furniture in her

brace. I have a few pictures of her doing this at this site:

http://members.tripod.com/ponseti_links-ivil under the bracing

section.

You do not have to worry about the brace slowing Pinja down from

reaching her milestones. She will do all of those activities when

she wants to, brace or no brace!

I would personally advise that you discuss Dr. Ponseti's

recommendation with your doctor. If your doctor is prescribing the

conservative full time wear maybe it's because he feels that your

daughter's foot is difficult (stiff maybe?) and prone to relapse.

But maybe he's not had many older children who have had a late

tenotomy and is just following the same standard post-tenotomy

protocol for younger infants. He can always consult with Dr.

Ponseti personally about your daughter's case and then you can feel

assured that you're not risking relapse by reducing the hours

slightly.

Dr. Ponseti is wonderful about advising parents via email using only

pictures as a guide, but since he cannot examine the foot in person,

it's still good to discuss his recommendations with the baby's

doctor to make sure that there aren't other conditions or concerns

that can only be discovered with a physical exam of the foot.

We're glad you're here and hope you'll continue to post and keep us

updated on your little girl!

Best wishes,

& (3-16-00, left clubfoot)

>

> Hi!

>

> I just found this amazing group that has already helped me a lot.

I

> want to introduce myself and Pinja, my daughter. She is 6 months

old

> and has a right clubfoot (the leg is also affected by amniotic

> banding, as well as her right hand fingers) that has been treated

> with casting, DBB for 3 months, then a tenotomy after relapse and

now

> DBB again. We live in Finland.

>

> Pinja has accepted the casts and the DBB without any problems. We

had

> a problem with the DBB before the tenotomy, her heel just wouldn't

> stay down in the shoe and she often kicked the shoe of her

clubfoot.

> Now after the tenotomy, the heel is apparently better shaped to

stay

> in the right place.

>

> I have a problem on my mind. Our doctor adviced us to use the DBB

> 23/7 for the next three months, after the tenotomy was made and

the

> foot casted for 3 weeks. In three months, Pinja will be 9 months

and

> still wearing the brace full time. I feel sorry for her, because

she

> can't do the things that she would do without the brace even now

> (rolling over), how will she be able to crawl, sit and stand up...

We

> wrote to Dr. Ponseti and he told us to wear the DBB for 20 hours,

> then after a month 18 hours, and then 16. I totally believe in dr.

> Ponseti's expertise, but it is very hard to make a decision in

this

> situation. What if we decide to wear the DBB for less than 23

hours

> and the result is a relapse. I am, at this moment, so annoyed with

> the shoes and the brace, that it is very tempting to go with dr.

> Ponseti's advice... would I be a lazy, irresponsible mom to do

so...

>

May 20, 2006

Thank you all for wellcoming us and giving your advice. I will try to

read earlier messages and get to know all of you and your lovely

children!

Someone asked about Pinja's development. I was a little unclear in my

expressions. Pinja does roll over without the brace (she learned it

while the leg was casted), but now that she's back in the brace, she

can't roll. But I am quite sure she'll get there with a little time

and more muscles... I just hate to see her have to go that extra mile

in everything. Her development is going just normally. Actually she

was born one month premature, so even for that reason only, I should

not worry about rolling. She sits when supported etc.

You are right that Dr. Ponseti hasn't seen her foot and examined her.

Our doctor explained his recommendations, that it is always 23/7

after a tenotomy. That is why I didn't just agree, because I knew

already that Ponseti also uses reduced hours in some cases. I didn't

have the guts to say, that we had already been in contact with

Ponseti and he had said something totally different, I didn't want to

start a debate with him. He has said the foot is fine now, but I

can't be sure if he thinks it is likely to relapse again.

But we will go at least this first month 23/7 and possibly discuss

this with our doctor after that... we just don't communicate with our

doctor very well, I don't know why. I hope we did, that would be a

big help in a doctor-patient-relationship...

Miia

May 20, 2006

Miia,

You're actually in a very good situation in that your doctor is

being careful and conservative! It's better than to have to fight

with them when they're making deviations that put your child at risk

for relapse or damage!

We're glad you're here!

Regards,

& (3-16-00, lcf)

>

> Thank you all for wellcoming us and giving your advice. I will try

to

> read earlier messages and get to know all of you and your lovely

> children!

>

> Someone asked about Pinja's development. I was a little unclear in

my

> expressions. Pinja does roll over without the brace (she learned

it

> while the leg was casted), but now that she's back in the brace,

she

> can't roll. But I am quite sure she'll get there with a little

time

> and more muscles... I just hate to see her have to go that extra

mile

> in everything. Her development is going just normally. Actually

she

> was born one month premature, so even for that reason only, I

should

> not worry about rolling. She sits when supported etc.

>

> You are right that Dr. Ponseti hasn't seen her foot and examined

her.

> Our doctor explained his recommendations, that it is always 23/7

> after a tenotomy. That is why I didn't just agree, because I knew

> already that Ponseti also uses reduced hours in some cases. I

didn't

> have the guts to say, that we had already been in contact with

> Ponseti and he had said something totally different, I didn't want

to

> start a debate with him. He has said the foot is fine now, but I

> can't be sure if he thinks it is likely to relapse again.

>

> But we will go at least this first month 23/7 and possibly discuss

> this with our doctor after that... we just don't communicate with

our

> doctor very well, I don't know why. I hope we did, that would be a

> big help in a doctor-patient-relationship...

>

> Miia

>

May 20, 2006

Hi and welcome.

First of all, I would have no reservations about following Dr.

Ponseti's instructions.

Secondly, while my daughter went into the brace a few weeks

ago, she was in the Markells with the DBB from 3 months until 11

months (she is now 13 months). Lily could roll over in the brace

(she became quite proficient at it actually--she would roll a dozen

times quickly to get across the room) and crawl very quickly (zoom).

She is now in the s full-time which has a straight bar vs.

the arched one from the DBB and pulls up to standing and does a

little scooting on her feet (in addition to crawling). Lily is very

resilient and determined and while I would love to spare her the

difficulty of her treatment, I can't teach her brother the character

traits Lily is learning. She has to be creative in getting around

and is sharp at negotiating spaces (so as not to get " caught " ). Lily

was in the DBB part-time and loved to crawl up the stairs. When she

had to return to casts, she spent 30 minutes consecutively trying to

get up the stairs and I'll be, she got it! She was so proud and

learned hard work brings rewards (she learns that one alot). She is

now able to get up ALL our stairs in her brace. So, watch out! You

won't be able to hold Pinja back. In addition, I have read that

children who crawl longer have higher intelligence (I am not sure if

this is the right word) from the right brain, left brain use required

from crawling. I don't know if this is " true " or not but it makes me

feel better when my little one is going to be quite late in walking

but her case is not typical!

I understand the feeling of loss for your daughter (my heart as also

ached for my daughter), but I want to reassure you that the world is

Pinja's oyster and she will be an even more incredible person for

this experience.

Wishing you the best,

>

> Hi!

>

> I just found this amazing group that has already helped me a lot. I

> want to introduce myself and Pinja, my daughter. She is 6 months

old

> and has a right clubfoot (the leg is also affected by amniotic

> banding, as well as her right hand fingers) that has been treated

> with casting, DBB for 3 months, then a tenotomy after relapse and

now

> DBB again. We live in Finland.

>

> Pinja has accepted the casts and the DBB without any problems. We

had

> a problem with the DBB before the tenotomy, her heel just wouldn't

> stay down in the shoe and she often kicked the shoe of her

clubfoot.

> Now after the tenotomy, the heel is apparently better shaped to

stay

> in the right place.

>

> I have a problem on my mind. Our doctor adviced us to use the DBB

> 23/7 for the next three months, after the tenotomy was made and the

> foot casted for 3 weeks. In three months, Pinja will be 9 months

and

> still wearing the brace full time. I feel sorry for her, because

she

> can't do the things that she would do without the brace even now

> (rolling over), how will she be able to crawl, sit and stand up...

We

> wrote to Dr. Ponseti and he told us to wear the DBB for 20 hours,

> then after a month 18 hours, and then 16. I totally believe in dr.

> Ponseti's expertise, but it is very hard to make a decision in this

> situation. What if we decide to wear the DBB for less than 23 hours

> and the result is a relapse. I am, at this moment, so annoyed with

> the shoes and the brace, that it is very tempting to go with dr.

> Ponseti's advice... would I be a lazy, irresponsible mom to do so...

>

May 20, 2006

Hi Pinja! Congratulations on your daughter and welcome to the group. My son

also got a late start in the brace and I was worried it would hold him back.

Let me show you two video clips and you can form your own opinion from them:

Take care and keep in touch!

miia_uotinen wrote: Hi!