new to group

[Guest guest]

Deb,

Welcome to the list. I don't have any personal experience to share

that is similar to your daughter's situation, but wanted to welcome

you. What hospital/doctor are you taking your daughter to ( & where

was her first surgery performed?)? Perhaps we have some members here

who know of some reputable orthopaedic surgeons in your area that you

could seek out second opinions from. What area of Wisconsin are you

in? Are you near the Shriner's hospitals in Minneapolis or Chicago?

Is she in any physical therapy programs? Does she wear any bracing?

Regards,

& (3-16-00)

left clubfoot, switched to Ponseti method at 4 months old

> Happy New Year

> I've been lurking on this list for about a week and it seems that

most of you

> have young children...however I have a question and would

appreciate your

> input. My daughter, age seven was born with bi/cf. She

was " serial casted " from

> birth until eleven months in India, her birth country. We adopted

her at

> eleven months and she had her first surgical repair at seventeen

months on both

> feet. She then wore AFO's until she was thirty-four months old at

which time

> we sought a second opinion and another surgery was performed.

>

> The surgery was more successful for her right foot than her left.

It's

> difficult to explain but her it's as if the inside of her lower

ankle has fallen on

> the ground...I know that's not a very medical explanation:) Her

toes also

> cross over each other and she has very narrow heels. Needless to

say although

> she walks, although she has very poor balance and she always

stumbles when she

> runs. Both of her calf muscles are also smaller than " normal, " and

she tires

> easily on long walks, and has not mastered riding a bike. However

I must say

> that she was the first in her swim class to go off the diving

board, as I saw

> this shaky little girl bravely trying to keep her balance while she

walked to

> the end of the board I almost passed out...but ended up crying

tears of joy

> instead:)

>

> Anyway my question is, do any of you have older children with

similar issues?

> We have another appointment with the orthopedic doctor next

month. At last

> years appointment, x-rays revealed that her foot was beginning to

grow in a

> ' " clubbed " way again.

>

> Thank you

> Deb RZ in Wisconsin

>

>

>

[Guest guest]

, & Mia-

Hi, Welcome to the group!

It may be that Mia should go back into a cast for a few days just to

allow the sores/pressure spots to heal so that you can get a fresh

start with her brace.

Her foot shouldn't move in the shoe, it should be snug enough so

there isn't any movement. This is what will cause blisters.

What doctor are you going to? Another thought...are you confident

that Mia's foot was corrected completely before she was put into the

brace? If the foot isn't completely corrected, it will come out of

the shoe also.

You should be able to get the new model of Markell shoes from your

orthotist. You will have to ask them to specifically get the new

model for you since they're probably just giving you what they have

in stock already. Markell's site is www.markellshoe.com. You can

print out the poster about the new shoes and bring it to your

orthotist. Or contact Markell direct and find out if anyone near you

is carrying the new style already. Your question about the strap

confuses me a bit. Isn't the tongue underneath the strap on your

shoes? The strap shouldn't dig into the foot. If it is, perhaps her

shoes aren't fitted properly, or perhaps her foot isn't corrected?!

It sounds like your doctor is following protocol for the hours in the

brace, though most doctors use " walking " instead of " crawling " as the

milestone for reducing the amount of hours in the brace. Depending

on the doctor and the child, the usual brace protocol when treatment

is started as a newborn is: 23 hours/day for the first 3 months after

correction is obtained, then 16-18 hr/day until walking, then ranging

from 10-14.... discontinuing the brace around ages 3-4.

Hope this helps some! I'm removed from the shoe/brace stage quite a

bit, so hopefully others who are experiencing it right now can help

you more! Don't worry about long posts...

Regards,

& (3-16-00)

left clubfoot, switched to Ponseti method at 4 mo. old

[Guest guest]

and ,

We go to Dr. in East Meadow, NY, and we like him very much.

Before he stopped the casting, he took x-rays of both of Mia's feet

to verify that her feet were corrected. I'm still not sure that we

are using the right method for her. My OB saw that Mia had a

clubfoot in utero. After she was born, four different pediatricians

told us that the problem with her foot was just positioning and that

it would " fix itself " . (We were always able to move her foot into a

straight position - and the Dr. does not think we will ever need the

tendon release.) We decided to take her to an orthopedist anyway and

he casted her on the first visit. Her foot does seem to be fine

now, but after we take off her shoes, her feet seem so swollen.

Also, everything that I've read about the Ponsetti method talks

about manipulating the foot. I massage her feet whenever we take

off the shoes, but more to comfort her. Our Dr. didn't give us any

kind of exercises that we should be doing with her. I just wonder if

wearing the braces for so many hours a day hurts her other ways

developmentally, ie. the muscles in her legs, etc. Also - and I

realize this may sound stupid - she doesn't seem happy. She's

almost 11 weeks - at this point, my first daughter was smiling and

responding so much more than she is. I guess I just need some

reassurance that what we are doing is right. We don't even know

what alternative methods there are. We were so confident in Dr.

because he explained everything in such detail - but we didn't

get any second opinions or find out about other options.

and

> , & Mia-

> Hi, Welcome to the group!

> It may be that Mia should go back into a cast for a few days just

to

> allow the sores/pressure spots to heal so that you can get a fresh

> start with her brace.

> Her foot shouldn't move in the shoe, it should be snug enough so

> there isn't any movement. This is what will cause blisters.

> What doctor are you going to? Another thought...are you confident

> that Mia's foot was corrected completely before she was put into

the

> brace? If the foot isn't completely corrected, it will come out

of

> the shoe also.

> You should be able to get the new model of Markell shoes from your

> orthotist. You will have to ask them to specifically get the new

> model for you since they're probably just giving you what they

have

> in stock already. Markell's site is www.markellshoe.com. You can

> print out the poster about the new shoes and bring it to your

> orthotist. Or contact Markell direct and find out if anyone near

you

> is carrying the new style already. Your question about the strap

> confuses me a bit. Isn't the tongue underneath the strap on your

> shoes? The strap shouldn't dig into the foot. If it is, perhaps

her

> shoes aren't fitted properly, or perhaps her foot isn't corrected?!

> It sounds like your doctor is following protocol for the hours in

the

> brace, though most doctors use " walking " instead of " crawling " as

the

> milestone for reducing the amount of hours in the brace.

Depending

> on the doctor and the child, the usual brace protocol when

treatment

> is started as a newborn is: 23 hours/day for the first 3 months

after

> correction is obtained, then 16-18 hr/day until walking, then

ranging

> from 10-14.... discontinuing the brace around ages 3-4.

> Hope this helps some! I'm removed from the shoe/brace stage quite

a

> bit, so hopefully others who are experiencing it right now can

help

> you more! Don't worry about long posts...

> Regards,

> & (3-16-00)

> left clubfoot, switched to Ponseti method at 4 mo. old

[Guest guest]

,

Welcome to the list and congrats on your baby girl! Your story sounds very

similar to ours with the sores and all. If you're new here you may not

know what some of us have had to do to rid ourselves of those horrible

sores being once they're there they do not go away while wearing the

shoes. The pressure from the spot that made the sore in the first place

will not allow it to heal. My daughter started wearing the dbb at 5w and

within a few hours had the purple spots that I not realize indicate a

pressure sore. She was VERY unhappy but I kept her in the shoes like I was

told and in short order she had a sore. A sore that got huge, weepy and

tool 7w to heal. Every time I put the shoes back on it just got

worse. And she just cried when they were on. This baby did not cry

normally and it was terrible for her to be in the shoes because they just

hurt her. I do know how hard it has been for you.

Finally, after about 3 or 4 w (can't recall how long it was right now, it's

all a blurr) we had no option other than to take the shoes off and the

Orthotist gave a last ditch effort and just cut a big hole in the back of

the shoe. Well... that was the best thing we could have ever done. First

off, it gave me a window to see what was going on and her heel was NOT all

the way down in the shoe so the plastizode insert was pressing in the wrong

spot and causing the pressure sore. Second, once I put her back in the

shoes (making sure her heel was down) it allowed the sore to heal giving it

air and no pressure. This took 3-4 weeks for it to scab over, dry out and

then completely heal. She STILL has a scar on her heel from this and it's

been over 6 months. I wonder if it'll ever go away. However... once we

got the pressure off that sore she was very happy in the dbb and has been

ever since. It was like she was a different baby. Or rather the one I had

originally lol. She's now 9mo old and has worn the dbb without problems

ever since. We also use the new style Markell boots rather than the ones

that need the inserts. I can't recommend them enough, along with making

darn sure her heel is seated firmly on the bottom of the boot. If the heel

isn't down a few bad things can happen... pressure sores, the boots slip

off (because the heel is already up high, the strap isn't tight enough

when the heel is up so they are actually loose - it seems tight but in

reality when you get that heel down properly you'll gain a couple of holes)

and cause blisters which then can turn into sores, and very importantly if

the heel is rising up the bracing does little to help maintain dorsiflexion

correction and in fact could be making the foot relapse if left pointing

down like that too long. Quite honestly I don't know if this is your

problem, you didn't say the sores were on her heels, sorry.

Also, as someone else mentioned the strap should be run through the tongue

keeper slit. We've been using the lower slit in the sides of the boots for

the strap because the information here said to but maybe you need to use

the upper slit? What I found was a main problem with keeping her heels

down in the boot was the fact that the tongue sits too high on the ankle

and doesn't allow the boot to close tightly on the small diameter of the

ankle and keep the heel down. Along with the big hole cut in the heel of

the shoe I had them cut the tongue keeper slit so that I could pull it way

down over her toes allowing the boot top to close tightly around her ankle

and not her fat baby calf. We haven't had a problem with slipping as long

as I get them tight enough with the straps since I did that and I actually

prefer them that way now. We're on our second pair of new style Markell

boots and haven't had a problem with a sore yet with them.

A couple of months back there was quite a discussion here about the

different ways to alleviate and heal sores. We went back to casts for a

week and a half to heal the sores, but they came back and that's why I cut

the hole. Others have done the same thing and had good results as well so

my first advice is find a way to heal those sores and fix whatever problem

there is in the shoes themselves that is causing the sores or you'll never

be able to have her wear them and be happy (and sore free). She must wear

them though if you're to avoid surgery. We too were told it was positional

and mild yet when an orthopedic surgeon looked at her he could tell right

away it was clubfoot. I have pics of me point her foot back to a normal

position and she could have cared less, it was very supple even then. Even

a mild clubfoot can be problematic, after all the casting and wearing the

DBB almost religiously I still notice her foot is a little different than

the other and will point in naturally when her other foot isn't... then

the other foot does the same thing so I don't worry so much but I am very

glad we have taken care of it this way rather than surgery. Even with the

sores :~}

I hope this helps, there are many other great suggestions waiting out there

so ask away and we can help you get through this. Babies really can be

happy in the DBB, I've seen both sides so I know it's possible. Fit is key

though...

Kori

Darbi 3-28-03 - Rt. CF

At 03:19 AM 1/4/04, you wrote:

> and ,

>

>We go to Dr. in East Meadow, NY, and we like him very much.

>Before he stopped the casting, he took x-rays of both of Mia's feet

>to verify that her feet were corrected. I'm still not sure that we

>are using the right method for her. My OB saw that Mia had a

>clubfoot in utero. After she was born, four different pediatricians

>told us that the problem with her foot was just positioning and that

>it would " fix itself " . (We were always able to move her foot into a

>straight position - and the Dr. does not think we will ever need the

>tendon release.) We decided to take her to an orthopedist anyway and

>he casted her on the first visit. Her foot does seem to be fine

>now, but after we take off her shoes, her feet seem so swollen.

>Also, everything that I've read about the Ponsetti method talks

>about manipulating the foot. I massage her feet whenever we take

>off the shoes, but more to comfort her. Our Dr. didn't give us any

>kind of exercises that we should be doing with her. I just wonder if

>wearing the braces for so many hours a day hurts her other ways

>developmentally, ie. the muscles in her legs, etc. Also - and I

>realize this may sound stupid - she doesn't seem happy. She's

>almost 11 weeks - at this point, my first daughter was smiling and

>responding so much more than she is. I guess I just need some

>reassurance that what we are doing is right. We don't even know

>what alternative methods there are. We were so confident in Dr.

> because he explained everything in such detail - but we didn't

>get any second opinions or find out about other options.

>

> and

>

>

>

> > , & Mia-

> > Hi, Welcome to the group!

> > It may be that Mia should go back into a cast for a few days just

>to

> > allow the sores/pressure spots to heal so that you can get a fresh

> > start with her brace.

> > Her foot shouldn't move in the shoe, it should be snug enough so

> > there isn't any movement. This is what will cause blisters.

> > What doctor are you going to? Another thought...are you confident

> > that Mia's foot was corrected completely before she was put into

>the

> > brace? If the foot isn't completely corrected, it will come out

>of

> > the shoe also.

> > You should be able to get the new model of Markell shoes from your

> > orthotist. You will have to ask them to specifically get the new

> > model for you since they're probably just giving you what they

>have

> > in stock already. Markell's site is www.markellshoe.com. You can

> > print out the poster about the new shoes and bring it to your

> > orthotist. Or contact Markell direct and find out if anyone near

>you

> > is carrying the new style already. Your question about the strap

> > confuses me a bit. Isn't the tongue underneath the strap on your

> > shoes? The strap shouldn't dig into the foot. If it is, perhaps

>her

> > shoes aren't fitted properly, or perhaps her foot isn't corrected?!

> > It sounds like your doctor is following protocol for the hours in

>the

> > brace, though most doctors use " walking " instead of " crawling " as

>the

> > milestone for reducing the amount of hours in the brace.

>Depending

> > on the doctor and the child, the usual brace protocol when

>treatment

> > is started as a newborn is: 23 hours/day for the first 3 months

>after

> > correction is obtained, then 16-18 hr/day until walking, then

>ranging

> > from 10-14.... discontinuing the brace around ages 3-4.

> > Hope this helps some! I'm removed from the shoe/brace stage quite

>a

> > bit, so hopefully others who are experiencing it right now can

>help

> > you more! Don't worry about long posts...

> > Regards,

> > & (3-16-00)

> > left clubfoot, switched to Ponseti method at 4 mo. old

>

>

>

[Guest guest]

Good Morning! I am new to the group. My name is Roxxanne and my

son Dylan has congenital bilateral clubfeet. He was casted @ 6 days

old. Had weekly cast changes for 6 weeks and now we are in our 1st

month with the dbb.

I found this group while looking for support for the dbb. Dylan has

developed a large " hole " in his heel. We are seeing the Dr today to

try and get this thing healed. I was wondering what has worked for

everyone else. Any info would be appreciated.

I have noticed that alot of you see the same Dr's Is anyone from

the Charlotte NC area?

Have a great day!

Roxxanne & Dylan

11/11/03 bilateral cf

dbb 23/7

[Guest guest]

Roxanne!

Hi! I am from Raleigh, NC. Do you see Dr. Frick in Charlotte? He is one of my

son's doctors. He is great! My son is 17 mos. There is another woman on the

group who is also from Raleigh. Her son, Drew, is 9 mos. Welcome!

7/27/02

new to group

Good Morning! I am new to the group. My name is Roxxanne and my

son Dylan has congenital bilateral clubfeet. He was casted @ 6 days

old. Had weekly cast changes for 6 weeks and now we are in our 1st

month with the dbb.

I found this group while looking for support for the dbb. Dylan has

developed a large " hole " in his heel. We are seeing the Dr today to

try and get this thing healed. I was wondering what has worked for

everyone else. Any info would be appreciated.

I have noticed that alot of you see the same Dr's Is anyone from

the Charlotte NC area?

Have a great day!

Roxxanne & Dylan

11/11/03 bilateral cf

dbb 23/7

[Guest guest]

Hi

We see Dr Walter Greene with Charlotte Ortho Specialists. I am glad

to have found this group. I need all the advice I can get.

Especially from the " pros " Hope to chat soon.

Roxxanne & Dylan

11/11/03 bilateral cf

dbb 23/7