Re: any moms in Los Angeles with b/club feet?

[Guest guest]

I strongly suggest you research the Ponseti Method of treatment for your

daughter while she still has time to enjoy a full recovery. This going back

and forth in casts and wearing afo braces will not correct her condition with

satisfactory results - as has already been proven if she is in and out of casts

as you describe. If you visit the files, link and photos sections of this

group you'll find a wealth of information. Also, if you look on my web page and

click Shaw's Page, you will find out a lot too about clubfoot treatments via the

Ponseti Method. Your daughter is young enough now to start the Ponseti Method

and enjoy really, really good fast correction that will last her a life time!!!

Please go look further and find out why your current mode of treatment is

failing her. There really is a better way that is much easier and gentler to

the baby while still being miles more effective.

To maintain correction, the child's brace needs to hold her foot abducted at 60

to 70 degrees with about 15 degrees of dorsiflexion - which is what the " boots

and bar " do. AFO's cannot do this. While your daughter is in a cast, her

other foot is regressing because it is not braced. The AFO will not hold any

correction, it simply can not work on clubfoot, it is not designed for that.

It's a lot to digest but please consider looking further and discovering for

yourself why there IS a difference, and we can help you find it.

Check out the files, links, photos, and my page detailing my son's cf

treatments, OK?

ee

Mother of 3 Clubfooted Sons:

- Bilateral Club Feet April 1998

Everett - Bilateral Club Feet September 2003

Garrison - Bilateral Club Feet March 2006

Visit us on the Web! (click Shaw's Page)

www.WildlifeRevivalTaxidermy.com

any moms in Los Angeles with b/club feet?

I am new to this group. I have a 9 1/2 months old daughter born with

bilateral club feet. At age 2 weeks, she had the serial casting for 7

weeks. She then had braces until now. At age 3 months, a cast had to

be placed on her left foot for 10 days. At 4 months, she had the

tendon/ligament release surgery. Her left foot is still not flexible

and a cast was placed again twice this month. She may have another one

if there's still no improvement. This is a wait and see situation.

Meanwhile, she's been crawling great with her left cast and right

brace and stands up holding on the superyard gate.

I have asked her orthopedist's assistant if she could stand and later

learn to walk with her braces and she advises to put on regular tennis

shoes to put over her braces. Do you think it is a good advice? She

has tried them yet. Thanks !!! lydmam

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[Guest guest]

Hi Lydmam,

Sounds like you and your daughter have been having a rough time of it.

A couple things jump out at me about your daughter's treatment.

First, the use of the braces you mention - I'm assuming you are

meaning some sort of AFO instead of the shoes attached to a bar (DBB

or FAB - foot abduction brace). The use of an AFO without a bar

between the shoes will not maintain the correction of her feet.

Which, it sounds like has been the case what with the continued need

for re-casting. These sorts of troubles are common, but not really

necessary if you find the right doctor. Does your doctor say that

he/she is using the Ponseti method of clubfoot correction? If so, it

sounds like there are some deviations from the proper protocol, which

again, is common, but will not help your daughter have the perfect

feet that she could if she were treated by an experienced Ponseti

specialist. A few links you might want to check out:

A list of questions to see if your doctor is using the Ponseti method

or a variation of it:

http://members.tripod.com/ponseti_links-ivil/id13.html

Dr. Ponseti's website:

http://www.uihealthcare.com/topics/medicaldepartments/orthopaedics/clubfeet/inde\

x.html

The list of doctors who are qualified in the method:

http://www.uihealthcare.com/topics/medicaldepartments/orthopaedics/clubfeet/phys\

icians.html

The global-help booklet that details the method:

http://www.global-help.org/publications/books/help_cfponseti.pdf

A new global-help booklet for parents:

http://www.global-help.org/publications/books/help_cfparents.pdf

Whew, that's a lot of information!

There are a lot of parents here who have been where you are -- trouble

with the brace, feet not fully corrected, relapses, you name it, and

we are here to help you through it. If you'd like to share with us

who your current doctor is some other parents may be able to chime in

with some experience with him/her. Also, you said you are from the LA

area, I'm not familiar off-hand with any doctors practicing the

Ponseti method directly in LA, but if you look at the link above for

qualified physicians you can see the docs who are qualified in CA.

Also, I'm sure some of the other parents here will chime in with their

experiences w/ docs on the west coast.

Hope this helps, just keep hanging in there and we will help you get

things on the right track for you and your dd's tootsies.

Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace, 12hrs/day)

>

> I am new to this group. I have a 9 1/2 months old daughter born with

> bilateral club feet. At age 2 weeks, she had the serial casting for 7

> weeks. She then had braces until now. At age 3 months, a cast had to

> be placed on her left foot for 10 days. At 4 months, she had the

> tendon/ligament release surgery. Her left foot is still not flexible

> and a cast was placed again twice this month. She may have another one

> if there's still no improvement. This is a wait and see situation.

> Meanwhile, she's been crawling great with her left cast and right

> brace and stands up holding on the superyard gate.

> I have asked her orthopedist's assistant if she could stand and later

> learn to walk with her braces and she advises to put on regular tennis

> shoes to put over her braces. Do you think it is a good advice? She

> has tried them yet. Thanks !!! lydmam

>

[Guest guest]

Hi and welcome to our group! It really sounds like your daughter

could benefit from a second opinion regarding the status of her

clubfoot correction. At 9 months old, she should definitely be

fully corrected and not in a 'wait and see' holding pattern at all!

Many of the other families here have been in similar situations and

after getting a 2nd or 3rd opinion, have been able to find a really

good doctor who knows what they're doing. Due to your daughter's

age and treatment history, I would recommend that you seek out the

most experienced doctors that have successfully treated older kids.

Specifically for CA, that would be either Dr. Colburn in

Pleasanton/Walnut Creek (my first choice for recommendation) or Dr.

Lerman or Dr. Boakes at the Sacramento Shriners. There are a few

doctors in the LA area on the list, but I would not be comfortable

recommending them as first choices at this time due to your

daughter's history that you've shared with us. Time is of the

essence, and the best bet in my opinion would be to get your

daughter in with a very experienced doctor and then when she is back

on track, perhaps do the follow-up appointments with one of the

local doctors. Here's the information for these doctors:

Colburn, D.P.M.

The Permanente Medical Group

7601 Stoneridge Drive

Pleasanton, CA 94588-2899

Tel: (leave a message with Clara Toms)

Fax:

.Colburn@...

Lerman, MD

Shriners Hospitals for Children

2425 Stockton Blvd.

Sacramento, CA 95817

Tel:

jlerman@...

If you have any specific questions about FAB bracing versus AFO

bracing etc., please ask. Or if you have any concerns/questions at

all!

I hope this information is helpful, even though it's just my 2

cents! =) Glad you found the group! We look forward to hearing

about your daughter's progress!

Regards,

& (3-16-00, lcf)

http://ponseticlubfoot.freeservers.com/

>

> I am new to this group. I have a 9 1/2 months old daughter born

with

> bilateral club feet. At age 2 weeks, she had the serial casting

for 7

> weeks. She then had braces until now. At age 3 months, a cast had

to

> be placed on her left foot for 10 days. At 4 months, she had the

> tendon/ligament release surgery. Her left foot is still not

flexible

> and a cast was placed again twice this month. She may have another

one

> if there's still no improvement. This is a wait and see situation.

> Meanwhile, she's been crawling great with her left cast and right

> brace and stands up holding on the superyard gate.

> I have asked her orthopedist's assistant if she could stand and

later

> learn to walk with her braces and she advises to put on regular

tennis

> shoes to put over her braces. Do you think it is a good advice?

She

> has tried them yet. Thanks !!! lydmam

>

[Guest guest]

Hi, I'm pretty new here too, I live two hours north of LA in

Tehachapi. We go to the Children's Hospital in Madera (near Fresno)

and see Dr. Halsey. He is not on the list but seems to be following

the treatment schedule of Dr. Ponseti very closely. We are pleased

so far with the results. My baby boy, , is just over two months

old, he had his first casts at 10 days then weekly for five casts,

then his tenotomy and has been in those casts for almost 4 weeks, he

gets those removed TOMORROW and his DBB shoes the same day. I would

agree with the other, more experienced moms, that have responded to

you and say that something seems not quite right with the treatment

your daughter has had so far. I'm not familiar with the doctors in

that area to know who you should look for but there are others that

will be able to direct you. I just wanted to say 'hi' since you're

the closest in location to us that I've seen in this group! Best

wishes for you in your search for good advice, this is a good place

to get info regarding clubfeet!

Jodi

>

> I am new to this group. I have a 9 1/2 months old daughter born

with

> bilateral club feet. At age 2 weeks, she had the serial casting

for 7

> weeks. She then had braces until now. At age 3 months, a cast had

to

> be placed on her left foot for 10 days. At 4 months, she had the

> tendon/ligament release surgery. Her left foot is still not

flexible

> and a cast was placed again twice this month. She may have another

one

> if there's still no improvement. This is a wait and see situation.

> Meanwhile, she's been crawling great with her left cast and right

> brace and stands up holding on the superyard gate.

> I have asked her orthopedist's assistant if she could stand and

later

> learn to walk with her braces and she advises to put on regular

tennis

> shoes to put over her braces. Do you think it is a good advice?

She

> has tried them yet. Thanks !!! lydmam

>

[Guest guest]

Hi there and welcome. I signed on for the first time in months and

your message jumped out at me. I live in Los Angeles and my

daughter was born in January with bcf. Today, her feet are

perfect. We sought a doctor who practices the Ponseti Method. He

is certified , on Ponseti's list, located in Long Beach. I'm

curious to know who you currently see and what treatment you are

receiving. Not knowing any better, we first began with a non-

Ponseti but then switched and I'm so pleased. On a scale of 1-5 on

flexibility (5 being the least flexible), we were rated at 3.5 to

4. Today, you would never know. I encourage you to look into

getting a second opinion since your baby is still young and this can

all be corrected with no more worries of relapse. If you have any

questions, please feel free to email me and I will do my best to get

you any information I have.

mommy to -J'nee, bcf, FAB 12/7 (7 months old)

>

> I am new to this group. I have a 9 1/2 months old daughter born

with

> bilateral club feet. At age 2 weeks, she had the serial casting

for 7

> weeks. She then had braces until now. At age 3 months, a cast had

to

> be placed on her left foot for 10 days. At 4 months, she had the

> tendon/ligament release surgery. Her left foot is still not

flexible

> and a cast was placed again twice this month. She may have another

one

> if there's still no improvement. This is a wait and see situation.

> Meanwhile, she's been crawling great with her left cast and right

> brace and stands up holding on the superyard gate.

> I have asked her orthopedist's assistant if she could stand and

later

> learn to walk with her braces and she advises to put on regular

tennis

> shoes to put over her braces. Do you think it is a good advice?

She

> has tried them yet. Thanks !!! lydmam

>

[Guest guest]

Hello,

We're in Los Angeles as well. We just moved here from New York, where

our son's foot was corrected with the Ponseti method. We actually

have out first appointment with our new Ponseti-certified Dr. out

here tomorrow morning. (We've been in the brace since

November, and are down to 14 hours/day of wear.) We're going to Dr.

King in Tarzana, which is only about 20 mins. from Hollywood. I'll

post back to let you know what I think of him. There is another

Ponseti Doctor in Long Beach - maybe that is closer to where you are.

I definitely encourage you to contact one of the few Ponseti

certified Drs. in this area to seek a second opinion regarding your

daughter's feet. As anyone on this list will tell you, this method

of treatment WORKS and is usually very easy on the child (as well as

the parent!).

All the best,

[Guest guest]

Hi ,

Welcome to LA! I just wanted to drop a quick line regarding the

doctor you're going to see in Tarzana. When I first joined this

board and was seeking a certified doctor, I considered the doctor in

Tarzana (was it Dr. King?) as well but I received feedback from some

other parents on the site that he deviates a little from the true

Ponseti method. It may be OK since you've already been treated and

are in the follow-up stages. I considered travelling up north as

well either to Sacramento Shriners or to see Dr. Colburn but we

ended up in Long Beach where we are very happy with the decision.

Dr. is very competent and there is no deviation from the

technique whatsoever.

Let us know how it goes nonetheless.

>

> Hello,

>

> We're in Los Angeles as well. We just moved here from New York,

where

> our son's foot was corrected with the Ponseti method. We

actually

> have out first appointment with our new Ponseti-certified Dr. out

> here tomorrow morning. (We've been in the brace since

> November, and are down to 14 hours/day of wear.) We're going to

Dr.

> King in Tarzana, which is only about 20 mins. from Hollywood.

I'll

> post back to let you know what I think of him. There is another

> Ponseti Doctor in Long Beach - maybe that is closer to where you

are.

>

> I definitely encourage you to contact one of the few Ponseti

> certified Drs. in this area to seek a second opinion regarding

your

> daughter's feet. As anyone on this list will tell you, this

method

> of treatment WORKS and is usually very easy on the child (as well

as

> the parent!).

>

> All the best,

>

>

>

[Guest guest]

We had our appointment with Dr. King this morning, and from what I

gathered he follows the Method to a T. I looked through his book of

before and after photographs, and talked with him about his protocol

and it was all right on. The only difference I found was that he is

more strict about time in the FAB - he encourages 23/hrs. a day of

wear until the child is standing, and gradually decreases after

that. He also seems to be a fan of having the child in a straight

edge shoe during the day when not in the brace. I've never heard of

that, and don't know that I'm going to do it. I plan on e-mailing

our Dr. in New York to ask his opinion. I hate to put Elliot in

something during his " free " hours unless it is absolutely necessary.

Dr. King was unfamiliar with the FAB - he was aware that

they were out there but had not seen them in person until we brought

ours in this morning. He was impressed, of course, and made copies

of the pamphlet from MDOrtho, and plans to recommend them to some of

his patients. His bedside manner is a little gruff, but he quickly

warmed up and was gentle and friendly to my son.

We're already in the maintenance phase of treatment, so we will only

be seeing Dr. King every three months for a checkup, but I would have

felt comfortable with him treating my son had we been in LA at the time.

[Guest guest]

,

It sounds like you are having a better experience with Dr. King than

my family had. LOL

His bedside manner with us left ALOT to be desired. He had my

daughter who at the time was about 2 (I think ) wearing her

shoes on the opposite feet and was pushing for the use of the AFO

brace. We were just going to him for checkups also.... we had

gone to Dr. Ponseti for initial treatment. We ended up going back

to Iowa one summer and saw Dr. Ponseti again and he said that the

AFO was going to be a waste of money and time, she needed the ATTT

surgery and my husband and I were going to have it done back home in

LA, but when we got back and talked to Dr. King about it he

disagreed and continued to insist on the AFO.

Our family had alot of decisions in the next couple of years and

last summer we moved to Iowa (about 90 min from Iowa City).

had her surgery done 4 mos ago. with Dr. Morcuende and is

now doing FANTASTIC!!

I hope that he has changed the way that he is operating... I

just thought that you should be aware so that you can be on the look

out!

in Iowa, mommy to 4.5yrs, bilateral clubfoot

ATTT 4/13/06

>

> We had our appointment with Dr. King this morning, and from what

I

> gathered he follows the Method to a T. I looked through his book

of

> before and after photographs, and talked with him about his

protocol

> and it was all right on. The only difference I found was that he

is

> more strict about time in the FAB - he encourages 23/hrs. a day

of

> wear until the child is standing, and gradually decreases after

> that. He also seems to be a fan of having the child in a

straight

> edge shoe during the day when not in the brace. I've never heard

of

> that, and don't know that I'm going to do it. I plan on e-

mailing

> our Dr. in New York to ask his opinion. I hate to put Elliot in

> something during his " free " hours unless it is absolutely

necessary.

> Dr. King was unfamiliar with the FAB - he was aware that

> they were out there but had not seen them in person until we

brought

> ours in this morning. He was impressed, of course, and made

copies

> of the pamphlet from MDOrtho, and plans to recommend them to some

of

> his patients. His bedside manner is a little gruff, but he

quickly

> warmed up and was gentle and friendly to my son.

>

> We're already in the maintenance phase of treatment, so we will

only

> be seeing Dr. King every three months for a checkup, but I would

have

> felt comfortable with him treating my son had we been in LA at the

time.

>