Re: new to group - lots of questions

[Guest guest]

Welcome to the group !

DeeDee

California

[Guest guest]

Welcome to the group! We're happy to have you here and we all commend you on

doing your homework early!

I don't know of any good doctor's in Texas. I'm in Oklahoma, none here either.

My nephew (now 18 years old) was treated at the Shrine in Shreveport for club

foot and continues to go there (maybe he's just 17?) - but long story short, I'd

avoid that place like the plague as far as treating cf goes. He is so not

corrected and remains pretty crippled up.

On the bright side, you have many alternatives! Please understand that cf is

completely correctable in almost 100% of the cases, but you have to get it

treated correctly right from the start to acheive that - therefore you may have

to travel. Most of us here do travel.

On that note, there are organizations that can help with this, including Angel

Flights and other groups that can and will transport you at no cost to the

facility you need to go to.

There is a Shrine hospital in St. Louis Missouri with a highly trained and

recommended Ponseti method doctor named Dr. Dobbs. Being through a Shrine of

course that would be no cost to you either, so you'd be out very little to

travel there for treatment.

Of course we all support the Ponseti method here and all of us would recommend

that method over any other by leaps and bounds. There will be doctors in your

city who claim to use it; who claim it doesn't work; who claim their method is

better...a lot of claims, but personal experience has taught us again and again

that there is no treatment method superior to Ponseti's. The risk of getting

local treatment (non-Ponseti) is the doctor will do more harm than good in the

long run. We've seen it a million times here, and many of us are the parents of

children who went that route with major regrets later on (including me).

You can nip all this in the bud early and permanently by seeking the right care,

and not letting anyone else work on your baby when she's born. Hospitals like

to push parents in to casting the baby's feet before they leave the hospital -

and that is not necessary. You do hav a small window of opportunity to get the

right care, even if that means delaying the start of casting by a few weeks

after the birth. Better to wait a few weeks than let someone else start

something when they aren't going to do it right and could easily create more

problems that will need addressed down the road.

We wish you the best of luck and we're here to help so what ever we can do,

please let us know.

If you haven't already, please check out the Files and Links to this group for a

lot more information.

ee

new to group - lots of questions

During a recent sonogram at 22 weeks of pregnancy, it was confirmed

that our daughter has a club foot. It is a left unilateral. I am

just now starting on the search for the right doctor/hospital and

trying to learn as much as possible.

Is there anyone out there who used ish Rite in Dallas or Shriners

in Shreveport LA? We live in between and could travel to either. Any

feedback on doctors in this area would be greatly appreciated.

Also, I have noticed in most of the pictures of babies with a club

foot that the toes point toward the other foot and the bottom of the

foot faces backwards. In our sonogram, the baby's foot was at a 90

degree angle with the bottom of the foot facing the inside of her

right leg and her toes were parallel with her legs - big toe at top.

I haven't learned all of the different terms yet - is there a special

term for this?

Thanks in advance for any info you can provide to a mom who isn't " in

the know " yet!

[Guest guest]

We had 5 u/s with our son and his foot looked similar to the way you described.

They almost looked like an L with the leg. When he was born both feet were

turned so that he could see the bottom of them if he were to look down. This is

pretty common I think. Some babies feet are also curved in a C. 's was

slightly curved but not very much.

I am unable to help with the hospitals but I know there are some that have at

least mentioned Dallas, so you should get some replies.

11/19/04

Lesley J wrote:

During a recent sonogram at 22 weeks of pregnancy, it was confirmed

that our daughter has a club foot. It is a left unilateral. I am

just now starting on the search for the right doctor/hospital and

trying to learn as much as possible.

Is there anyone out there who used ish Rite in Dallas or Shriners

in Shreveport LA? We live in between and could travel to either. Any

feedback on doctors in this area would be greatly appreciated.

Also, I have noticed in most of the pictures of babies with a club

foot that the toes point toward the other foot and the bottom of the

foot faces backwards. In our sonogram, the baby's foot was at a 90

degree angle with the bottom of the foot facing the inside of her

right leg and her toes were parallel with her legs - big toe at top.

I haven't learned all of the different terms yet - is there a special

term for this?

Thanks in advance for any info you can provide to a mom who isn't " in

the know " yet!

[Guest guest]

Hi there and welcome!

My son Jake was born with bilateral club foot 8/1/04 and was treated

at ish Rite in Dallas using the Ponseti method starting at 10

days old. His feet are corrected at this point and he's doing great -

started walking Nov 26 (at almost 16mos). I didn't really have any

issues with their treatment until it came to wearing the FAB/DBB

shoes/brace. You can probably do a search and see my other messages

that will give you an indepth description of our case, but to make a

long story short..I do disagree with them on the length of time in

the shoes. They had me reduce Jake's time in the shoes (after the

initial 3 months of full time wear) much too drastically and I had

major problems which is when and how I found this group (searching

online for help). Once we got over that hump, we've been doing fine

ever since. I'm also going to have Jake stay in them until he's 4

years old which is what Dr. Ponseti now recommends. ish Rite is

saying probably 2-3 years and I'd rather be safe than have him

regress and have to start all over. I've also seen Dr Lund

for a second opinion. He has offices in Carrolton and North Richland

Hills. In his opinion, ish Rite made the Tenotomy incision

either too low or too high (I can't remember which) and as a result

there is some scar tissue, but he said it shouldn't be a big deal in

the grand scheme of things. I was extremely impressed with Dr Lund

and highly recommend him as well even though he didn't treat Jake

personally - he just really seems to know Dr. Ponseti's method and

seems to be very gentle and compassionate with children. Hope this

helps. Also, I worried about the whole clubfoot thing through out my

pregnancy and now wish I hadn't worried so much. It's totally

treatable. Jake is just like any other baby - he just has to wear a

brace at night. It's been a hassle/inconvenience at times, but after

treatment, I've never even thought of it as a handicap/deformity or

anything else - he's perfectly " normal " in every sense. So try not

to let this thing worry you and just enjoy your pregnancy.

Congratulations!

>

> During a recent sonogram at 22 weeks of pregnancy, it was confirmed

> that our daughter has a club foot. It is a left unilateral. I am

> just now starting on the search for the right doctor/hospital and

> trying to learn as much as possible.

> Is there anyone out there who used ish Rite in Dallas or

Shriners

> in Shreveport LA? We live in between and could travel to either.

Any

> feedback on doctors in this area would be greatly appreciated.

> Also, I have noticed in most of the pictures of babies with a club

> foot that the toes point toward the other foot and the bottom of

the

> foot faces backwards. In our sonogram, the baby's foot was at a 90

> degree angle with the bottom of the foot facing the inside of her

> right leg and her toes were parallel with her legs - big toe at

top.

> I haven't learned all of the different terms yet - is there a

special

> term for this?

> Thanks in advance for any info you can provide to a mom who

isn't " in

> the know " yet!

>

[Guest guest]

Lesley,

Welcome to the group and congrats on your pregnancy and baby girl to

be! There are different severities of clubfoot, both in physical

appearance and in flexibility. From what you are describing it sounds

like your daughter's foot may be a bit more severe in appearance. The

good news is that there is no way of knowing how stiff the foot is

until she is born. Many clubfoot babies are born with what looks to

be a severe case - even some where the big toe is touching the back of

the calf - but the foot is not rigid and responds rapidly to the

proper treatment. No matter what the case, the Ponseti method of

correction is by far the best way to go. You can read more about the

method here:

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

x.html

There is also a list of qualified doctors in the method on that site.

I know the doctors at the Shreveport Shriners are NOT the best when

it comes to clubfoot correction. I believe that ish Rite in

Dallas uses the French Method which is another non-surgical method

which involves intensive physiotherapy at home by the parents. There

is a Dr. Lund in Houston (I think) who is experienced in the Ponseti

method and there is Dr. Dobbs at the St. Louis Shriners - he

is one of the top Ponseti docs and being at Shriners all the care is

free.

Hope this helps you some, and again, welcome!

Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs brace 14hrs/day)

>

> During a recent sonogram at 22 weeks of pregnancy, it was confirmed

> that our daughter has a club foot. It is a left unilateral. I am

> just now starting on the search for the right doctor/hospital and

> trying to learn as much as possible.

> Is there anyone out there who used ish Rite in Dallas or Shriners

> in Shreveport LA? We live in between and could travel to either. Any

> feedback on doctors in this area would be greatly appreciated.

> Also, I have noticed in most of the pictures of babies with a club

> foot that the toes point toward the other foot and the bottom of the

> foot faces backwards. In our sonogram, the baby's foot was at a 90

> degree angle with the bottom of the foot facing the inside of her

> right leg and her toes were parallel with her legs - big toe at top.

> I haven't learned all of the different terms yet - is there a special

> term for this?

> Thanks in advance for any info you can provide to a mom who isn't " in

> the know " yet!

>

[Guest guest]

Welcome to the group! Congratulations on your pending arrival!

I, too, have a unilateral left daughter. She's almost 6 years old

now and doing great!

Here's a website that might help you with your research:

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

Here's a website for Dr. Lund in Texas: www.metrofootankle.com

This might be an option for you.

If you want to use the Ponseti method at ish Rite, then you're

going to have to do a lot of research so that you understand what is

the correct protocol for the Ponseti method. We can help you with

that hopefully. Unfortunately, I can't tell you for sure if there

is a doctor there who is using the method correctly. Perhaps some

other member of our board knows the current staff there and can fill

you in.

In the past, you typically couldn't find a doctor at ish Rite

who was using the method unaltered. The published success rates

(success being full correction without invasive surgery) were lower

than what is typically expected.

Please check out the information on this messageboard's site in the

files, links, and photos sections. There's a wealth of info there.

I haven't read the responses to your post yet, but what you've

described about the position of your daughter's foot is normal,

well, normal for clubfoot anyway. All clubfeet are different...some

kids' feet are twisted all the way around so that the soles of the

feet are facing the baby's bottom, some are just a little bit

curved, or they may be anywhere in between. I hope this helps some!

We're glad you're here!

Here's my daughter's website: http://ponseticlubfoot.freeservers.com/

Keep asking questions!

Regards,

& (3-16-00, left clubfoot, switched to Ponseti method at

4 months old)

>

> During a recent sonogram at 22 weeks of pregnancy, it was

confirmed

> that our daughter has a club foot. It is a left unilateral. I am

> just now starting on the search for the right doctor/hospital and

> trying to learn as much as possible.

> Is there anyone out there who used ish Rite in Dallas or

Shriners

> in Shreveport LA? We live in between and could travel to either.

Any

> feedback on doctors in this area would be greatly appreciated.

> Also, I have noticed in most of the pictures of babies with a club

> foot that the toes point toward the other foot and the bottom of

the

> foot faces backwards. In our sonogram, the baby's foot was at a

90

> degree angle with the bottom of the foot facing the inside of her

> right leg and her toes were parallel with her legs - big toe at

top.

> I haven't learned all of the different terms yet - is there a

special

> term for this?

> Thanks in advance for any info you can provide to a mom who

isn't " in

> the know " yet!

>

[Guest guest]

Welcome! I am in Fort Worth, Texas and am using Dr. Hinton Hamilton at Cook

Children's Hospital. He uses the Ponseti method. I am not familiar with other

docs in the area...sorry I can't be of more help there. We like Dr. Hamilton,

though. You must be near Tyler, huh?

We discovered our baby girl's bilateral club feet at a 16 week sono so I

understand the need to try and figure it out while she is in utero. I did the

same thing. What I was told by the docs is that it is not possible to tell the

severity of the club foot until after birth when the stiffness can be evaluated.

It was hard waiting to see my baby's feet until after she was born. They are

correcting nicely, though.

Please keep my email and stay in touch if you decide to come to the metroplex

for treatment. I am new at this process, too, but would be glad to offer any

support that I can. THis is a great group, BTW. It has been invaluable to me.

BTW, congrats on your baby girl!

Carol and , bcf, 10-27-05

new to group - lots of questions

During a recent sonogram at 22 weeks of pregnancy, it was confirmed

that our daughter has a club foot. It is a left unilateral. I am

just now starting on the search for the right doctor/hospital and

trying to learn as much as possible.

Is there anyone out there who used ish Rite in Dallas or Shriners

in Shreveport LA? We live in between and could travel to either. Any

feedback on doctors in this area would be greatly appreciated.

Also, I have noticed in most of the pictures of babies with a club

foot that the toes point toward the other foot and the bottom of the

foot faces backwards. In our sonogram, the baby's foot was at a 90

degree angle with the bottom of the foot facing the inside of her

right leg and her toes were parallel with her legs - big toe at top.

I haven't learned all of the different terms yet - is there a special

term for this?

Thanks in advance for any info you can provide to a mom who isn't " in

the know " yet!