Re: Mom of 4 year old, regarding FAB

May 3, 2004

Shelby - thank you so much for posting! This would be a great post to send

to the Clubfoot list - as there may be some who aren't familiar with how

the traditional casting methods don't correct like proper Ponseti casts do

- even after a long time in casts. It seems the prevailing thoughts are

that casting doesn't work for some and those need surgery. I am not sure

if they know (or accept) that their Dr. wasn't doing the casting like we've

had done - and because it's totally different they can't compare their

experiences with casting with the experiences of a baby casted with Ponseti

casts. It seems like many parents who have Dr's that pointed them towards

surgery tell the parents that because the casting they did didn't work

their baby's feet were just *too severe* or whatever and that's why casting

didn't work. You experience shows that traditional casting indeed doesn't

work well for many babies but with just a few Ponseti casts the foot comes

right into place. I wonder about one thing though - and I think I know the

answer but someone will surely correct me if I'm wrong... the 5% that are

difficult to correct are babies that have worn the DBB and still not stayed

corrected right? These babies get correction from casting at first but

relapse right? Or do they not respond to the casting like the other 95%

do? If someone could clarify I'd be thrilled to clear that up for

myself. ??

What I would like to find and talk to are parents who have had their babies

go through whatever other method of traditional serial casting (short leg,

groin, Kite, whatever) and who came through without any relapses at all

(older children - like over 5 or 6yo's who haven't had any surgeries and

their feet are perfect). Just to find out if there really are children out

there who were casted traditionally (well, Kite seems to have a better

success rate than the others but still not that high) who were in the 50%

success rate group that is quoted. Parents are told 50% but since most of

the non-ponseti parents on the CF list have undergone some sort of surgery

it seems to me that it's more like 100% that the traditional methods don't

work. Maybe I'm just not hearing from those who have had it work - but I

don't remember anyone saying they haven't had any problems after

traditional casting. I think there are a couple of parents there (thinking

Simon and Deante) who had other methods but even they haven't had entirely

smooth sailing yet and they're still young so time will tell if they get

through without any surgeries. (don't mean to offend and

:~} )

I would also love to see 's info about other methods, that post he

sends is quite informative to find out that there are so many methods out

there yet the only one that really seems to work is the Ponseti method (and

in such a short time too!).

Anyway - thanks for posting this and yes... it does seem a long time in

the DBB but if that's what it takes then that's what it takes. It does

only get easier and if done consistently they really don't know any

different and seem to care less whether or not it's on. It's parents like

you who have dealt with this for such a long time coming here and posting

saying that we *can* get through it and it *does* go quickly that gives me

hope for doing this long term. Here I am posting to new parents who are

quite validly reeling at the thought of 23/7 for 3 mo's telling them it's

going to be over before they know it so I KNOW you're right and again thank

you for saying so :~}

Kori

Mama of

Kenton - 6/98

Merek - 3/00

Darbi - 3/28/03 - Rt. CF - DBB 12hr/d

(¨`·.·´¨)

`·.¸(¨`·.·´¨)

`·.¸.·´

May 3, 2004

Thank you Holly,

Your wonderful story could not have come at a better time for us. Zoe got her

FAB (I did not know DBB was out of date, won't use it anymore) Wednesday, so we

are going through the adjustments. I know it can only get better from here, but

it sure helps to hear it from experienced parents. I am so happy for , you,

and the rest of your family!!

Louisa

Zoe 2-22-04 rt uni cf

6-27-99

shelbytru dhtru@...> wrote:

Hello parents,

I have a daughter who is 4 years old now and has been a patient of

Dr. Ponseti's since she was 5 months old. We live in Michigan and

started initial treatment directly after her birth with a very good

ped. ortho specialist at a very well known hospital. Unfortunately we

did not know that the Ponseti method still exsisted as we were

informed that it was outdated and not used anymore. We went forward

with treatment and our daughter recieved 10 below the knee casts and

was nowhere near fully corrected and schedualed for surgery sometime

between 10 months and 1 year of age. Fortunately we signed up for

internet service at the time that turned 5 months old as we

were waiting for her to be old enough for surgery and I stumbled onto

Dr. Ponseti's hospital website. I could'nt believe what I was reading

and stumbled again into a section called Parents testimonials. There

were stories about newborn babies that had been successfully

corrected at the hands of Dr. Ponseti but that the window of

oportunity was only about until age of 3 months. I scrolled down and

found one story of a little girl who had gone to see him who was six

months old and also had successful treatment. (Hi Rose!:-) )My

husband and I immediately wrote to Dr. Ponseti. He called us on the

phone the next day (Saturday!) and we were off to see him a few days

later.

was successfully corrected by Dr. Ponseti with 6 full leg casts

and a tenotomy to each heal. She has been in the FAB since she was

about 8 months old and continues to wear it today. She turned 4 in

February of this year and we thought that she would discontinue the

brace but it was decided that she stay in until she is almost 5. I

must mention that had been taken out of the brace right when

she turned 3, only 2 months later I noticed something " different " in

her feet, intoeing of some sort and I immediately called Dr. Ponseti.

He told me to put her back into the FAB after seeing some pictures

that I sent him. Only a day or two later and her feet were back to

normal.

I have always been so careful with 's FAB wear, doing exactly

what Dr. Ponseti prescribed. I have gone though unsuccessful

treatment and all the heartache that it brought and somehow luckily

only brushed against the relapse subject. I can't stress the

importance of the FAB (jeez, I keep wanting to type DBB, for those

out there who remember when it was called that! :-) )and I can't tell

you in all the years that it has been in 's life how easy it

really has been for , for our family. She never knew anything

else, and when the day came that she did know what it felt like to be

free from it and had to go back into it, she understood the

importance of it by that time at only age 3! She easily accepted the

brace again and continues to do very, very well with it.

has been fully potty trained since a month or so before the age

of 3(my older daughter without clubfoot trained at exactly the same

time) and has had no limitations because of wearing the brace. Now I

think that can easily be different for each individual child, just as

it can for children without clubfoot. Some helpful advice....I let

her be the boss of the potty, we did use pull ups for quite a long

time and I always make sure that she used the potty right before

getting into bed, even to this day, so she does'nt need to go in the

middle of the night. Some nights she still needs to go, all she does

is call me and I take her, but that is very rare. To all the new moms

and dads just starting out I know that 4 to 5 years of brace wear

seems like a lifetime, I remember feeling exactly the same way. It

was the only part of the Ponseti treatment that I did'nt love. But I

can't tell you how fast it has all gone and it has'nt slowed

down a bit, no one knows she had any problems what so ever unless I

tell them and then they are amazed. is in swim class, plays

soccor and is going into ballet in the fall as well as preschool. It

truly is a small price to pay for her fabulous feet! I have also

learned an incredible amount about clubfoot and all that goes with it

and I have a tremendous respect for the amazing FAB and all that it

has done to help 's feet remain perfect.

Holly and (bilateral born: Feb.11,2000 moderately severe)

May 3, 2004

Our little girl was born with bilateral club feet 2-24-2004 and has been being

treated by a physician here in Columbus, OH. I spoke with Dr. Ponsetti this

afternoon and it seems as if our Dr. wasn't following his procedure exactly.

Our daughter, , received 6 semi rigid casts and 3 weeks of rigid casts

(following a tenotomy). She then received the Markel, open toe shoes, reversed

at 60 degrees, and the fixed DBB 6 inches (too short). Dr. Ponsetti said that

he always uses rigid casts and manual manipulations and tries to correct the

foot to 70 degrees, and he suggests the straight last boots with the plastizode

heel inserts with a wider bar. Our girl is wearing size 0000 shoes and Dr.

Ponsetti said that her feet are too small (for now) for the Mitchel Sandals, and

we could probably switch later on, once her feet grow a little. He then

referred us to Dr. Vonstein-a qualified Dr. in the Ponseti Method- in

Cincinnati, OH to follow up with. After speaking to our Dr., now will be

getting the staight last boots with the insert and an adjustable bar. Never

feel bad about questioning your doctor, if they were perfect they wouldn't need

malpractice insurance; knowledge is power. Do your homework and ASK questions!

Dr. Ponseti, YOU'RE AWESOME! Thank you for calling us.

Sincerely,

Dave

Sofia 2-24-2004