Update on Kavan& info and WARNING for all cf parents!!

[Guest guest]

Hello! A brief update for any of you who don't know us. My son,

Kavan, was born 6-25-00 w/ bilateral cf.

-Initially treated locally w/ manipulation/short leg casts by local

pediatric orthopod who used the 'KITE' method (totally unsuccessful)

-Miraculously found Dr. Ponseti, went to Iowa at 6 weeks old, made

five trips to Iowa in 31 days, and after 4 sets of casts, bilateral

tenotomy, Kavan was fully corrected..

-Wore FAB faithfully until a month before Kavan turned 3. Local ped.

felt it fine to DC use of bar, and with 8 kids under age 13,

including Kavan and his 3 year old twin sister, a two year old and a

new baby, made the DREADFUL MISTAKE to not seek Papa Ponseti's

advise/wisdom on that one!!

-Regression in both feet, right more severe.

-Back to Iowa in March of 2003, Dr. P. decided to 'try' casting, but

felt there would be 50% need of second tenotomy and ATTT in right

foot. HOWEVER, after the first casts were removed in two weeks, left

foot was COMPLETELY corrected and right (more severe)was almost there

and flexibility in heel cord totally AMAZED Dr. P. for a child of 3

1/2. Dr. P. sent us home with last set of casts to be worn for 3

weeks and said NO TENOTOMY would be needed and instead of a 50%

chance of tendon transfer, it was much less than 5% now. Told us to

have casts taken off locally and start the FAB for 18hrs/day for the

first month, and we don't have to return to Iowa until June.

**Well, our original local orthopod had watched Kavan's progress ( as

I continued to take him and SHOW him, as he thought Dr. P. was

a 'zealot' as he called it and that the technique would NEVER work)

and a six months after he saw Kavan's correction he flew to Iowa and

was trained under Dr. P. at one of his learning symposiums. It was

an answer to prayer and a total SHOCK to me! I had also taken four of

the other local kids born after Kavan w/ clubfoot and gotton them to

Iowa as well.

So... Dr. P. suggested I take Kavan back to this doc to have the

casts removed yesterday. I did and Kavan's feet are BEAUTIFUL and

totally corrected!!! HOwever, when I explained to our local ortho

that Dr. P. was changing his FAB time wearing mandates, due to a few

toddlers suffering regression from huge growth spurts after coming

out at 3 like my son, he informed me that he only has his patients

that he treats with the Ponseti technique he learned in Iowa, wear

the FAB until 18 mos.!!!!!!!!!!!!!!!!!!!!!!!! I about FLIPPED out! I

quickly took my 'soapbox' and said, oh no... this can't be! I

explained that Dr. P. would NOT adivse/feel comfortable this with any

child. I advised him to get ahold of Dr. P. and Dr. Merc. and get

the info he appears to be lacking and TOLD him to use OUR story of

Kavan's regression for the parents who say the bar is not possible

for that long, yadda, yadda.

**FOR ANY OF YOU BEING TREATED BY DR. PONSETI (U. OF IOWA)TRAINED

ORTHOPODS: MAKE sure that you know EVERY aspect of how Dr. Ponseti

wants his technique used. Beautiful casting and correction is only

the FIRST half of successfully correcting this problem; the FAB use

must be adhered to 100% to maintain what you and your child have

endured with the casting/tenotomy!

AS I explained to our local orthopod (after my blood pressure went

down and I got over the shock/dismay of his incorrect use of the FAB

time), I understand the FAB seems to be a real 'problem' to some

PARENTS. HOwever, it really is the parents' attitude toward the FAB

that determines how the baby/child will respond, just like with most

things in parenting. IF it just becomes a part of bedtime/naptime

routine like it has for many of us, it really is NO big deal. WHAT

is a BIG DEAL is having to have your toddler REGRESS and having to

RECAST at 3 1/2 like I did with my son! What IS a BIG DEAL is having

to battle with the guilt as he drug those casts around for 6 weeks

that IF ONLY I would have consulted Dr. P. first and continued with

the FAB, my son would not have had to endure this. I guess my

empathy toward complacency and complaining about the FAB use until 4-

5 years is pretty non-existant because I have not 'imagined' but had

to LIVE with regression caused SOLELY from NOT doing just that and

also is not the use of the FAB even if until age 5 ( it will not be a

day sooner for our son) a small price to pay to avoid surgery if

possible???????????????????

PLEASE don't become complacent just because your Orthopod may have

been trained in Iowa under Dr. P. Be informed and know what you

SHOULD be expecting, from this website at the least, and help us make

all the orthopod's using Dr. Ponseti's incredible technique

accountable to using it the way it was designed and the only way it

will truly make the difference Dr. P. knows it can!