Back from Iowa: Update on Kavan & regression in toddlers...

[Guest guest]

Hello all! It was a quick trip, Kavan and I left Indiana Thursday at

1PM, made it to Iowa in 7 hours, slept at Best Western Canterbury Inn

and we were with " Papa Ponseti " (as we have affectionately always

called him)at 10AM on Friday.

A quick update if you missed our message a few weeks ago. Kavan was

successfully treated as infant by DR. P. We quit wearing the FAB

about a month before his 3rd b-day ( due to bad advice by a local

physician, and a momma of 8 that was too lazy to take him to Iowa

like i SHOULD have!). Kavan was born with bilateral cf, with the

right foot being more severe than the left. When he regressed, the

right foot was much worse than the left.

Two weeks ago, Dr. P. gave us little hope that casting alone would

correct the severity of the regression, esp. in the right foot. He

felt sure Kavan would need another tenotomy in the right foot (after

at least 3 castings) and gave us a 50% chance that he would still

need the tendon surgery.

Well... when Dr. P. saw his feet and saw him stand with heels FLAT to

the floor he burst into a huge grin and with that oh so unmistakeable

sweet voice said, " OH, Kavan, your feet look BEAUTIFUL and oh my

your heel cord has stretched beatifully, I have NEVER seen a toddler

respond soooooo well! " . AFter looking up to thank God, I cried on

Dr. P's shoulder with relief. Kavan's left foot was already

COMPLETELY corrected and his right was almost there, only requiring

ONE more cast!!!!!! Since the right still needed a cast, Dr. P. had

to recast the left since he could not go into the FAB right now,

however, he only casted the left up to the knee to give Kavan a bit

more freedom, yet still keep the foot in corrected position.

Dr. POnseti said Kavan will NOT require the tenotomy afterall, and

says there is now less than a 5% chance that he will need the surgery

either.... praise GOD! He is letting us take him in 3 weeks to a

local orthopod who traind under him, and allow him to take the casts

off and then straight into the FAB 20 hours/day.

TO THOSE OF YOU WORRIED ABOUT RELAPSE: Obviously Kavan is a perfect

example of JUST how important the FAB is. Dr. P. and Dr. Merc. both

explained AGAIN to me, that it is only NOW that we have the data from

the 'original' kiddos like Kavan (which was when the POnseti

technique was really making its resurgence)that we can really know

what we need to about the possiblities of and treatment for

regression. Kavan will wear his FAB until age 5, and then I will

STILL have to hear from Dr. P. that he may come out of it. From a

mother who has been through it all, I would like to make ONE

suggestion to you mothers of cf infants. The FAB bar becomes as much

routine as changing their diaper and putting on pj's for bed.. it is

so simple and such a guarantee of not having to watch your toddler

suffer dragging hip to toe casts around while trying to keep up with

his 7 brothers/sisters in our case! Now that we know regression is

possible with a large growth spurt between 3-5, why NOT keep the bar

on? I only wish I would have been armed with the blessing of the

knowledge that you all are, as my son would have been better for it.

Please let me know if I can answer any questions or have left

anything out of our story that could help ANYONE.

With thanks and praise,

Tina and Kavan (born: 6-25-00 w/ bilateral cf)