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

[Guest guest]

Hello, I just read your post. Our doctor instructs wearing the FAB

for 2 years. Thanks to this forum and good parents like you who

share stories we will keep the shows for a longer period.

Thanks from the bottom of my heart (-:

Idit, mom to Oshri, 8 month. BL ClubFoot, heavy DBB for 16 hours, 2

teeth. http://truly_clubfoot.tripod.com

> 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)