First Casting and Crying

December 1, 2005

Congrats on the of your daughter. My granddaughter was born 11/6. She just

got her 3rd cast yesterday. With her 1st one she cried a lot the first 24 hours.

The 2nd one, it only lasted about 1/2 the day, and not nearly as bad as the

first time around. Yesterdays casting was even less than the last time. It

seems like just that first few hours upsets her, and then she is adjusted to

them

again. How is your daughter doing today ?

DeeDee

California

December 1, 2005

Craig you sound like just the sweetest daddy in the world

Unconsolible crying is a red flag. A little crying and fussing might be normal

for some kids during the casting and maybe until the next day some what, but not

what you're describing. I'd venture something bigger is happening here that's

probably not all good.

2nd - only bracing to 2 years and a 40% chance of surgery is NOT the ponseti

method at all. You should be able to expect Ken & Barbie results on your

daughter's feet in the end, not surgery.

I would go directly to Iowa ASAP.

If necessary there is the Angel Flight Option of travel (and other options like

that) and also there is Dr. Dobbs in St. Lousis who works out of a Shriners

Hospital if payment is a struggle.

Best of Luck and Good for you looking elsewhere for care!

s.

First Casting and Crying

Hello all,

My wife and I had our fourth child, Salem, on 11/15 and, thankfully,

she is healthy except for the bilateral clubfeet. Both feet are

anatomically correct (why am I flashing to thoughts of Ken and Barbie

on this???), but positionally incorrect.

My wife, being a Pharmacist and exceptionally thorough, researched

correction of a clubbed foot and found the Ponseti method to be the

best bet. We live in Utah and there only seems to be a small group of

doctors that use the Ponseti method religiously (yes, the pun of Utah

and religion is intentional). The only one that we could get access

too was at the Shriner's Hospital in Salt Lake City: Doctor Santora.

Well, to shorten this up a bit, yesterday we consulted with Dr.

Santora and he seems to follow the Ponseti method very closely... to a

point. His description of the casting, tenotomy and bracing seems to

be exactly as Dr. Ponseti describes, except on length of bracing (only

up until ~2 years old). He also stated that about 40% seem to have

recurrence needing some sort of surgery as they get older, around 5

years old or so. This seemed quite high since Dr. Ponseti suggested

only a 10% recurrence. Anyone else see the seemingly obvious

correllation between bracing duration length and recurrence?

So, despite my reservations as to Dr. Santora's stated recurrence,

which I assume have to do with bracing, we decided to let him cast and

begin the correction of Salem's feet.

Salem, which means " peace " , has been very much like her name: she is

quiet, not fussy and actually sleeps most of the night already -- a

big change from our first 3 children. During casting, my wife nursed

while the cast was applied to the left leg... no problem and no

crying. When they prepared to cast the right leg, however, Salem began

to cry... not just crying as she rarely does, but _wailing_. Dr.

Santora assured us that the crying was just a function of the

discomfort of having a new cast and that no pain was being felt.

Wanting to believe the good doctor, my wife nursed Salem until she

fell asleep and the second cast was put in place.

Since the casts have been put on, Salem has not acted like her name at

all. When she is awake, she is wailing. It seems that she will cry

until she is just too tired to cry anymore, then drop off for a little

while. We have tried several different positions, singing, gently

rocking, walking, riding in the car, etc., but she is not to be

quieted when awake. Her toes seem to be a healthy pink so we do not

feel the casts are restricting circulation. My wife, being quite

distressed over the unusual crying, even called Dr. Ponseti (who

answered and spoke with her!!!!), who didn't go so far as to say that

the casts were on incorrectly, but did state that he didn't like it

when the child cries and that he wished that we lived in Iowa so he

could see the baby.

So, now my wife is talking of going to see Dr. Ponseti to get things

" fixed " . We have family not _too_ far away from Iowa City, so we can

logistically send my wife and child if necessary.

My question to the group is this: has anyone had similar problems with

an unconsolable child? What did you do and how did you get things to

a comfortable state?

Sorry for the long post but I feel that the history may be useful to

others doing research. Also note that it's 5:30 am and I have been

taking care of the baby for some time and so spelling, etc. are going

to suffer .

-Craig

December 1, 2005

Hello Craig,

Something is likely wrong. The baby should not be screaming constantly.

Sometimes they are a little uncomfortable and crying for several hours just

after the casting, but that usually goes away. If it has been a full day and

she is still screaming, GET THOSE CASTS OFF ASAP, she is in severe pain. Also,

noone knows your baby like you. Use that parenting instinct. If you feel

something is wrong, then there probably is.

If casting is done correctly, it shouldn't be painful for the baby. Sometimes

unskilled doctors think they know how to manipulate the bones in the feet

correctly, but they don't. That is the most important part of the casting

process. This can cause more damage to the feet and also cause a lot of pain

for the baby.

It sounds like this doctor is swaying from the true method. Recurrence only

happens in less than 10%, if the parents are strict in following the brace

prototcol. Also, 2 years is too short of time. Now, Dr. Ponseti recommends

using the brace until nearly 4 years.

If you have the opportunity to have Dr. Ponseti treat your daughter,

definitely do it. He is certainly the master.

HTH. Good luck and keep us posted.

freckledpenguin wrote: