7 MONTHS AND A WAYS TO GO

[Guest guest]

Hello,

I want to extend my sympathies to you for this troubling experience you're going

through with your baby.

I have 3 sons, all three have bilateral clubfoot. Myself and the 1,000 (yes,

one-thousand!) members of this group can assure you that your child doesn't need

all these surgeries.

Yes, the heel cord lengthening is part of the Ponseti Method, but in most cases

that is done in infancy, non-surgically with the parent's present in the room

with the baby - it takes about ten minutes. It is the last phase of correction

prior to using the Foot Abduction Brace.

Your doctor seems to be trying his darndest but he obviously isn't a doctor who

knows how to treat clubfoot. Even the most severe clubfeet can be corrected

nonsurgically nearly 100% of the time when treated by a doctor who has

experience in the Ponseti Method.

I want to urge you to find your way to Iowa. I know - it sounds impossible!

Time, Money, Bla Bla Bla. There's hundreds of us here who thought the same

things once upon a time. Believe it or not though, where there is a will, there

is a way! We can help!

Angel Flights and other organizations can fly you there for free or reduced

cost. Once in Iowa you can stay at the Mc house just a few blocks

from the clinic. That is $15 a night - but if you cannot pay they will not

force you to. The RMD has great rooms, kitchens, food, toiletries,

transportation....everything you could need to stay out of state with your

child.

Dr. Ponseti and his highly trained staff can recast your child and straighten

his feet.

Now the obvious question: What can they do that your current doctor did not /

can not?

The Ponseti Method is different because fifty or so years ago Dr. Ponseti

discovered that if he moves the baby's bones in a very sequential manner, they

all fall in to place as a normal foot. Sounds simple enough but the majority

of doctors fail to do this in the right order. The foot is moved only one step

at a time, casted, then moved to the next sequence, casted...the average is five

casts, five days apart. The troublesome feet may take up to nine casts but that

is really rare. The key though, is the sequence of events - that each teeny

tiny bone is moved in a certain order so the foot eventually re-gains a natural

anatomy that can continue to grow in to adulthood like any other normal foot.

There are years worth of follow up studies proving this works.

The brace - the shoes on a bar - (DBB / FAB) does NOT correct a foot. It's

purpose is to maintain the correction gained through casting. It's not designed

nor used to do any correction on it's own. That your child has problems with it

is a big indicator your child's foot was not ready for the brace. A non

corrected foot in a FAB is painful and troublesome.

2nd best option is to travel to St. Louis Missouri to see Dr. Dobbs at the

Shrine hospital. Dobbs is highly trained under Dr. Ponseti, and the Shrine

provides free care. Angel Flights could take you there as well

(angelflights.org), and there are Mc Houses, etc there also.

At 7 months old, your child still has a great chance of being corrected

non-surgically and a great chance to live out his life on normal feet but you

have to avoid any more surgeries and get to a qualified doctor right now.

Remember he'll be using these feet for the rest of his life! Once the surgeries

begin, they only get worse. You can't go back from a surgery.

Please let us help you find your way to a Ponseti doctor.

Sincerely,

ee

Mother of 3 Clubfooted Sons:

- Bilateral Club Feet April 1998

Everett - Bilateral Club Feet September 2003

Garrison - Bilateral Club Feet March 2006

7 MONTHS AND A WAYS TO GO

My son is 7 months old. He was born with a severe case of club

foot. We did the serial casting starting when he was 2 days old.

We did that for approximately 12 weeks. At that time he had his

first tendon lengthening surgery. After surgery, he was casted for

the 3 week period and then we were told he needed the orthopedic

shoes. We tried the shoes for 12 more weeks. They kept falling off

and they weren't doing what they were supposed to do, they weren't

correcting his foot. So the doctor said we needed to do another

tendon lengthening surgery (this one they lengthened the tendon that

elongated the big toe). After surgery he was casted for 2 weeks.

After those casts came off, the foot still wasn't coming up (to a

right angle), so we are back to casting weekly. Our most recent

appointment was the Monday before the 4th of July and the doctor

said that the casting isn't giving the results that he had hoped

for, so we may have to do a third tendon lengthening surgery....this

time on the peroneus longus tendon. I'm starting to wonder how many

more of these surgeries we are going to have to go through. I've

tried to find other information on the web, but there is so much

that is not known about this deformity.

Anyone have any reassuring input/advice?

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