Re: New, but not so new

[Guest guest]

Well not to rain on any parades here but I'd strongly suggest heading out some

place to see a qualified Ponseti Method doctor. (You knew I'd say that!)

I have often feared one of my boys breaking a leg or slicing his foot open on

something - and figured if it happened we'd be packing it in ice and driving to

Iowa City to get it casted there so the club foot condition would not be

jeapordized in the healing process.

As much as anyone can like their doctor, and as sympathetic as any doctor can

be, friendliness is just not a substitute for good care...or proper care I

should say.

The relapse - can you say what you think started causing that? Were you strict

with your bracing? How many hours a day was he in the brace and did you follow

the Ponseti Protocol with those hours, was it set correctly at the right

angles,etc? I have the impression you had quit using the brace, is that so?

In most cases, a relaps shouldn't take six weeks to correct. A completely

virgin cf almost never takes six weeks - so most relapse corrections only take

two or three at most. This all tells me that your doctor is probably not really

doing things right. Right enough to get some progress, but not right enough to

actually fix anything for the long haul.

Stretching at home is really non-productive too. This is what the FAB (DBB) is

for, to maintain that correction gained in the casts. There is really no

substitute for that.

I have no clue what an SMO is, but have never in my seven years of cf life heard

of it being used on club foot.

After all this, it may end up he needs surgery and in that event what you do is

start researching different types of surgeries. Like casting and bracing,

they're all different and produce different results with varryign degrees of

quality.

I would see a qualified Ponseti doc first though, and let them attempt

re-casting and FAB use before resorting to an operation.

Remember this: if you try recasting/FAB with the right doctor, really you don't

lose anything. You can always operate later... But once you let someone cut in

to his feet, that can NOT be un-done and often leads to hideous results in later

life.

If we can help you find and get to a ponseti doc let us know!

s.

New, but not so new

Hi there,

I've been reading and occasionally posting on the clubfoot group

board for about 2 years now. I have a son (21 mos.) with a right

clubfoot. He has been treated with casts, 2 tenotomies and a DB

bar. He has currently been fitted for a SMO (supramaleolar

orthotic). My son's treatment has been a series of snafus. There's

a long long story behind that culminating with him breaking his

right leg (just above the ankle) shortly before Christmas. His foot

looks 110% better than when he was born, but we're still not out of

the woods.

Long story short, here's where we're at. Back in Oct. he seemed to

be having a relapse. His Dr. suggested surgery. We didn't want to

go that route so Dr. began casting his foot again and we did this

for about 6 weeks. The foot made great strides and after

Thanksgiving it was decided that casting was over and I would

continue stretching his foot at home daily. Literally the next day,

he broke his leg. His leg was in a cast for 4 weeks with no

stretching or continued therapy for his clubfoot until the break

healed. Now he's out of the cast, I'm stretching his foot again

daily, and he's been fitted for a SMO but I feel like all the

progress we made before the break has been lost.

I truly don't want to have to resort to surgery, but I wonder where

we're going from here. I love his Dr. She's been wonderful working

with us and listening to our concerns and choosing treatment options

that respect our reservations about surgery up to this point, but I

just don't know where we're headed anymore. Does anyone have some

feedback for me? Maybe a similar story of a challenging foot to

fix? We've come SO far. I don't want to give up! But I'm worried.

Thanks for the sympathetic ear.

(Mother of 3/30/04)

[Guest guest]

Thanks for the response

I live in Southern California; Los Angeles/Orange County areas. Any

referrals for second opinions are welcome. I spoke to my husband last

night and we feel we're close to that point. If anyone has any

experience with Dr.s in this area that they would recommend, we would

appreciate any information. A Ponseti certified Dr. would be great.

Yes, I have considered taking to Iowa. It just seems so

overwhelming to think about. Does Dr. Ponseti still practice and see

patients, or would I see other doctors?

[Guest guest]

Any referrals would be great. I live in Southern California (Los Angeles/Orange

County area). Can I get some more information on what exactly they do in Iowa?

number23 wrote:

Well not to rain on any parades here but I'd strongly suggest heading out some

place to see a qualified Ponseti Method doctor. (You knew I'd say that!)

I have often feared one of my boys breaking a leg or slicing his foot open on

something - and figured if it happened we'd be packing it in ice and driving to

Iowa City to get it casted there so the club foot condition would not be

jeapordized in the healing process.

As much as anyone can like their doctor, and as sympathetic as any doctor can

be, friendliness is just not a substitute for good care...or proper care I

should say.

The relapse - can you say what you think started causing that? Were you strict

with your bracing? How many hours a day was he in the brace and did you follow

the Ponseti Protocol with those hours, was it set correctly at the right

angles,etc? I have the impression you had quit using the brace, is that so?

In most cases, a relaps shouldn't take six weeks to correct. A completely

virgin cf almost never takes six weeks - so most relapse corrections only take

two or three at most. This all tells me that your doctor is probably not really

doing things right. Right enough to get some progress, but not right enough to

actually fix anything for the long haul.

Stretching at home is really non-productive too. This is what the FAB (DBB) is

for, to maintain that correction gained in the casts. There is really no

substitute for that.

I have no clue what an SMO is, but have never in my seven years of cf life heard

of it being used on club foot.

After all this, it may end up he needs surgery and in that event what you do is

start researching different types of surgeries. Like casting and bracing,

they're all different and produce different results with varryign degrees of

quality.

I would see a qualified Ponseti doc first though, and let them attempt

re-casting and FAB use before resorting to an operation.

Remember this: if you try recasting/FAB with the right doctor, really you don't

lose anything. You can always operate later... But once you let someone cut in

to his feet, that can NOT be un-done and often leads to hideous results in later

life.

If we can help you find and get to a ponseti doc let us know!

s.

New, but not so new

Hi there,

I've been reading and occasionally posting on the clubfoot group

board for about 2 years now. I have a son (21 mos.) with a right

clubfoot. He has been treated with casts, 2 tenotomies and a DB

bar. He has currently been fitted for a SMO (supramaleolar

orthotic). My son's treatment has been a series of snafus. There's

a long long story behind that culminating with him breaking his

right leg (just above the ankle) shortly before Christmas. His foot

looks 110% better than when he was born, but we're still not out of

the woods.

Long story short, here's where we're at. Back in Oct. he seemed to

be having a relapse. His Dr. suggested surgery. We didn't want to

go that route so Dr. began casting his foot again and we did this

for about 6 weeks. The foot made great strides and after

Thanksgiving it was decided that casting was over and I would

continue stretching his foot at home daily. Literally the next day,

he broke his leg. His leg was in a cast for 4 weeks with no

stretching or continued therapy for his clubfoot until the break

healed. Now he's out of the cast, I'm stretching his foot again

daily, and he's been fitted for a SMO but I feel like all the

progress we made before the break has been lost.

I truly don't want to have to resort to surgery, but I wonder where

we're going from here. I love his Dr. She's been wonderful working

with us and listening to our concerns and choosing treatment options

that respect our reservations about surgery up to this point, but I

just don't know where we're headed anymore. Does anyone have some

feedback for me? Maybe a similar story of a challenging foot to

fix? We've come SO far. I don't want to give up! But I'm worried.

Thanks for the sympathetic ear.

(Mother of 3/30/04)