Re: Ponseti Treatment in NY

[Guest guest]

Mike,

Welcome and congratulations on your upcoming addition. I'm and

my almost 3 year old son Jakob was born with

bilateral clubfoot. We didn't know about Jakob's feet before he was

born, even though I'd had a few ultrasounds (some were done in the OB's

office and weren't very in-depth and 2 were done at a local hospital and

were more in-depth), so I don't know the possibility of having a false

result on them.

Please let us know what the doctor in Boston says and keep us posted on

what you and your wife decide to do

Mike wrote:

>

> My wife, Debi, is due March 28. The baby was diagnosed with bilateral

> clubfoot during an ultrasound at 22 weeks. This board has been very

> helpful in educating us on clubfoot. Just after the diagnosis our

> emotions ranged from denial to doubt and worse. We didn't know if we

> had done something wrong. Now it seems like just another problem we

> will need to deal with.

>

> We met with Dr Lehman in New York yesterday and he was able to answer

> all of our questions. He was very convincing in explaining why

> the " Iowa " method is superior to the " Kite " method, before meeting

> with him the results seemed to be too good to be true.

>

> He reviewed our ultrasound films and wasn't convinced that the baby

> had bilateral clubfoot, in fact, he wasn't sure about either foot. He

> said that some studies have found as many as 30% of ultrasound

> diagnoses are either false-positives or the clubfoot is very mild and

> doesn't require treatment.

>

> Has anybody heard of a false-positive ultrasound?

>

> So we have another 3 months to wait. We are very confident that going

> to NY for Ponseti treatment is the way to go.

>

> We live just west of Boston and the drive to and from NY was a

> breeze, less than 4 hours each way. I guess they do have traffic

> sometimes and that could make the trip alot longer.

>

> Dr Lehman said that the doctors at Children's Hospital in Boston are

> considering switching to Ponseti but haven't yet. We're meeting with

> the head ped ortho at Children's in a couple of weeks so it will be

> interesting to hear what a non-Ponseti doctor has to say. Maybe they

> will switch by April.

>

> Thanks for all the information. We'll keep you updated.

>

> Mike and Debi

>

>

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[Guest guest]

Welcome,

Yes, I have heard of false positives but am not sure of statistics

for those findings. I did read a report that discusses 'transient'

clubfoot diagnosis via ultrasound as well. (meaning it came-it went-

it came again..)

Dr. Lehman and Dr. Feldman (and I believe a Dr. VanBosse) are

practicing the Ponseti technique and have been for about 1 year now.

If the doctors in Boston do switch, keep in mind that they will be

less experienced at using it (which doesn't mean you won't get good

results necessarily. I just want to make you aware of it) From what

I understand (and I could be wrong here) DR. Lehman has been tracking

his use of the Ponseti technique with a rating system that is used by

some Orthos. He should be able to fairly accurately tell you what

his results have been like this past year using the Iowa method.

There is also a parent here I think (maybe they are at the Parents

Place Bulletin boarddd) who has seen Dr. Feldman, and there maybe

someone else around who has seen Dr. Lehman. You could try to put a

message out there to those parents to find out their experiences.

I'm sure that the not knowing is troubling; but planning ahead will

only make you more prepared should you need to pursue treatment, and

if not....well, you'll be able to breath a HUGE sigh of relief.

Either way, you're doing your homework and that really is the BEST

thing you can do right now. Welcome again to our group and I hope

you find what you need here. If not, ask away. This really is an

awesome group of parents and I'm sorry that I can't be here more

myself.

Lori Stime

Annika Gillam 3/30/99

>

> My wife, Debi, is due March 28. The baby was diagnosed with

bilateral

> clubfoot during an ultrasound at 22 weeks. This board has been

very

> helpful in educating us on clubfoot. Just after the diagnosis our

> emotions ranged from denial to doubt and worse. We didn't know if

we

> had done something wrong. Now it seems like just another problem we

> will need to deal with.

>

> We met with Dr Lehman in New York yesterday and he was able to

answer

> all of our questions. He was very convincing in explaining why

> the " Iowa " method is superior to the " Kite " method, before meeting

> with him the results seemed to be too good to be true.

>

> He reviewed our ultrasound films and wasn't convinced that the baby

> had bilateral clubfoot, in fact, he wasn't sure about either foot.

He

> said that some studies have found as many as 30% of ultrasound

> diagnoses are either false-positives or the clubfoot is very mild

and

> doesn't require treatment.

>

> Has anybody heard of a false-positive ultrasound?

>

> So we have another 3 months to wait. We are very confident that

going

> to NY for Ponseti treatment is the way to go.

>

> We live just west of Boston and the drive to and from NY was a

> breeze, less than 4 hours each way. I guess they do have traffic

> sometimes and that could make the trip alot longer.

>

> Dr Lehman said that the doctors at Children's Hospital in Boston

are

> considering switching to Ponseti but haven't yet. We're meeting

with

> the head ped ortho at Children's in a couple of weeks so it will be

> interesting to hear what a non-Ponseti doctor has to say. Maybe

they

> will switch by April.

>

> Thanks for all the information. We'll keep you updated.

>

> Mike and Debi

[Guest guest]

> Has anybody heard of a false-positive ultrasound?

Hello Mike and Debi,

I was just reviewing the literature on USS and clubfeet as one of the

radiologists at my center and I are interested to see if we can

follow the changes during Ponseti manipulation with USS. I came

across a number of prenatal USS abstracts (haven't gone so far as

read the papers yet) but many of them commented on a very high false

positive rate. Whether this is truly " false " or if the feet are

transiently in a " clubbed " position and then move into an anatomic

position with further growth and development I'm not sure.

son

[Guest guest]

Hi Mike welcome to the board. My name is Tina and my dd was born with a

right club foot. I just wanted to comment on the false positive question

you asked. I had an ultrasound at 19 weeks pregnant, from that they

thought she had bilateral club feet. At 26 weeks I had another us. This

one showed unilateral club foot. I had a third us a few weeks after that

also showed unilateral club foot. So with our experience the first

diagnosis was wrong.

Tina & Chloe

On Thu, 04 Jan 2001 05:55:10 -0000 " Mike " writes:

>

> My wife, Debi, is due March 28. The baby was diagnosed with

> bilateral

> clubfoot during an ultrasound at 22 weeks. This board has been very

>

> helpful in educating us on clubfoot. Just after the diagnosis our

> emotions ranged from denial to doubt and worse. We didn't know if we

>

> had done something wrong. Now it seems like just another problem we

> will need to deal with.

>

> We met with Dr Lehman in New York yesterday and he was able to

> answer

> all of our questions. He was very convincing in explaining why

> the " Iowa " method is superior to the " Kite " method, before meeting

> with him the results seemed to be too good to be true.

>

> He reviewed our ultrasound films and wasn't convinced that the baby

> had bilateral clubfoot, in fact, he wasn't sure about either foot.

> He

> said that some studies have found as many as 30% of ultrasound

> diagnoses are either false-positives or the clubfoot is very mild

> and

> doesn't require treatment.

>

> Has anybody heard of a false-positive ultrasound?

>

> So we have another 3 months to wait. We are very confident that

> going

> to NY for Ponseti treatment is the way to go.

>

> We live just west of Boston and the drive to and from NY was a

> breeze, less than 4 hours each way. I guess they do have traffic

> sometimes and that could make the trip alot longer.

>

> Dr Lehman said that the doctors at Children's Hospital in Boston are

>

> considering switching to Ponseti but haven't yet. We're meeting with

>

> the head ped ortho at Children's in a couple of weeks so it will be

> interesting to hear what a non-Ponseti doctor has to say. Maybe they

>

> will switch by April.

>

> Thanks for all the information. We'll keep you updated.

>

> Mike and Debi

>

>

>