Re: Many concerns-told today that son's foot may not be fully corrected

July 11, 2006

Well, this is a new one! Thankfully, we are always up for a challenge over

here--and hopefully some of what we come up with will help you and out.

How does 's foot look and feel to you? Does it look very different from

his other foot (am I correct that he has just one clubfoot?)? Does it look much

different from his twin's " normal " feet? Is it clear to you that there is still

something fishy with this foot or does it seem to you to be working well? Does

he tolerate the FAB well? From what you have described so far, it does not seem

to fit the general description of a run-of-the-mill atypical or complex clubfoot

(these feet are described as fat and sausage-like, generally with a deep

transverse crease across the sole--an experienced Ponseti practitioner will

recognize one and know how to modify the protocol to obtain the best possible

results). Of course, there are many ways in which a clubfoot can be considered

" atypical " .

Your best bet, really, is to send a note to Dr Ponseti detailing 's

treatment thus far. It will help him if you send this series of pictures:

1 - from front and back (directly, not off to either side) with him

standing on a hard surface. View should be from the knees down (get your camera

down on the floor to take these pictures)

2 - from each side with him standing (same position as before, just

showing the clubfoot from the sides)

3 - the soles of his foot

4 - profile of the foot with you using your whole palm to push his foot/toes as

far up towards his head as possible. Keep the sole of the foot flat with your

palm. You want to show how far past " L " (0 degrees or neutral) his

foot can dorsiflex.

Hopefully Dr Ponseti will be able to tell you what he is seeing in this little

foot and can counsel Dr Scher on how best to treat it. It doesn't sound like Dr

Scher is talking surgical correction--but it doesn't sound like he is very

optimistic about 's long-term prognosis either. Over the past few years

Dr Ponseti and his colleagues have been refining the protocol so that they have

been able to correct every single foot that has come their way. There is

definitely hope that things will turn out just fine.

Please let us know if there are other questions we can help you with. And

please let us know how things progress for your little fellow.

All our best,

Naomi

The Family, North Coast of California

Naomi Hannah(2/21/1) Jonah(6/20/3, corrected BCF, FAB 12-14/7)

mikesmomsue wrote: My

son, , has been under the care of Dr Scher at HSS in NYC.

He is now 9 months old and we have been told that there is a

secondary component to his club foot--that it is atypical. The top

of his foot, 2nd through 5 toes, up to his knee are not working

together with the rest of the foot. I will provide as much

background as possible and IF anyone can give us advice that would

be greatly appreciated. Our son, is Twin B... his Twin has no

medical issues. He was diagnosed with clubfoot prenatally upon which

we researched the Ponseti Method and decided to go with Dr Scher.

spent two weeks in the NICU upon birth for other medical

issues and was first casted at 4 weeks. Casting went well...he did

all the right protocol 24/7 shoes and bars. About 3 months ago the

dr. mentioned that his foot seemed atypical... he was tested by MRI

for a tethered spine and it came back negative.He assigned 16 hours

in the shoes and bars (), 4 hours in an AF0, and the other

hours out of them all.He also suggested that we start looking into

PT. At our last visit, 5 weeks ago... he mentioned that his gait may

not ever be normal and that he has 4 other cases that are similar to

's and that the child may need long term bracing and will not

walk properly.He also mentioned future casting may be needed. We

are scheduled to return for a " checkup " next week... and I have no

idea where to go from here. Do we look into talking to Dr. Ponseti,

do we look into a neurologist (he already saw one to rule out the

tethered spine), are we doing all we can do? If anyone has any

ideas/experiences to share please help.

---------------------------------

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July 11, 2006

You may want to contact Dr. Ponseti and also seek a second opinion in

NYC. We go to Dr. Feldman at NYU. Did Scher mean that your son's

foot is atypical as in " not typical " or as in the little fat,

sausagey, crease-filled feet? In any case, PT would not be a bad

idea. Where do you live? We get PT & OT via Early intervention from

St. 's in Bayside (Queens). It's great b/c it is free and they

come to the house!! It can't hurt! Let me know if you want the

contact info.

Mommy to (12/15/04)

>

> My son, , has been under the care of Dr Scher at HSS in NYC.

> He is now 9 months old and we have been told that there is a

> secondary component to his club foot--that it is atypical. The top

> of his foot, 2nd through 5 toes, up to his knee are not working

> together with the rest of the foot. I will provide as much

> background as possible and IF anyone can give us advice that would

> be greatly appreciated. Our son, is Twin B... his Twin has no

> medical issues. He was diagnosed with clubfoot prenatally upon

which

> we researched the Ponseti Method and decided to go with Dr Scher.

> spent two weeks in the NICU upon birth for other medical

> issues and was first casted at 4 weeks. Casting went well...he did

> all the right protocol 24/7 shoes and bars. About 3 months ago the

> dr. mentioned that his foot seemed atypical... he was tested by MRI

> for a tethered spine and it came back negative.He assigned 16 hours

> in the shoes and bars (), 4 hours in an AF0, and the other

> hours out of them all.He also suggested that we start looking into

> PT. At our last visit, 5 weeks ago... he mentioned that his gait

may

> not ever be normal and that he has 4 other cases that are similar

to

> 's and that the child may need long term bracing and will

not

> walk properly.He also mentioned future casting may be needed. We

> are scheduled to return for a " checkup " next week... and I have no

> idea where to go from here. Do we look into talking to Dr. Ponseti,

> do we look into a neurologist (he already saw one to rule out the

> tethered spine), are we doing all we can do? If anyone has any

> ideas/experiences to share please help.

>

July 12, 2006

I am sorry to hear your son is having so many issues. Poor thing. I

haven't read other posts, but I would contact Dr. Ponseti just to see if he has

additional ideas. It certainly couldn't hurt. He and Dr. Scher can work

together to hopefully find a solution for your little one.

HTH.

mikesmomsue wrote:

My son, , has been under the care of Dr Scher at HSS in NYC.