Re: Interested in late walkers

[Guest guest]

At 10:31 PM 3/28/2004, you wrote:

.. Here feet are still not in a perfectly corrected position with

her heels slightly pulled up and she is not walking yet.

***************************************************************

it sounds like she isn't corrected fully. Have you consulted with Dr.

Ponseti on this? Send him some pictures, describe your treatment and ask

his opinion. He is always willing to consult via email.

I would absolutely try more casting before botox. I know some have used it

(don't know that much about it though) but if casting might help why not

see if it might first? At least get another opinion from another Ponseti

Dr. She's still young, and other children have not walked at that age-

even without severe bilateral CF. I wouldn't let that get you

worried. It's the correction I'd be concerned about. How long has she

shown signs of either not being fully corrected or relapsing? Was she ever

fully corrected? Does she pull to stand? How does she stand? You can

take pics holding her in a standing position, front and back for him

IIRC. Might also include a pic of her not standing too. What is the DBB

set at?

The information to contact Dr. Ponseti is on this website

http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html

contact information:

http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/contact.html

Kori

Mama of

Kenton - 6/98

Merek - 3/00

Darbi - 3/28 - Rt. CF - DBB 14hr/d

(¨`·.·´¨)

`·.¸(¨`·.·´¨)

`·.¸.·´

[Guest guest]

At 10:31 PM 3/28/2004, you wrote:

.. Here feet are still not in a perfectly corrected position with

her heels slightly pulled up and she is not walking yet.

***************************************************************

it sounds like she isn't corrected fully. Have you consulted with Dr.

Ponseti on this? Send him some pictures, describe your treatment and ask

his opinion. He is always willing to consult via email.

I would absolutely try more casting before botox. I know some have used it

(don't know that much about it though) but if casting might help why not

see if it might first? At least get another opinion from another Ponseti

Dr. She's still young, and other children have not walked at that age-

even without severe bilateral CF. I wouldn't let that get you

worried. It's the correction I'd be concerned about. How long has she

shown signs of either not being fully corrected or relapsing? Was she ever

fully corrected? Does she pull to stand? How does she stand? You can

take pics holding her in a standing position, front and back for him

IIRC. Might also include a pic of her not standing too. What is the DBB

set at?

The information to contact Dr. Ponseti is on this website

http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html

contact information:

http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/contact.html

Kori

Mama of

Kenton - 6/98

Merek - 3/00

Darbi - 3/28 - Rt. CF - DBB 14hr/d

(¨`·.·´¨)

`·.¸(¨`·.·´¨)

`·.¸.·´

[Guest guest]

Hi, ,

We're glad you came out to post. Welcome, belately, to you and your

daughter.

Kori gave you good suggestions. I agree; I would be concerned about

the fact she doesn't have full correction. (20 months doesn't seem

all that much outside the window for walking, especially given the

circumstances, and that her feet aren't plantigrade... Is she healthy

and doing fine in every other way?)

If I were you, I would seek another opinion, right away, from an

experienced Ponseti method doctor, or even consider going to Iowa.

Even at her age, casting, done right, could be all she needs.

The fact that she went through 14 casts initially is outside of what

is expected in the true Ponseti method.. it should only take 5 to 7;

the feet should've been completely corrected after the tenotomy casts

came off.

What part of the country are you in?

We hope to help..

Best,

and Claire

> Hello my name is and I signed up as a member of this group in

> Summer 2002, but until now I have only been reading what everyone

> else is talking about. I am just wondering if there is anyone out

> there like me who hasn't written yet who might have a similar

> problem to ours. Our daughter has severe bilateral clubfoot. She

> endured 14 serial castings before a tentonomy and a three week

> cast. She went into the DBB 23/7 at six months old and 12/7 at

nine

> months old. She didn't begin to crawl until she was eleven months

> old. Here feet are still not in a perfectly corrected position

with

> her heels slightly pulled up and she is not walking yet. She is

now

> 20 months old and we have a decision to make. Does she not walk

> because of confidence or because she can't? I am just wondering if

> anyone else had casts that long and delayed crawling. I saw the

> poll that was taken and the latest walking entry was 20 months

old.

> She doesn't even try so we don't see that she is unable, but our

> doctor suggests we could try a botox treatment with casting to

relax

> the muscle or Z-cut lenghthening of the achellies tendon. Any one

> with any of these experiences?

> Thank You

[Guest guest]

Hi, ,

We're glad you came out to post. Welcome, belately, to you and your

daughter.

Kori gave you good suggestions. I agree; I would be concerned about

the fact she doesn't have full correction. (20 months doesn't seem

all that much outside the window for walking, especially given the

circumstances, and that her feet aren't plantigrade... Is she healthy

and doing fine in every other way?)

If I were you, I would seek another opinion, right away, from an

experienced Ponseti method doctor, or even consider going to Iowa.

Even at her age, casting, done right, could be all she needs.

The fact that she went through 14 casts initially is outside of what

is expected in the true Ponseti method.. it should only take 5 to 7;

the feet should've been completely corrected after the tenotomy casts

came off.

What part of the country are you in?

We hope to help..

Best,

and Claire

> Hello my name is and I signed up as a member of this group in

> Summer 2002, but until now I have only been reading what everyone

> else is talking about. I am just wondering if there is anyone out

> there like me who hasn't written yet who might have a similar

> problem to ours. Our daughter has severe bilateral clubfoot. She

> endured 14 serial castings before a tentonomy and a three week

> cast. She went into the DBB 23/7 at six months old and 12/7 at

nine

> months old. She didn't begin to crawl until she was eleven months

> old. Here feet are still not in a perfectly corrected position

with

> her heels slightly pulled up and she is not walking yet. She is

now

> 20 months old and we have a decision to make. Does she not walk

> because of confidence or because she can't? I am just wondering if

> anyone else had casts that long and delayed crawling. I saw the

> poll that was taken and the latest walking entry was 20 months

old.

> She doesn't even try so we don't see that she is unable, but our

> doctor suggests we could try a botox treatment with casting to

relax

> the muscle or Z-cut lenghthening of the achellies tendon. Any one

> with any of these experiences?

> Thank You

[Guest guest]

My son Jake (born with Lt clubfoot) was delayed in his physical

milestones. He was in serial casts for 6 wks, then the tenotomy surg

followed by 2 2-week casts. Then the dbb 23/7 for about 3 mos, then at

night for about 9 mos or so. Anyhow he was delayed with his milestones.

By 9 mos old he wasn't rolling over onto his tummy and would only roll

to his back in one direction. He also couldn't go from lying to sitting

on his own. So our ped referred us for PT. Jake progressed fairly

quickly--he finally started crawling just short of 11 mos old. He

started walking at 15-16 mos. He needed a LOT of encouragement to walk

on his own. We actually blew bubbles for him to reach for, to get him

to take a few steps on his own. Once he started, tho, he was off and

running!!

Have you tried PT yet? A physical therapist might have some ideas for

you. As far as treatment options, I can't really help you there. Jake

did fairly well with his treatment but is now relapsing and will need

ATTT surgery (Dr Dietz said he will to a small achilles tenotomy too).

But, Jake's problem is more in the top of his foot rather than the heel.

Good luck and I hope this helps you some.

Kassia

mommy to Jake 3/22/01 Lt clubfoot (will have ATTT surg 4/27/04)

and 11/22/02

[Guest guest]

,

Hi. My son is only 14 months old but we have had basically

the same timeline. He was in casts until he was four months, then

wore the DBB for three months 23/7. His foot relapsed and caused

the need for a repeat tenotomy, after which he wore a cast for four

weeks. He didn't crawl until about 10-11 months old. He reduced

his time in the DBB at 12 months, now in it 12/7. He is crawling

everywhere but has no interest in pulling up or crawling yet. So I

feel he will be heading down the same road as your daughter.

We have never used botox for his feet but has had botox

injections in his eyes for exptropia (lazy eye). He has never had a

problem with the botox, no side effects or anything.

God bless~

and

> Hello my name is and I signed up as a member of this group

in

> Summer 2002, but until now I have only been reading what everyone

> else is talking about. I am just wondering if there is anyone out

> there like me who hasn't written yet who might have a similar

> problem to ours. Our daughter has severe bilateral clubfoot. She

> endured 14 serial castings before a tentonomy and a three week

> cast. She went into the DBB 23/7 at six months old and 12/7 at

nine

> months old. She didn't begin to crawl until she was eleven months

> old. Here feet are still not in a perfectly corrected position

with

> her heels slightly pulled up and she is not walking yet. She is

now

> 20 months old and we have a decision to make. Does she not walk

> because of confidence or because she can't? I am just wondering

if

> anyone else had casts that long and delayed crawling. I saw the

> poll that was taken and the latest walking entry was 20 months

old.

> She doesn't even try so we don't see that she is unable, but our

> doctor suggests we could try a botox treatment with casting to

relax

> the muscle or Z-cut lenghthening of the achellies tendon. Any one

> with any of these experiences?

> Thank You

[Guest guest]

,

Hi. My son is only 14 months old but we have had basically

the same timeline. He was in casts until he was four months, then

wore the DBB for three months 23/7. His foot relapsed and caused

the need for a repeat tenotomy, after which he wore a cast for four

weeks. He didn't crawl until about 10-11 months old. He reduced

his time in the DBB at 12 months, now in it 12/7. He is crawling

everywhere but has no interest in pulling up or crawling yet. So I

feel he will be heading down the same road as your daughter.

We have never used botox for his feet but has had botox

injections in his eyes for exptropia (lazy eye). He has never had a

problem with the botox, no side effects or anything.

God bless~

and

> Hello my name is and I signed up as a member of this group

in

> Summer 2002, but until now I have only been reading what everyone

> else is talking about. I am just wondering if there is anyone out

> there like me who hasn't written yet who might have a similar

> problem to ours. Our daughter has severe bilateral clubfoot. She

> endured 14 serial castings before a tentonomy and a three week

> cast. She went into the DBB 23/7 at six months old and 12/7 at

nine

> months old. She didn't begin to crawl until she was eleven months

> old. Here feet are still not in a perfectly corrected position

with

> her heels slightly pulled up and she is not walking yet. She is

now

> 20 months old and we have a decision to make. Does she not walk

> because of confidence or because she can't? I am just wondering

if

> anyone else had casts that long and delayed crawling. I saw the

> poll that was taken and the latest walking entry was 20 months

old.

> She doesn't even try so we don't see that she is unable, but our

> doctor suggests we could try a botox treatment with casting to

relax

> the muscle or Z-cut lenghthening of the achellies tendon. Any one

> with any of these experiences?

> Thank You