I am new to the group

[Guest guest]

Hi everyone, I am Anita and my 2 year old son, named Jude , has

bilateral clubfeet. He is from China; my husband and I adopted him

in December 2004. He is from Xinjiang province in NW China near

Mongolia and Russia border. He was diagnosed with an ankle deformity

and at the time didn't realize that he indeed had clubfeet until we

brought him to see a surgeon in Tampa in January and then were

referred to the Shriner's Hospital in Tampa where he is under the

care of Dr. Novick. She is great!! My husband and I are very pleased

with the care that he has received there. He first got serial casted

back on about Feb 10th and then he got lengthing of both achilles

tendons on March 30th, recasted for another 3 weeks, then got the

casts finally taken off on April 22nd and now has the DBB.

The first night he had to wear it , he screamed for an hour and

then I took it off because he was so upset. I knew I was making a

mistake and I cried because I didn't know how I (we) would get

through the next 3 months 24/7, let alone the next 3 years. The

first week of wear we were advised by the prothetist/ orthotic guy

that fitted Jude with the DBB to take it off for a hours in the

morning and the evening to allow Jude to get used to it and to look

for signs of skin breakdown, ie, redness, etc. I hope we did the

right thing , everything seems to be going ok and now we are on to a

23 hour wearing schedule. My son's feet look good and straight and

we are pleased with the outacome so far. I am not looking forward to

the next 2 and 1/2 months.

My son has not even attempted to walk ,but is standing when I

take off the brace, but won't stand with the brace.

I know I shouldn't ask this , but do we have to put the brace

on for 23 hours vs maybe 21 hours? Wouldn't the outcome remain the

same?

I am thankful that this group exists . This is not an easy

thing to go through. Anita in Lutz, FL

[Guest guest]

Anita,

Welcome to you and your family! We're so glad you found us.

It sounds like your son was teated with the Ponseti method. Indeed, I see that

Dr Novick is on Dr Ponseti's list of physicians qualified in the method--that's

usually a good sign.

It's more rare--especially here in the US--to hear of older children being

treated with the Ponseti method ( " older " meaning over the age of 1). However, I

have heard good reports from doctors in India, Africa and South and

CentralAmerica treating children up to 5 years old.

Did your son have any treatment prior to his adoption? Was he walking at all

before beginning the casting?

More questions: How long has he been in the DBB? (you will find that most of us

refer to it as the Foot Abduction Brace, FAB) Does he crawl around in it? Does

he have a gold, fixed-length bar or a red adjustable one? The way the gold is

bent can make it hard to stand in; it's easier if the orthotist leaves a flat

surface in the middle and puts the bends at the ends. These kids really can do

just about anything in the FAB, including walking and standing. You might try

standing him up where he can hold onto something and then distract him with a

favorite toy or song. And learning to pull up in the FAB can be a challenge.

Some babies pull up from a sitting position. My son usually gets on his knees

and then pulls himself up and " walks " the bar closer to whatever he's holding

onto. I bet Jude will figure it out soon.

It's true that most babies who get a late start in the FAB do have a shorter

period at 23/7. It is important for them to spend a substantial part of the day

in the FAB for the first few months though. How much seems to be largely on a

case-by-case basis. If it's possible, I urge you to send pictures of Jude's

feet to Dr Ponseti (ignacio-ponseti @ uiowa .edu, no spaces) and ask his

opinion. He likes to see shots from the front and back while the child is

standing, a shot of the soles of the feet and a shot from the side with the foot

dorsiflexed (toes pointing towards the head) as much as possible.

We wish you all the best. I think you are doing a wonderful and heroic thing

having a 2 year old in the FAB most of the time. Please keep us updated on

Jude's progress: let us know when he figures out how to stand in the FAB, when

he starts walking, anything else you want to brag about. We're a lively and

friendly and compassionate bunch.

Naomi

The Family

Naomi Hannah(02/21/01) Jonah(06/20/03, bilateral clubfoot, FAB 14/7)

chinababy20022004 alkelliher@...> wrote:

Hi everyone, I am Anita and my 2 year old son, named Jude , has

bilateral clubfeet. He is from China; my husband and I adopted him

in December 2004. He is from Xinjiang province in NW China near

Mongolia and Russia border. He was diagnosed with an ankle deformity

and at the time didn't realize that he indeed had clubfeet until we

brought him to see a surgeon in Tampa in January and then were

referred to the Shriner's Hospital in Tampa where he is under the

care of Dr. Novick. She is great!! My husband and I are very pleased

with the care that he has received there. He first got serial casted

back on about Feb 10th and then he got lengthing of both achilles

tendons on March 30th, recasted for another 3 weeks, then got the

casts finally taken off on April 22nd and now has the DBB.

The first night he had to wear it , he screamed for an hour and

then I took it off because he was so upset. I knew I was making a

mistake and I cried because I didn't know how I (we) would get

through the next 3 months 24/7, let alone the next 3 years. The

first week of wear we were advised by the prothetist/ orthotic guy

that fitted Jude with the DBB to take it off for a hours in the

morning and the evening to allow Jude to get used to it and to look

for signs of skin breakdown, ie, redness, etc. I hope we did the

right thing , everything seems to be going ok and now we are on to a

23 hour wearing schedule. My son's feet look good and straight and

we are pleased with the outacome so far. I am not looking forward to

the next 2 and 1/2 months.

My son has not even attempted to walk ,but is standing when I

take off the brace, but won't stand with the brace.

I know I shouldn't ask this , but do we have to put the brace

on for 23 hours vs maybe 21 hours? Wouldn't the outcome remain the

same?

I am thankful that this group exists . This is not an easy

thing to go through. Anita in Lutz, FL

[Guest guest]

Hi Anita

This is a great group which will offer you lots of advice when you need it, even

if it has nothing to do with CF.

I'm not the expert, but I guess if Jude wears the DBB for 21 hours a day here

and there it should not be any different. Our son has a RCF and we sometimes

extended his free time before bath. We made putting on the DBB part of his

routine; off before bath and on again after bath. But we weren't putting them on

a 2 year old. Our eldest son who doesn't have CF is 28 months old and I

sometimes struggle trying to put his nikes on.

I feel for you having to put them on your 2 year old who was previously DBB

free. I would check with your Dr just to be sure. I think a baby's foot is

still forming when it is around 3 months old, I'm not sure if the developing

process of the foot slows down or at what rate it slows down - IYKWIM.

If you don't mind and when you get time I would like to hear about your adoption

experience of how you found each other and what it was like when you brought

Jude home.

Good luck.

Sharon

Charlie 28/12/02

Billy 20/4/04

chinababy20022004 alkelliher@...> wrote:

Hi everyone, I am Anita and my 2 year old son, named Jude , has

bilateral clubfeet. He is from China; my husband and I adopted him

in December 2004. He is from Xinjiang province in NW China near

Mongolia and Russia border. He was diagnosed with an ankle deformity

and at the time didn't realize that he indeed had clubfeet until we

brought him to see a surgeon in Tampa in January and then were

referred to the Shriner's Hospital in Tampa where he is under the

care of Dr. Novick. She is great!! My husband and I are very pleased

with the care that he has received there. He first got serial casted

back on about Feb 10th and then he got lengthing of both achilles

tendons on March 30th, recasted for another 3 weeks, then got the

casts finally taken off on April 22nd and now has the DBB.

The first night he had to wear it , he screamed for an hour and

then I took it off because he was so upset. I knew I was making a

mistake and I cried because I didn't know how I (we) would get

through the next 3 months 24/7, let alone the next 3 years. The

first week of wear we were advised by the prothetist/ orthotic guy

that fitted Jude with the DBB to take it off for a hours in the

morning and the evening to allow Jude to get used to it and to look

for signs of skin breakdown, ie, redness, etc. I hope we did the

right thing , everything seems to be going ok and now we are on to a

23 hour wearing schedule. My son's feet look good and straight and

we are pleased with the outacome so far. I am not looking forward to

the next 2 and 1/2 months.

My son has not even attempted to walk ,but is standing when I

take off the brace, but won't stand with the brace.

I know I shouldn't ask this , but do we have to put the brace

on for 23 hours vs maybe 21 hours? Wouldn't the outcome remain the

same?

I am thankful that this group exists . This is not an easy

thing to go through. Anita in Lutz, FL

[Guest guest]

Naomi, I failed to mention some things in my response. Jude is

wearing the FAB with the gold bar and bend in the middle , which

does make it difficult to stand. I am an Certified Occupational

Therapist Assistant and work at Tampa General Hospital -part time on

weekends. I saw that some children receive OT/PT and that the

Ponseti method discourages PT? I would think it would be

beneficial . I was thinking that Jude would benefit from PT when he

stops wearing the FAB during the day. I was also reading in certain

posts , that some children get relapse; that is scary. I am sure

praying for that not to happen. I will send Dr.P some photos of

Jude's feet and see what he thinks. He sure is a busy man and up in

years. Is he pretty good at responding to e-mail and such?

Anyway.... I see that the success rate for this method is > 90% so I

am hoping things work out to his ( our ) advantage. But Jude is 2

now and I am wondering if his age will work against him; I sure

don't want him to go through more surgery. I have to call Shriner's

and tell them about an incident yesterday where the boot came off

and I think his foot rubbed really hard againgst the back of the

shoe and caused a serious stretch to the Achilles and I hope that

didn't hurt the tendon; he had lengthening surgery on March 30th.

Anyway , thank you for your respnse and suggestion to send photos to

Dr.P. See our family photo in the " photos " section under " kelliher. "

That photo is of us with Jude's social worker, civil affairs officer

(ie, supreme court judge), me, Jude, Bill (husband), and Amber (13

y.o. daughter). -- Anita

> Hi everyone, I am Anita and my 2 year old son, named Jude , has

> bilateral clubfeet. He is from China; my husband and I adopted him

> in December 2004. He is from Xinjiang province in NW China near

> Mongolia and Russia border. He was diagnosed with an ankle

deformity

> and at the time didn't realize that he indeed had clubfeet until

we

> brought him to see a surgeon in Tampa in January and then were

> referred to the Shriner's Hospital in Tampa where he is under the

> care of Dr. Novick. She is great!! My husband and I are very

pleased

> with the care that he has received there. He first got serial

casted

> back on about Feb 10th and then he got lengthing of both achilles

> tendons on March 30th, recasted for another 3 weeks, then got the

> casts finally taken off on April 22nd and now has the DBB.

> The first night he had to wear it , he screamed for an hour

and

> then I took it off because he was so upset. I knew I was making a

> mistake and I cried because I didn't know how I (we) would get

> through the next 3 months 24/7, let alone the next 3 years. The

> first week of wear we were advised by the prothetist/ orthotic guy

> that fitted Jude with the DBB to take it off for a hours in the

> morning and the evening to allow Jude to get used to it and to

look

> for signs of skin breakdown, ie, redness, etc. I hope we did the

> right thing , everything seems to be going ok and now we are on to

a

> 23 hour wearing schedule. My son's feet look good and straight and

> we are pleased with the outacome so far. I am not looking forward

to

> the next 2 and 1/2 months.

> My son has not even attempted to walk ,but is standing when I

> take off the brace, but won't stand with the brace.

> I know I shouldn't ask this , but do we have to put the brace

> on for 23 hours vs maybe 21 hours? Wouldn't the outcome remain the

> same?

> I am thankful that this group exists . This is not an easy

> thing to go through. Anita in Lutz, FL

>

>

>

>

>

>

>

>

>

[Guest guest]

Anita,

You could talk to the othotics people at Shriner's and ask them if they can

leave the middle section of the bar flat. Jonah also has a gold bar which we

(loooong story) had to bend ourselves. My husband put a bend at each end of the

bar instead of in the middle so that Jonah can stand in it easier (he wears it

14 hours a day and sometimes we just do straight through 8pm to 10am so we don't

have to mess with it at nap time, plus he thinks it's really fun right now to

walk around in it).

It's not that the Ponseti method " discourages " PT, but rather that it is usually

unnecessary. Certainly, I don't think it would be harmful if you want to do it.

Especially in cases that are far from the norm--like Jude's--I think it turns

out to be beneficial. It seems we've had several cases recently where older

children were sent to PT to deal with specific issues.

I'd venture to say that relapse is a huge source of worry for most of us. The

tendency of a clubfoot to revert is very strong until age 4 or so, which is why

sticking to the FAB regimen is so important. With a properly corrected foot and

religious FAB-wear and no mitigating factors such as an atypical clubfoot, the

relapse rate is very low. Still, it's something I think about frequently and

I'm forever watching the way my son walks, stands and holds his feet.

I really do urge you to email Dr Ponseti with pictures and a history of your

son's treatment. He works Monday, Wednesday, Friday. He's usually very quick

to get back to people. I do know that he's just returning from a month-long

trip to Europe and that there is a big professional meeting this month--I don't

know how much of a backlog he's got.

This booklet says a little about treatment in older children. I'll also try to

find some of the references others have sent to the list.

http://www.global-help.org/publications/cf-englsh.pdf

Hang in there!

Naomi

The Family

Naomi Hannah(02/21/01) Jonah(06/20/03, bilateral clubfoot, FAB)

chinababy20022004 alkelliher@...> wrote:

Naomi, I failed to mention some things in my response. Jude is

wearing the FAB with the gold bar and bend in the middle , which

does make it difficult to stand. I am an Certified Occupational

Therapist Assistant and work at Tampa General Hospital -part time on

weekends. I saw that some children receive OT/PT and that the

Ponseti method discourages PT? I would think it would be

beneficial . I was thinking that Jude would benefit from PT when he

stops wearing the FAB during the day. I was also reading in certain

posts , that some children get relapse; that is scary. I am sure

praying for that not to happen. I will send Dr.P some photos of

Jude's feet and see what he thinks. He sure is a busy man and up in

years. Is he pretty good at responding to e-mail and such?

Anyway.... I see that the success rate for this method is > 90% so I

am hoping things work out to his ( our ) advantage. But Jude is 2

now and I am wondering if his age will work against him; I sure

don't want him to go through more surgery. I have to call Shriner's

and tell them about an incident yesterday where the boot came off

and I think his foot rubbed really hard againgst the back of the

shoe and caused a serious stretch to the Achilles and I hope that

didn't hurt the tendon; he had lengthening surgery on March 30th.

Anyway , thank you for your respnse and suggestion to send photos to

Dr.P. See our family photo in the " photos " section under " kelliher. "

That photo is of us with Jude's social worker, civil affairs officer

(ie, supreme court judge), me, Jude, Bill (husband), and Amber (13

y.o. daughter). -- Anita

> Hi everyone, I am Anita and my 2 year old son, named Jude , has

> bilateral clubfeet. He is from China; my husband and I adopted him

> in December 2004. He is from Xinjiang province in NW China near

> Mongolia and Russia border. He was diagnosed with an ankle

deformity

> and at the time didn't realize that he indeed had clubfeet until

we

> brought him to see a surgeon in Tampa in January and then were

> referred to the Shriner's Hospital in Tampa where he is under the

> care of Dr. Novick. She is great!! My husband and I are very

pleased

> with the care that he has received there. He first got serial

casted

> back on about Feb 10th and then he got lengthing of both achilles

> tendons on March 30th, recasted for another 3 weeks, then got the

> casts finally taken off on April 22nd and now has the DBB.

> The first night he had to wear it , he screamed for an hour

and

> then I took it off because he was so upset. I knew I was making a

> mistake and I cried because I didn't know how I (we) would get

> through the next 3 months 24/7, let alone the next 3 years. The

> first week of wear we were advised by the prothetist/ orthotic guy

> that fitted Jude with the DBB to take it off for a hours in the

> morning and the evening to allow Jude to get used to it and to

look

> for signs of skin breakdown, ie, redness, etc. I hope we did the

> right thing , everything seems to be going ok and now we are on to

a

> 23 hour wearing schedule. My son's feet look good and straight and

> we are pleased with the outacome so far. I am not looking forward

to

> the next 2 and 1/2 months.

> My son has not even attempted to walk ,but is standing when I

> take off the brace, but won't stand with the brace.

> I know I shouldn't ask this , but do we have to put the brace

> on for 23 hours vs maybe 21 hours? Wouldn't the outcome remain the

> same?

> I am thankful that this group exists . This is not an easy

> thing to go through. Anita in Lutz, FL

>

>

>

>

>

>

>

>

>

[Guest guest]

Naomi, Thank you so much for all your help. I will definately email

photos to Dr.P asap. I was told by Dr. Novick and another surgeon

that Jude has a somewhat mild case of club-foot especially in his

left foot; his right foot has a moderate case. If you look at the

photo of his feet at age 6-7 months --it looked more severe. Then in

China he was walking from about 12 months with hand held assist.

Then as ke progressed in PT he was walking unassisted but falling

often , especially when he tried to hurry while walking or while

attempting to run. Information on his developmental progress in

China is sketchey and I had to get it through an interpreter and her

English was a little choppy. Our adoption agency had only so much

info to provide through the China Center for Adoption Affairs ( the

mediator between the orphanage and our agency). I am wondering if

walking as a young toddler at about 12 months to 21 months and the

PT helped alittle to help straighten out his feet. Anyway, this has

been such an interesting experience for the whole family. When we

got the referral to adopt Jude in October 2004 until now ; it has

been quite a wild ride and I can't wait for things to normalize

(somewhat) come 2 and 1/2 months from now.

I appreciate all the advise and it is nice to be able to bounce

ideas off people like you that truly understand what we are going

through. Thank you again, Anita

> > Hi everyone, I am Anita and my 2 year old son, named Jude , has

> > bilateral clubfeet. He is from China; my husband and I adopted

him

> > in December 2004. He is from Xinjiang province in NW China near

> > Mongolia and Russia border. He was diagnosed with an ankle

> deformity

> > and at the time didn't realize that he indeed had clubfeet until

> we

> > brought him to see a surgeon in Tampa in January and then were

> > referred to the Shriner's Hospital in Tampa where he is under

the

> > care of Dr. Novick. She is great!! My husband and I are very

> pleased

> > with the care that he has received there. He first got serial

> casted

> > back on about Feb 10th and then he got lengthing of both

achilles

> > tendons on March 30th, recasted for another 3 weeks, then got

the

> > casts finally taken off on April 22nd and now has the DBB.

> > The first night he had to wear it , he screamed for an hour

> and

> > then I took it off because he was so upset. I knew I was making

a

> > mistake and I cried because I didn't know how I (we) would get

> > through the next 3 months 24/7, let alone the next 3 years. The

> > first week of wear we were advised by the prothetist/ orthotic

guy

> > that fitted Jude with the DBB to take it off for a hours in the

> > morning and the evening to allow Jude to get used to it and to

> look

> > for signs of skin breakdown, ie, redness, etc. I hope we did the

> > right thing , everything seems to be going ok and now we are on

to

> a

> > 23 hour wearing schedule. My son's feet look good and straight

and

> > we are pleased with the outacome so far. I am not looking

forward

> to

> > the next 2 and 1/2 months.

> > My son has not even attempted to walk ,but is standing when

I

> > take off the brace, but won't stand with the brace.

> > I know I shouldn't ask this , but do we have to put the

brace

> > on for 23 hours vs maybe 21 hours? Wouldn't the outcome remain

the

> > same?

> > I am thankful that this group exists . This is not an easy

> > thing to go through. Anita in Lutz, FL

> >

> >

> >

> >

> >

> >

> >

> >

> >