I need support! 2nd son born w/bilateral clubfoot

[Guest guest]

Hello,

My name is and I live in Phx, Az. Our second son Diego was

born w/bilateral clubfoot. We were completely devastated at birth

because we did not know of this condition especially since it was not

detected in the ultrasound. He was cast from day 1 and had the heel

cord release surgery May 26. He just received his shoes with bar on

Friday June 27. Diego has had an extremely difficult time adjusting

to the shoes. I have put them on for a few hours each day and today

was his full 23 hours wearing them. He is now able to lift his feet,

he is a tough cookie. I did notice that he has extreme redness on the

side of his right foot and little pinkie.It looks very red and sore

almost as if it were to turn into a blister. What should I do? I was

planning to remove them for the night until that heals a bit. Any

advice is appreciated.

This has been an extremely difficult time for me and my husband. Our

beautiful son looks to be in such distress when he has those shoes on

especially at night. He does not sleep well at all, he cries. I have

been a wreck and was very happy to have found this website. Please e-

mail me at alf6280@... with your stories.

Also, my Dr. tells me that Diego has to wear his shoes for 23 hours a

day for 2-3 years. Dr. Ponseti recommends 2-3 months and

night/naptime wear. Has anyone else been told this. How do children

learn to crawl and walk with that bar? What are the chances of having

another child with clubfoot?

Thank you in advance for taking the time to read my e-mail,

Kindly yours,

[Guest guest]

Hello,

My name is and I live in Phx, Az. Our second son Diego was

born w/bilateral clubfoot. We were completely devastated at birth

because we did not know of this condition especially since it was not

detected in the ultrasound. He was cast from day 1 and had the heel

cord release surgery May 26. He just received his shoes with bar on

Friday June 27. Diego has had an extremely difficult time adjusting

to the shoes. I have put them on for a few hours each day and today

was his full 23 hours wearing them. He is now able to lift his feet,

he is a tough cookie. I did notice that he has extreme redness on the

side of his right foot and little pinkie.It looks very red and sore

almost as if it were to turn into a blister. What should I do? I was

planning to remove them for the night until that heals a bit. Any

advice is appreciated.

This has been an extremely difficult time for me and my husband. Our

beautiful son looks to be in such distress when he has those shoes on

especially at night. He does not sleep well at all, he cries. I have

been a wreck and was very happy to have found this website. Please e-

mail me at alf6280@... with your stories.

Also, my Dr. tells me that Diego has to wear his shoes for 23 hours a

day for 2-3 years. Dr. Ponseti recommends 2-3 months and

night/naptime wear. Has anyone else been told this. How do children

learn to crawl and walk with that bar? What are the chances of having

another child with clubfoot?

Thank you in advance for taking the time to read my e-mail,

Kindly yours,

[Guest guest]

Hi ,

I know what you mean about the shock when they don't pick it up in

ultrasound, the same thing happened to us. It's tough to get used to for a

while.

I'm so sorry to hear that Diego's having a tough time.

One thing I don't understand - why he only went into the shoes so long after

the tenotomy on May 26th. Usually they are in casts for just 3 weeks and

then go straight into the shoes. Was he in casts until 27th June, or did he

have a gap where he didn't have any casts at all before he got the shoes?

Why I'm asking is that it could be that the feet have started to move in

from the original correction, this can happen very quickly when they are so

little and the tendons are supple. And the feet moving in can make the

shoes very uncomfortable.

It's definitely not necessary to wear them 23 hours for 2-3 years. Dr

Ponseti's standard protocol is 3 months. It's sometimes shortened to 2

months when an older baby is treated because pulling up and weight-bearing

also helps keep the feet corrected.

These things could mean that your doctor isn't following the Ponseti Method

in its entirety. Unfortunately some doctors don't. If you look on my

website you'll find a Ponseti checklist that could help you decide.

www.clubfoot.co.za

Your baby shouldn't be in this pain. I don't know who your doctor is or

where the nearest Ponseti doctor is to you (others will help in this group),

but something doesn't sound right. Whenever people have had really bad

problems with the shoes it's usually a case of the foot not being fully

corrected so it's not yet ready to go into the shoes, early relapse because

of being out of the casts without wearing the shoes, or the shoes being

incorrectly fitted by the orthotist. Whatever it is, the people in this

group will help you get to the bottom of it.

HTH

Moss

STEPS CHARITY

www.steps.org.za

I need support! 2nd son born w/bilateral

clubfoot

Hello,

My name is and I live in Phx, Az. Our second son Diego was

born w/bilateral clubfoot. We were completely devastated at birth

because we did not know of this condition especially since it was not

detected in the ultrasound. He was cast from day 1 and had the heel

cord release surgery May 26. He just received his shoes with bar on

Friday June 27. Diego has had an extremely difficult time adjusting

to the shoes. I have put them on for a few hours each day and today

was his full 23 hours wearing them. He is now able to lift his feet,

he is a tough cookie. I did notice that he has extreme redness on the

side of his right foot and little pinkie.It looks very red and sore

almost as if it were to turn into a blister. What should I do? I was

planning to remove them for the night until that heals a bit. Any

advice is appreciated.

This has been an extremely difficult time for me and my husband. Our

beautiful son looks to be in such distress when he has those shoes on

especially at night. He does not sleep well at all, he cries. I have

been a wreck and was very happy to have found this website. Please e-

mail me at alf6280@... with your stories.

Also, my Dr. tells me that Diego has to wear his shoes for 23 hours a

day for 2-3 years. Dr. Ponseti recommends 2-3 months and

night/naptime wear. Has anyone else been told this. How do children

learn to crawl and walk with that bar? What are the chances of having

another child with clubfoot?

Thank you in advance for taking the time to read my e-mail,

Kindly yours,

[Guest guest]

Hi . Welcome to the group. I'm pregnant with my second baby.

He was just diagnosed as having clubfoot during a routine

ultrasound. I am in Arizona too. I've had the chance to really look

into the Ponseti method and according to Dr. Ponseti, the shoes need

to be worn for 23 hours a day for 3 months and then they usually

decrease the hours to 18, then 16, then 12 until the child is 3 or 4

years old. I am curious which doctor you are seeing for the cf? The

only one I know of in the AZ area that is certified by Dr. Ponseti

is Dr. in Tucson.

> Hello,

>

> My name is and I live in Phx, Az. Our second son Diego was

> born w/bilateral clubfoot. We were completely devastated at birth

> because we did not know of this condition especially since it was

not

> detected in the ultrasound. He was cast from day 1 and had the

heel

> cord release surgery May 26. He just received his shoes with bar

on

> Friday June 27. Diego has had an extremely difficult time

adjusting

> to the shoes. I have put them on for a few hours each day and

today

> was his full 23 hours wearing them. He is now able to lift his

feet,

> he is a tough cookie. I did notice that he has extreme redness on

the

> side of his right foot and little pinkie.It looks very red and

sore

> almost as if it were to turn into a blister. What should I do? I

was

> planning to remove them for the night until that heals a bit. Any

> advice is appreciated.

>

> This has been an extremely difficult time for me and my husband.

Our

> beautiful son looks to be in such distress when he has those shoes

on

> especially at night. He does not sleep well at all, he cries. I

have

> been a wreck and was very happy to have found this website. Please

e-

> mail me at alf6280@a... with your stories.

>

> Also, my Dr. tells me that Diego has to wear his shoes for 23

hours a

> day for 2-3 years. Dr. Ponseti recommends 2-3 months and

> night/naptime wear. Has anyone else been told this. How do

children

> learn to crawl and walk with that bar? What are the chances of

having

> another child with clubfoot?

>

> Thank you in advance for taking the time to read my e-mail,

>

> Kindly yours,

>

[Guest guest]

Hi again. My first son in 4 years old and now I am about 20 weeks

pregnant with a second boy. I have spoken over the phone with Dr.

in Tucson regarding my new baby's cf. He seemed very nice

and returned my call even after hours. We are planning on seeing him

once our son is born. He is on the list of Ponseti certified

doctors, so it's reassuring. I am not familiar with Dr. Vu, but it's

good to know he's here.

Glad to have a fellow Arizonian on here! Let me know how everything

turns out. Best of luck.

> Hi,

>

> Thank you so much for e-mailing me! I am so glad that you are in

Arizona as

> well. We are seeing Dr. Louis P. Vu here in the Phx area. He is

very kind and

> seems to know Ponseti well. I just don't understand why he wants

me to keep

> them on 23 hours a day up until age 3. I need to ask him more

questions when we

> see him July 25. I will let you know. How old is your first child?

Ours is 3

> his name is Isaac and our baby is 3 months old his name is Diego.

Are you in

> the Phx area?

>

> Kindly

>

>

>

>

[Guest guest]

My Janelyse had a hard time with hers too. Screaming and sleeping in 15 minute

cycles, but not being the normal happy baby we are used to. However, after about

3-4 days she started to adjust and it's just gotten better. Now, she's been int

he DBB for about 12 days and she is her normal self again. Even starting to give

us bigger smiles than before the DBB. She has also had redness on the inside of

her clubfoot and acute redness on a couple of spots on her pinkies. I've been

watching for signs of pressure sores, but the redness hasn't gotten worse at

all, still the same and no blisters either. The nurse in our dr.s office said to

put alcohol on the red spots as that would toughen the skin up? I'm not positive

it works, just what we were told. Also, be sure the shoes are fitting correctly.

Kori has a wonderful article on how to make sure of this. If she doesn't forward

to you let me know and I'll find my copy for you!

Marcia

I need support! 2nd son born w/bilateral

clubfoot

Hello,

My name is and I live in Phx, Az. Our second son Diego was

born w/bilateral clubfoot. We were completely devastated at birth

because we did not know of this condition especially since it was not

detected in the ultrasound. He was cast from day 1 and had the heel

cord release surgery May 26. He just received his shoes with bar on

Friday June 27. Diego has had an extremely difficult time adjusting

to the shoes. I have put them on for a few hours each day and today

was his full 23 hours wearing them. He is now able to lift his feet,

he is a tough cookie. I did notice that he has extreme redness on the

side of his right foot and little pinkie.It looks very red and sore

almost as if it were to turn into a blister. What should I do? I was

planning to remove them for the night until that heals a bit. Any

advice is appreciated.

This has been an extremely difficult time for me and my husband. Our

beautiful son looks to be in such distress when he has those shoes on

especially at night. He does not sleep well at all, he cries. I have

been a wreck and was very happy to have found this website. Please e-

mail me at alf6280@... with your stories.

Also, my Dr. tells me that Diego has to wear his shoes for 23 hours a

day for 2-3 years. Dr. Ponseti recommends 2-3 months and

night/naptime wear. Has anyone else been told this. How do children

learn to crawl and walk with that bar? What are the chances of having

another child with clubfoot?

Thank you in advance for taking the time to read my e-mail,

Kindly yours,