New - Introduction - HEATHER

[Guest guest]

my heart is breaking for you. My name is ee and I have two sons,

both have bilateral club foot (both feet on both kids). What you are

describing is NOT NOT NOT NOT NOT NOT NOT NOT NOT normal and NOT NOT NOT NOT NOT

necessary! It's torture! It's horrible! It's totally wrong!!!! Please honey

listen to me and if necessary knock your husband up side the head till he sees

the light!

PLEASE go see a Ponseti doctor. Your daughter should not be suffering this

terrible experience. Her skin should not be rotting, she should not be

screaming herself purple, all this is SO wrong!!! This is the stuff Ponseti

eleminates, don't you understand? Club foot treatment is not painful or

harmful, it's gentle. Botox is not necessary and it's a very painful thing to

have done.

My oldest son went through nearly two years of WRONG/ BAD treatment and now at

age 7 still has issues that will last him all his life. My other son was

treated by Dr. Ponseti in 5 short weeks and has perfect feet.

Two years of bad treatment leaving bad feet.

Five weeks of right treatment leaving perfect feet.

Think about that. It's right here in my house. Two living children to

testify.

It is not too late for your child to recieve the right treatment - the one that

DOESN " T hurt or rot her skin; the one that will give him normal feet to dance on

at his wedding. To ride bikes, skate board, play ball......Please, get a 2nd

opinion.

Please open the links associated with this group, arm yourself with the

information, and then with these FACTS please approach your husband with this

information. Tell him it cannot hurt to try (but it does hurt to do what you

are doing!) Tell him that as half this child's parent you insist on finding an

alternative because this is so wrong.

Tell him if Ponseti's Method cannot fix your daughter you can revert back to

this (quack) and his botox crap but you have to act quickly. You can't just

cast and un-cast and use shoes then not use shoes in this chaotic manner and

expect your kid to have normal feet after wards. IT doesnt work that way!!!!!!

The bones have to be put back in to alignment according to a certain sequence,

not just shoved in to shape. Done right it's gentle and painless and only lasts

a few short weeks. I had a purple screamer too for nearly 2 years, listen

please, I've been in your shoes and now my 7 year old has these crappy feet.

We have been accused here at this group of being a group of fanatics. WEll,

guilty as charged I suppose but I am a Ponseti Fanatic because I have four feet

in my house that both prove and dis-prove the whole situation. Ponseti's method

works - fast, easy, painless, no rotten skin. There is a logical manner to the

casting moving smoothly in to a logical manner of bracing and it's a cake walk

compared to what you describe BUT IT WORKS.

Treatments dont' have to be cruel to work - please tell this to your husband -

it doesn't have to hurt to work.

The information is here, on this group, in it's files, scientific and medical

proof, not just parent-opinions. Real proof, real studies, real photos, not

just our say-so. Educate yourself - the fact that you even wrote means you

understand something is terribly wrong with your child's treatment and you need

to find the right path. This is the right path. My sons would both tell you

this is the right path - the one with stiff ugly feet would tell you to run for

Ponseti and the one with pretty normal feet would tell you to run to Ponseti...

OH I feel sick reading what you describe, please - stop what you are doing

Sweetie it doesn't have to be this way! Speak up for your son, he cannot speak

for himself.

God bless you so much right now,

shawnee

New - Introduction

Hi there, I was referred to this group by another (clubfootcanada) in

order to obtain some more information about the Pnseti method of

treating clubfoot.

Hello All, my name is and my son was born on June 19th , 2005

with bilateral clubfoot (idiopathic). We were not aware of the

condition ahead of his birth, so it was a surprise when he came out!

I was not freaked out, or worried as I knew right away what it was and

that it was treatable, although I didn't know how. We consulted with

Children's Hospital when he was two days old and were told his were

" moderate to severe " , which according to our Orthopedic Surgeon was

unusual for idiopathic. We were also told his treatment would be as

follows:

8 weeks of casts (once a week)

Botox injection in each Achilles tendon

Boots and bar (24/7 until he's able to stand and then night time until

he is 4, partnered with special Nu Balance running shoes)

We left with his first set of casts on. He is now almost four months

old, has had 12 casts and two Botox injections in each calf and

just last week was put in the boots and bar.

From the beginning he has had a very difficult time with the health of

his skin under the casts. His skin has been raw and weeping with very

dry and large patches of eczema. He's gained the reputation of being

the " purple screamer " at the hospital because he gets so worked up

when they are treating him. He looks at me with pain in his eyes,

tears streaming down his face with an expression that says " do something! "

Six weeks ago, we had a week long break from the casts to heal his

skin, and even though this was going to set us back, we welcomed it. I

realized what I had missed by casting him at two days old. We had

baths together, I kissed his feet obsessively and we played with his toes.

Four weeks ago, we had a trial run with the boots and bar because the

doctor was concerned about his skin as it was bad right away again. I

struggled for two days with them and he kicked them off about a

jillion times, until I took him back to the hospital and had him

re-casted. The following appointment he had " two week " casts put on

and when I took them off last week I was appalled. I had noticed that

they were getting smelly, but the backs of both knees and the tops of

both feet were raw, weeping, scaly and looked like they had been

burned. I could not believe the smell - it smelled like death. I was

reassured by the doctor that it was okay and we are trying the boots

again. As relieved as I was to make the switch, initially I was not

finding them any less painful in terms of him screaming his head off

when I put them on. One of his heels still isn't really dropped down

enough for the boot and I find that even though I seem to get them on

okay, his feet slip below the marks they made on them for me. It has

been frustrating to say the least. He was very upset the next

morning, crying a lot and that is unusual behaviour for him as he is

generally sunny most of the time. There has been improvement in that

area, but he still kicks them off, his feet slip inside of them and he

has devised a way to kick that loosens the nut on one of the boots!

Yesterday I went for a follow up and watched as the doctor reefed his

bad (left) foot up to get the number reading she wanted. He was

screaming and I was trying to keep it together. In addition to that,

when I mentioned that I co-sleep with him the doctor started lecturing

me about sleeping in the same bed with him because of the hardware

maybe not allowing him to move under blankets, blah blah blah. I

found myself having to justify my lifestyle to her and I was very

irked. I didn't bother to tell her that when he does sleep in his

crib, he tummy sleeps as I probably would have been criticized for

that too! I feel very often that she talks down to me and on the rare

occasions that my husband accompanies me to the appointments, she will

talk directly to him and over me. This is perhaps because he has a

degree and I don't.

It has been recommended to me by others in the Clubfoot Canada group

that I go and see the local doctor that practices the Ponseti Method.

My biggest obstacle will be my husband in this endeavour because he

feels the Botox is cutting edge and is happy with the way things are

going (of course he is, he's not there holding down his son while he

screams every week!) I approached him last night about this issue and

he agreed that I could look into it, but what he wants to see is

documentation on this method - and seriously, the more " medical

journal " it is, the better as he understands numbers and statistics

better than testimonials. I presented to him that since I am the one

who is largely dealing with this issue why would it matter which

doctor I took Hayden to if it meant a more gentle treatment for him?

I haven't fully convinced him, but I am determined to stand my ground

on this.

Please, if anyone can help me, either by directing me to medical

articles, websites or your own stories on this group, I would really

appreciate it! I am feeling very lost and alone, relatively

unsupported (emotionally) by my husband and am just looking for some

" been there " testimonials. Please feel free to email me privately if

you like, because misery sure loves company.

[Guest guest]

my heart is breaking for you. My name is ee and I have two sons,

both have bilateral club foot (both feet on both kids). What you are

describing is NOT NOT NOT NOT NOT NOT NOT NOT NOT normal and NOT NOT NOT NOT NOT

necessary! It's torture! It's horrible! It's totally wrong!!!! Please honey

listen to me and if necessary knock your husband up side the head till he sees

the light!

PLEASE go see a Ponseti doctor. Your daughter should not be suffering this

terrible experience. Her skin should not be rotting, she should not be

screaming herself purple, all this is SO wrong!!! This is the stuff Ponseti

eleminates, don't you understand? Club foot treatment is not painful or

harmful, it's gentle. Botox is not necessary and it's a very painful thing to

have done.

My oldest son went through nearly two years of WRONG/ BAD treatment and now at

age 7 still has issues that will last him all his life. My other son was

treated by Dr. Ponseti in 5 short weeks and has perfect feet.

Two years of bad treatment leaving bad feet.

Five weeks of right treatment leaving perfect feet.

Think about that. It's right here in my house. Two living children to

testify.

It is not too late for your child to recieve the right treatment - the one that

DOESN " T hurt or rot her skin; the one that will give him normal feet to dance on

at his wedding. To ride bikes, skate board, play ball......Please, get a 2nd

opinion.

Please open the links associated with this group, arm yourself with the

information, and then with these FACTS please approach your husband with this

information. Tell him it cannot hurt to try (but it does hurt to do what you

are doing!) Tell him that as half this child's parent you insist on finding an

alternative because this is so wrong.

Tell him if Ponseti's Method cannot fix your daughter you can revert back to

this (quack) and his botox crap but you have to act quickly. You can't just

cast and un-cast and use shoes then not use shoes in this chaotic manner and

expect your kid to have normal feet after wards. IT doesnt work that way!!!!!!

The bones have to be put back in to alignment according to a certain sequence,

not just shoved in to shape. Done right it's gentle and painless and only lasts

a few short weeks. I had a purple screamer too for nearly 2 years, listen

please, I've been in your shoes and now my 7 year old has these crappy feet.

We have been accused here at this group of being a group of fanatics. WEll,

guilty as charged I suppose but I am a Ponseti Fanatic because I have four feet

in my house that both prove and dis-prove the whole situation. Ponseti's method

works - fast, easy, painless, no rotten skin. There is a logical manner to the

casting moving smoothly in to a logical manner of bracing and it's a cake walk

compared to what you describe BUT IT WORKS.

Treatments dont' have to be cruel to work - please tell this to your husband -

it doesn't have to hurt to work.

The information is here, on this group, in it's files, scientific and medical

proof, not just parent-opinions. Real proof, real studies, real photos, not

just our say-so. Educate yourself - the fact that you even wrote means you

understand something is terribly wrong with your child's treatment and you need

to find the right path. This is the right path. My sons would both tell you

this is the right path - the one with stiff ugly feet would tell you to run for

Ponseti and the one with pretty normal feet would tell you to run to Ponseti...

OH I feel sick reading what you describe, please - stop what you are doing

Sweetie it doesn't have to be this way! Speak up for your son, he cannot speak

for himself.

God bless you so much right now,

shawnee

New - Introduction

Hi there, I was referred to this group by another (clubfootcanada) in

order to obtain some more information about the Pnseti method of

treating clubfoot.

Hello All, my name is and my son was born on June 19th , 2005

with bilateral clubfoot (idiopathic). We were not aware of the

condition ahead of his birth, so it was a surprise when he came out!

I was not freaked out, or worried as I knew right away what it was and

that it was treatable, although I didn't know how. We consulted with

Children's Hospital when he was two days old and were told his were

" moderate to severe " , which according to our Orthopedic Surgeon was

unusual for idiopathic. We were also told his treatment would be as

follows:

8 weeks of casts (once a week)

Botox injection in each Achilles tendon

Boots and bar (24/7 until he's able to stand and then night time until

he is 4, partnered with special Nu Balance running shoes)

We left with his first set of casts on. He is now almost four months

old, has had 12 casts and two Botox injections in each calf and

just last week was put in the boots and bar.

From the beginning he has had a very difficult time with the health of

his skin under the casts. His skin has been raw and weeping with very

dry and large patches of eczema. He's gained the reputation of being

the " purple screamer " at the hospital because he gets so worked up

when they are treating him. He looks at me with pain in his eyes,

tears streaming down his face with an expression that says " do something! "

Six weeks ago, we had a week long break from the casts to heal his

skin, and even though this was going to set us back, we welcomed it. I

realized what I had missed by casting him at two days old. We had

baths together, I kissed his feet obsessively and we played with his toes.

Four weeks ago, we had a trial run with the boots and bar because the

doctor was concerned about his skin as it was bad right away again. I

struggled for two days with them and he kicked them off about a

jillion times, until I took him back to the hospital and had him

re-casted. The following appointment he had " two week " casts put on

and when I took them off last week I was appalled. I had noticed that

they were getting smelly, but the backs of both knees and the tops of

both feet were raw, weeping, scaly and looked like they had been

burned. I could not believe the smell - it smelled like death. I was

reassured by the doctor that it was okay and we are trying the boots

again. As relieved as I was to make the switch, initially I was not

finding them any less painful in terms of him screaming his head off

when I put them on. One of his heels still isn't really dropped down

enough for the boot and I find that even though I seem to get them on

okay, his feet slip below the marks they made on them for me. It has

been frustrating to say the least. He was very upset the next

morning, crying a lot and that is unusual behaviour for him as he is

generally sunny most of the time. There has been improvement in that

area, but he still kicks them off, his feet slip inside of them and he

has devised a way to kick that loosens the nut on one of the boots!

Yesterday I went for a follow up and watched as the doctor reefed his

bad (left) foot up to get the number reading she wanted. He was

screaming and I was trying to keep it together. In addition to that,

when I mentioned that I co-sleep with him the doctor started lecturing

me about sleeping in the same bed with him because of the hardware

maybe not allowing him to move under blankets, blah blah blah. I

found myself having to justify my lifestyle to her and I was very

irked. I didn't bother to tell her that when he does sleep in his

crib, he tummy sleeps as I probably would have been criticized for

that too! I feel very often that she talks down to me and on the rare

occasions that my husband accompanies me to the appointments, she will

talk directly to him and over me. This is perhaps because he has a

degree and I don't.

It has been recommended to me by others in the Clubfoot Canada group

that I go and see the local doctor that practices the Ponseti Method.

My biggest obstacle will be my husband in this endeavour because he

feels the Botox is cutting edge and is happy with the way things are

going (of course he is, he's not there holding down his son while he

screams every week!) I approached him last night about this issue and

he agreed that I could look into it, but what he wants to see is

documentation on this method - and seriously, the more " medical

journal " it is, the better as he understands numbers and statistics

better than testimonials. I presented to him that since I am the one

who is largely dealing with this issue why would it matter which

doctor I took Hayden to if it meant a more gentle treatment for him?

I haven't fully convinced him, but I am determined to stand my ground

on this.

Please, if anyone can help me, either by directing me to medical

articles, websites or your own stories on this group, I would really

appreciate it! I am feeling very lost and alone, relatively

unsupported (emotionally) by my husband and am just looking for some

" been there " testimonials. Please feel free to email me privately if

you like, because misery sure loves company.