Re: New - Introduction*** TO HEATHER

[Guest guest]

Hey ,

Glad to see you here, you are going to get lots and lots of support

and great advise from this board!!! The people here are amazing!!

This is just perfect to show to your husband. Thank-you

!!!!!!!!! Funny, I should have thought about this amazing

research paper put together when researching different methods

when his son was born with cf.

Sorry I didn't have time to talk today, I was on my way to pick up

Gracies new Markells and they closed at 5. I was on my way out the

door after 4 and you know what traffic is like around here! I will

give you a shout tomorrow aft.

ttys

& Grace

> >

> > 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]

Hey ,

Glad to see you here, you are going to get lots and lots of support

and great advise from this board!!! The people here are amazing!!

This is just perfect to show to your husband. Thank-you

!!!!!!!!! Funny, I should have thought about this amazing

research paper put together when researching different methods

when his son was born with cf.

Sorry I didn't have time to talk today, I was on my way to pick up

Gracies new Markells and they closed at 5. I was on my way out the

door after 4 and you know what traffic is like around here! I will

give you a shout tomorrow aft.

ttys

& Grace

> >

> > 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.

> >

>