Re: Hayden's Tenotomy

[Guest guest]

You are so right. Those first steps are a blessing. ( at least they were for me

) I read that your son went through Botox. My son's doctor said that he wanted

to go through with that. I have never heard of it being done on a child with cf.

I have seen it done to kids on tv before and the fact that they put them to

sleep for this scares me. Can you please tell me more about the procedure? Thank

you.

Bri

wrote:

Hello there - well, it's done! And it ended up being both feet, which

was not what I had hoped for, but better to be cautious and Dr. Pirani

felt that the right tendon was still too tight. I have to say this -

it was awful to go through, worse for Hayden I am sure, but it was

FAST! Even faster than the Botox injections he had, which is

incredible. Most of Hayden's issue was about being held perfectly

still - he about cried himself silly over it and was hysterical by the

time it was all said and done. Once it was over, he nursed and fell

asleep - but awoke shortly after and cried some more. Before I left

the hospital, I gave him some Tylenol and he slept the whole way home

(yep - had to schlep on transit and foot - I need a car). His mood

improved considerably once we were home and his big sister sang him

The Crocodile Song. He ate a big bowl of food along with some fruit

and I just gave him more Tylenol and some Advil as well to combat any

discomfort he may experience. Unfortunately the poor guy has been

having a lot of troubles with gas and we have had many rough nights

lately. So we'll see how it goes.

When the left cast was removed today, I was very happy to see his left

foot move easily over to the side without helping it too much. This

is the first time I have seen this foot responsive at all and to see

both feet fully dorsiflexed after the tenotomy, well...I am just so

dang happy that we are nearly there!

Stupidly, all of us there forgot to take the impressions of his feet

with which to order the shoes, so he will probably have to have a

holding cast on for a bit. Sigh. I am SOOOOOO done with the casting

part of this - it has been five out of his six months of life so far

and I just want the guy's skin to breathe some air for a change!

Rem and talked a bit about maybe trying him in some worn-in

Markells she has until he can get his s, so we will explore that.

But I am feeling that finally after six long months, we are getting

somewhere and you know the reward will be when I see him take his

first steps. Right?

[Guest guest]

Hang in there . It sounds like the worse is over. The casts

are a pain in the neck - for me anyway because I am paranoid about

knowing what is going on with my little guy's skin underneath. I'm

happy for you that the tenotomy is over and done with.

>

> Hello there - well, it's done! And it ended up being both feet,

which

> was not what I had hoped for, but better to be cautious and Dr.

Pirani

> felt that the right tendon was still too tight. I have to say

this -

> it was awful to go through, worse for Hayden I am sure, but it was

> FAST! Even faster than the Botox injections he had, which is

> incredible. Most of Hayden's issue was about being held perfectly

> still - he about cried himself silly over it and was hysterical by

the

> time it was all said and done. Once it was over, he nursed and

fell

> asleep - but awoke shortly after and cried some more. Before I

left

> the hospital, I gave him some Tylenol and he slept the whole way

home

> (yep - had to schlep on transit and foot - I need a car). His mood

> improved considerably once we were home and his big sister sang him

> The Crocodile Song. He ate a big bowl of food along with some

fruit

> and I just gave him more Tylenol and some Advil as well to combat

any

> discomfort he may experience. Unfortunately the poor guy has been

> having a lot of troubles with gas and we have had many rough nights

> lately. So we'll see how it goes.

>

> When the left cast was removed today, I was very happy to see his

left

> foot move easily over to the side without helping it too much.

This

> is the first time I have seen this foot responsive at all and to

see

> both feet fully dorsiflexed after the tenotomy, well...I am just so

> dang happy that we are nearly there!

>

> Stupidly, all of us there forgot to take the impressions of his

feet

> with which to order the shoes, so he will probably have to have a

> holding cast on for a bit. Sigh. I am SOOOOOO done with the

casting

> part of this - it has been five out of his six months of life so

far

> and I just want the guy's skin to breathe some air for a change!

> Rem and talked a bit about maybe trying him in some worn-

in

> Markells she has until he can get his s, so we will

explore that.

>

> But I am feeling that finally after six long months, we are getting

> somewhere and you know the reward will be when I see him take his

> first steps. Right?

>

[Guest guest]

Hi Bri - thanks for asking. When Hayden was given the Botox injections (and he

had it in each tendon on two separate occasions), he was only given a topical

freezing gel to numb his skin - he was not put under for it. The procedure

consisted of about four of us holding him down on his tummy over a pillow and

the doctor inserting the needle and injecting it bit by bit, moving the needle

a little more each time, more or less in a clock rotation. It was horrible,

because he was screaming so hard and fighting with all of his strength (which

then makes everyone hold him tighter) and the site where the needle went was

bleeding due to being opened from the rotating. I was assured that the Botox

did not hurt, but I am not fully convinced about that since it IS a needle

going into a tendon and DID cause bruising. By the way, both hits of Botox did

absolutely NOTHING to help Hayden's feet.

Just so you know, Dr. Pirani explained to me that Botox is intended for

muscles or tendons that are in spasm and there is no data indicating that the

tendon in a clubfoot baby is in spasm. If anything it is atrophied and needs

to be rebuilt.

Bronson wrote: You are so

right. Those first steps are a blessing. ( at least they were for me ) I read

that your son went through Botox. My son's doctor said that he wanted to go

through with that. I have never heard of it being done on a child with cf. I

have seen it done to kids on tv before and the fact that they put them to sleep

for this scares me. Can you please tell me more about the procedure? Thank you.

Bri

wrote:

Hello there - well, it's done! And it ended up being both feet, which

was not what I had hoped for, but better to be cautious and Dr. Pirani

felt that the right tendon was still too tight. I have to say this -

it was awful to go through, worse for Hayden I am sure, but it was

FAST! Even faster than the Botox injections he had, which is

incredible. Most of Hayden's issue was about being held perfectly

still - he about cried himself silly over it and was hysterical by the

time it was all said and done. Once it was over, he nursed and fell

asleep - but awoke shortly after and cried some more. Before I left

the hospital, I gave him some Tylenol and he slept the whole way home

(yep - had to schlep on transit and foot - I need a car). His mood

improved considerably once we were home and his big sister sang him

The Crocodile Song. He ate a big bowl of food along with some fruit

and I just gave him more Tylenol and some Advil as well to combat any

discomfort he may experience. Unfortunately the poor guy has been

having a lot of troubles with gas and we have had many rough nights

lately. So we'll see how it goes.

When the left cast was removed today, I was very happy to see his left

foot move easily over to the side without helping it too much. This

is the first time I have seen this foot responsive at all and to see

both feet fully dorsiflexed after the tenotomy, well...I am just so

dang happy that we are nearly there!

Stupidly, all of us there forgot to take the impressions of his feet

with which to order the shoes, so he will probably have to have a

holding cast on for a bit. Sigh. I am SOOOOOO done with the casting

part of this - it has been five out of his six months of life so far

and I just want the guy's skin to breathe some air for a change!

Rem and talked a bit about maybe trying him in some worn-in

Markells she has until he can get his s, so we will explore that.

But I am feeling that finally after six long months, we are getting

somewhere and you know the reward will be when I see him take his

first steps. Right?

[Guest guest]

I want to thank you for responding to me. I feel for your little one and don't

know how you went through it. I on the other hand would have been pulled out of

there by the law,( after I got a few shot's in) and told to wait. ( you should

never witness your child being circumcised ) after that I am very protective

over him. But back to the shots. I thought it was strange that I couldn't find

anything on line that had botox and clubfoot on the same page. I am going to

save this letter and talk further with this doctor about it and let him know

that we will not be going through the shots. He has been through enough already.

I thank you and you have helped me with my decision. I am also getting a new

doctor.

Bri

Cohen wrote:

Hi Bri - thanks for asking. When Hayden was given the Botox injections (and

he had it in each tendon on two separate occasions), he was only given a

topical freezing gel to numb his skin - he was not put under for it. The

procedure consisted of about four of us holding him down on his tummy over a

pillow and the doctor inserting the needle and injecting it bit by bit, moving

the needle a little more each time, more or less in a clock rotation. It was

horrible, because he was screaming so hard and fighting with all of his

strength (which then makes everyone hold him tighter) and the site where the

needle went was bleeding due to being opened from the rotating. I was assured

that the Botox did not hurt, but I am not fully convinced about that since it

IS a needle going into a tendon and DID cause bruising. By the way, both hits

of Botox did absolutely NOTHING to help Hayden's feet.

Just so you know, Dr. Pirani explained to me that Botox is intended for

muscles or tendons that are in spasm and there is no data indicating that the

tendon in a clubfoot baby is in spasm. If anything it is atrophied and needs

to be rebuilt.

Bronson wrote: You are so

right. Those first steps are a blessing. ( at least they were for me ) I read

that your son went through Botox. My son's doctor said that he wanted to go

through with that. I have never heard of it being done on a child with cf. I

have seen it done to kids on tv before and the fact that they put them to sleep

for this scares me. Can you please tell me more about the procedure? Thank you.

Bri

wrote:

Hello there - well, it's done! And it ended up being both feet, which

was not what I had hoped for, but better to be cautious and Dr. Pirani

felt that the right tendon was still too tight. I have to say this -

it was awful to go through, worse for Hayden I am sure, but it was

FAST! Even faster than the Botox injections he had, which is

incredible. Most of Hayden's issue was about being held perfectly

still - he about cried himself silly over it and was hysterical by the

time it was all said and done. Once it was over, he nursed and fell

asleep - but awoke shortly after and cried some more. Before I left

the hospital, I gave him some Tylenol and he slept the whole way home

(yep - had to schlep on transit and foot - I need a car). His mood

improved considerably once we were home and his big sister sang him

The Crocodile Song. He ate a big bowl of food along with some fruit

and I just gave him more Tylenol and some Advil as well to combat any

discomfort he may experience. Unfortunately the poor guy has been

having a lot of troubles with gas and we have had many rough nights

lately. So we'll see how it goes.

When the left cast was removed today, I was very happy to see his left

foot move easily over to the side without helping it too much. This

is the first time I have seen this foot responsive at all and to see

both feet fully dorsiflexed after the tenotomy, well...I am just so

dang happy that we are nearly there!

Stupidly, all of us there forgot to take the impressions of his feet

with which to order the shoes, so he will probably have to have a

holding cast on for a bit. Sigh. I am SOOOOOO done with the casting

part of this - it has been five out of his six months of life so far

and I just want the guy's skin to breathe some air for a change!

Rem and talked a bit about maybe trying him in some worn-in

Markells she has until he can get his s, so we will explore that.

But I am feeling that finally after six long months, we are getting

somewhere and you know the reward will be when I see him take his

first steps. Right?

[Guest guest]

Reading what said about Dr Pirani's opinion on botox treatment for

clubfoot made so much sense to me. Thank goodness the use of it is not

widespread.

My friend had botox injected in her face (for lines) she said it was

extremely painful...don't you love the way doctors say it's not hurting them

when you know your baby is in distress and pain. Our first (eight)

non-Ponseti casts were like that. I hated every minute of them. He wrenched

's right (stiffer) foot so hard the one time that he cried whenever

anyone touched it for weeks afterwards. Thank goodness for Dr Ponseti and

his gentle method.

We're off on our summer beach holiday on Sunday (we live in South Africa),

The very best wishes to everyone for the holidays! May you and your

families have a peaceful and happy time!

and

24 Jan 2003, bilateral clubfoot

www.clubfoot.co.za

Moss

Steps Charity

www.steps.org.za

Cell:

Re: Hayden's Tenotomy

I want to thank you for responding to me. I feel for your little one and

don't know how you went through it. I on the other hand would have been

pulled out of there by the law,( after I got a few shot's in) and told to

wait. ( you should never witness your child being circumcised ) after that I

am very protective over him. But back to the shots. I thought it was strange

that I couldn't find anything on line that had botox and clubfoot on the

same page. I am going to save this letter and talk further with this doctor

about it and let him know that we will not be going through the shots. He

has been through enough already. I thank you and you have helped me with my

decision. I am also getting a new doctor.

Bri

Cohen wrote:

Hi Bri - thanks for asking. When Hayden was given the Botox injections

(and he had it in each tendon on two separate occasions), he was only given

a topical freezing gel to numb his skin - he was not put under for it. The

procedure consisted of about four of us holding him down on his tummy over

a pillow and the doctor inserting the needle and injecting it bit by bit,

moving the needle a little more each time, more or less in a clock

rotation. It was horrible, because he was screaming so hard and fighting

with all of his strength (which then makes everyone hold him tighter) and

the site where the needle went was bleeding due to being opened from the

rotating. I was assured that the Botox did not hurt, but I am not fully

convinced about that since it IS a needle going into a tendon and DID cause

bruising. By the way, both hits of Botox did absolutely NOTHING to help

Hayden's feet.

Just so you know, Dr. Pirani explained to me that Botox is intended for

muscles or tendons that are in spasm and there is no data indicating that

the tendon in a clubfoot baby is in spasm. If anything it is atrophied and

needs to be rebuilt.

[Guest guest]

I'm so glad that you have made a decision - I am so angry that after I allowed

that to happen, the injections didn't have any effect on him. Plus I forgot to

mention that Dr. Alvarez's study is only five years old, so there is no data

showing what happens in the longterm. She had told us her relapse rate was

low, but what happens when the kid is twelve and has another growth spurt? I

saw more than one two year old (or older) in there getting recasted.

Hmmmm.....let's see - is that because the Botox DOESN'T WORK? I suspect that

the babies it is " successful " on are ones that would not have needed a tenotomy

- catch my drift?

Here is a link to some information about the Botox (although it's limited):

http://www.cw.bc.ca/orthopaedics/botoxres.asp

I'll see if I can locate an actual study.

PS I was there for Hayden's circ, and I hear ya! But we were done by a

specialist in Vancouver here, Dr. Pollock. It was extremely quick!

http://www.pollockclinics.com/circumcision/circumcision-index.html

Bronson wrote: I want to thank

you for responding to me. I feel for your little one and don't know how you

went through it. I on the other hand would have been pulled out of there by the

law,( after I got a few shot's in) and told to wait. ( you should never witness

your child being circumcised ) after that I am very protective over him. But

back to the shots. I thought it was strange that I couldn't find anything on

line that had botox and clubfoot on the same page. I am going to save this

letter and talk further with this doctor about it and let him know that we will

not be going through the shots. He has been through enough already. I thank you

and you have helped me with my decision. I am also getting a new doctor.

Bri

Cohen wrote:

Hi Bri - thanks for asking. When Hayden was given the Botox injections

(and he had it in each tendon on two separate occasions), he was only given a

topical freezing gel to numb his skin - he was not put under for it. The

procedure consisted of about four of us holding him down on his tummy over a

pillow and the doctor inserting the needle and injecting it bit by bit, moving

the needle a little more each time, more or less in a clock rotation. It was

horrible, because he was screaming so hard and fighting with all of his

strength (which then makes everyone hold him tighter) and the site where the

needle went was bleeding due to being opened from the rotating. I was assured

that the Botox did not hurt, but I am not fully convinced about that since it

IS a needle going into a tendon and DID cause bruising. By the way, both hits

of Botox did absolutely NOTHING to help Hayden's feet.

Just so you know, Dr. Pirani explained to me that Botox is intended for

muscles or tendons that are in spasm and there is no data indicating that the

tendon in a clubfoot baby is in spasm. If anything it is atrophied and needs

to be rebuilt.

Bronson wrote: You are so

right. Those first steps are a blessing. ( at least they were for me ) I read

that your son went through Botox. My son's doctor said that he wanted to go

through with that. I have never heard of it being done on a child with cf. I

have seen it done to kids on tv before and the fact that they put them to

sleep for this scares me. Can you please tell me more about the procedure?

Thank you.

Bri

wrote:

Hello there - well, it's done! And it ended up being both feet, which

was not what I had hoped for, but better to be cautious and Dr. Pirani

felt that the right tendon was still too tight. I have to say this -

it was awful to go through, worse for Hayden I am sure, but it was

FAST! Even faster than the Botox injections he had, which is

incredible. Most of Hayden's issue was about being held perfectly

still - he about cried himself silly over it and was hysterical by the

time it was all said and done. Once it was over, he nursed and fell

asleep - but awoke shortly after and cried some more. Before I left

the hospital, I gave him some Tylenol and he slept the whole way home

(yep - had to schlep on transit and foot - I need a car). His mood

improved considerably once we were home and his big sister sang him

The Crocodile Song. He ate a big bowl of food along with some fruit

and I just gave him more Tylenol and some Advil as well to combat any

discomfort he may experience. Unfortunately the poor guy has been

having a lot of troubles with gas and we have had many rough nights

lately. So we'll see how it goes.

When the left cast was removed today, I was very happy to see his left

foot move easily over to the side without helping it too much. This

is the first time I have seen this foot responsive at all and to see

both feet fully dorsiflexed after the tenotomy, well...I am just so

dang happy that we are nearly there!

Stupidly, all of us there forgot to take the impressions of his feet

with which to order the shoes, so he will probably have to have a

holding cast on for a bit. Sigh. I am SOOOOOO done with the casting

part of this - it has been five out of his six months of life so far

and I just want the guy's skin to breathe some air for a change!

Rem and talked a bit about maybe trying him in some worn-in

Markells she has until he can get his s, so we will explore that.

But I am feeling that finally after six long months, we are getting

somewhere and you know the reward will be when I see him take his

first steps. Right?

[Guest guest]

My 8 yo nephew had botox a couple years ago for his MS, shots given in his legs

and it DID hurt like 60 screaming Indians every time they did it.

s.

Re: Hayden's Tenotomy

I want to thank you for responding to me. I feel for your little one and don't

know how you went through it. I on the other hand would have been pulled out of

there by the law,( after I got a few shot's in) and told to wait. ( you should

never witness your child being circumcised ) after that I am very protective

over him. But back to the shots. I thought it was strange that I couldn't find

anything on line that had botox and clubfoot on the same page. I am going to

save this letter and talk further with this doctor about it and let him know

that we will not be going through the shots. He has been through enough already.

I thank you and you have helped me with my decision. I am also getting a new

doctor.

Bri

Cohen wrote:

Hi Bri - thanks for asking. When Hayden was given the Botox injections

(and he had it in each tendon on two separate occasions), he was only given a

topical freezing gel to numb his skin - he was not put under for it. The

procedure consisted of about four of us holding him down on his tummy over a

pillow and the doctor inserting the needle and injecting it bit by bit, moving

the needle a little more each time, more or less in a clock rotation. It was

horrible, because he was screaming so hard and fighting with all of his

strength (which then makes everyone hold him tighter) and the site where the

needle went was bleeding due to being opened from the rotating. I was assured

that the Botox did not hurt, but I am not fully convinced about that since it

IS a needle going into a tendon and DID cause bruising. By the way, both hits

of Botox did absolutely NOTHING to help Hayden's feet.

Just so you know, Dr. Pirani explained to me that Botox is intended for

muscles or tendons that are in spasm and there is no data indicating that the

tendon in a clubfoot baby is in spasm. If anything it is atrophied and needs

to be rebuilt.

Bronson wrote: You are so

right. Those first steps are a blessing. ( at least they were for me ) I read

that your son went through Botox. My son's doctor said that he wanted to go

through with that. I have never heard of it being done on a child with cf. I

have seen it done to kids on tv before and the fact that they put them to sleep

for this scares me. Can you please tell me more about the procedure? Thank you.

Bri

wrote:

Hello there - well, it's done! And it ended up being both feet, which

was not what I had hoped for, but better to be cautious and Dr. Pirani

felt that the right tendon was still too tight. I have to say this -

it was awful to go through, worse for Hayden I am sure, but it was

FAST! Even faster than the Botox injections he had, which is

incredible. Most of Hayden's issue was about being held perfectly

still - he about cried himself silly over it and was hysterical by the

time it was all said and done. Once it was over, he nursed and fell

asleep - but awoke shortly after and cried some more. Before I left

the hospital, I gave him some Tylenol and he slept the whole way home

(yep - had to schlep on transit and foot - I need a car). His mood

improved considerably once we were home and his big sister sang him

The Crocodile Song. He ate a big bowl of food along with some fruit

and I just gave him more Tylenol and some Advil as well to combat any

discomfort he may experience. Unfortunately the poor guy has been

having a lot of troubles with gas and we have had many rough nights

lately. So we'll see how it goes.

When the left cast was removed today, I was very happy to see his left

foot move easily over to the side without helping it too much. This

is the first time I have seen this foot responsive at all and to see

both feet fully dorsiflexed after the tenotomy, well...I am just so

dang happy that we are nearly there!

Stupidly, all of us there forgot to take the impressions of his feet

with which to order the shoes, so he will probably have to have a

holding cast on for a bit. Sigh. I am SOOOOOO done with the casting

part of this - it has been five out of his six months of life so far

and I just want the guy's skin to breathe some air for a change!

Rem and talked a bit about maybe trying him in some worn-in

Markells she has until he can get his s, so we will explore that.

But I am feeling that finally after six long months, we are getting

somewhere and you know the reward will be when I see him take his

first steps. Right?