Re: Re: Something Interesting

[Guest guest]

Actually, that's something I've never thought of, so there may be something to

that! I think the other problem was the actual underlayer that Children's was

using - it was a cotton batting type that was wound around the leg and

therefore did not allow much airflow. Dr. Pirani uses more a sock-style

underlayer and thinner casts, too.

jubilantones wrote: Just wondering; do you

think the Botox might have been the reason

your children both had skin troubles? Wow, I'm so glad you are

there to give another mother hope!

Caroline

>

> Awhile back, when I first began to post, I mentioned a young mother

> that was going to Children's Hospital at the same time as me, with

a

> little girl the same age as Hayden who was having all the same

issues

> as him; bad skin, large baby, two Botox treatments, screaming at

every

> appointment, thrown into the boots and bar when she wasn't ready,

etc.

> I had given her my phone number at one point because she was

> originally coming from fairly far away for treatment and had to fly

> in, stay several days, fly home and I thought she might like to

hang

> out some time. The last I had heard of her was one of my last

> appointments at Children's and I was told that they had sent her

baby

> to OR to be put under to see if they could get a better casting

while

> she was relaxed. (Apparently that didn't work any better.)

>

> Well, she called me last night and you won't believe what has gone

on!

> Her daughter has endured further Botox injections, more slipping

> casts, continual skin problems and more than enough attitude from

the

> Orthos there.

>

> In addition to that, at the beginning of December Dr. Alvarez

finally

> admitted defeat with the Botox and gave the baby tenotomies under

> general anaesthesia (??) and put pins in them (again, ??). To make

> matters worse, when they did this, they put the casts on too tight

and

> had to start again. This child has been under general at least

three

> times from what I can gather, which in itself is a concern to me.

> They've now told her that her baby won't be able to go into the

boots

> and bar and will instead be fitted for an AFO on Thursday.

>

> She said that she had enquired about me and been told that I was

going

> to Richmond (not right, it's New Westminster, but anyway). She

was in

> the middle of a move and didn't uncover my phone number until

> recently, so she called to find out what I had been doing and let

me

> tell you, I gave her the most glowing report of Dr. Pirani I

could. I

> have invited her to join me at our appointment next Tuesday and she

> has agreed to come. I told her that no matter what, she MUST come

> with me and see how things are done at Royal Columbian.

>

> What has me completely steamed and really scratching my head is

this:

> Once Dr. Alvarez realized she had to do the tenotomies, the child

was

> now out of her research because she is trying to prove the Botox

works

> and it didn't. Why for the love of all, did she not refer the baby

> elsewhere? Or more specifically, Dr. Pirani? Or for God's sake,

at

> least consult with him? Isn't that what doctors do? I know for a

> fact that this little girl also has Complex Clubfoot and Dr.

Alvarez

> does not even seem to know what that is. I am just hoping to get

this

> girl in with me at our appointment and I know that Dr. Pirani will

> take the time to explain things to her and I know that she will

want

> to switch that day!

>

> I'll let you know how it all pans out! I'm seriously tempted to

head

> up to Children's tomorrow and just thumb my nose at everyone

there!

> It actually gives me a little twinge of satisfaction that they had

to

> drop us from their research criteria too because we left! Hmph!

>

[Guest guest]

Way to go!!! I hope all goes well and she changes doctors. Another reason why my

Noah will never see a Botox shot. In my mind it should stay to the women who

wants it done in their face. But just my opinion.

Bri

Cohen wrote:

Actually, that's something I've never thought of, so there may be something

to that! I think the other problem was the actual underlayer that Children's

was using - it was a cotton batting type that was wound around the leg and

therefore did not allow much airflow. Dr. Pirani uses more a sock-style

underlayer and thinner casts, too.

jubilantones wrote: Just wondering; do you

think the Botox might have been the reason

your children both had skin troubles? Wow, I'm so glad you are

there to give another mother hope!

Caroline

>

> Awhile back, when I first began to post, I mentioned a young mother

> that was going to Children's Hospital at the same time as me, with

a

> little girl the same age as Hayden who was having all the same

issues

> as him; bad skin, large baby, two Botox treatments, screaming at

every

> appointment, thrown into the boots and bar when she wasn't ready,

etc.

> I had given her my phone number at one point because she was

> originally coming from fairly far away for treatment and had to fly

> in, stay several days, fly home and I thought she might like to

hang

> out some time. The last I had heard of her was one of my last

> appointments at Children's and I was told that they had sent her

baby

> to OR to be put under to see if they could get a better casting

while

> she was relaxed. (Apparently that didn't work any better.)

>

> Well, she called me last night and you won't believe what has gone

on!

> Her daughter has endured further Botox injections, more slipping

> casts, continual skin problems and more than enough attitude from

the

> Orthos there.

>

> In addition to that, at the beginning of December Dr. Alvarez

finally

> admitted defeat with the Botox and gave the baby tenotomies under

> general anaesthesia (??) and put pins in them (again, ??). To make

> matters worse, when they did this, they put the casts on too tight

and

> had to start again. This child has been under general at least

three

> times from what I can gather, which in itself is a concern to me.

> They've now told her that her baby won't be able to go into the

boots

> and bar and will instead be fitted for an AFO on Thursday.

>

> She said that she had enquired about me and been told that I was

going

> to Richmond (not right, it's New Westminster, but anyway). She

was in

> the middle of a move and didn't uncover my phone number until

> recently, so she called to find out what I had been doing and let

me

> tell you, I gave her the most glowing report of Dr. Pirani I

could. I

> have invited her to join me at our appointment next Tuesday and she

> has agreed to come. I told her that no matter what, she MUST come

> with me and see how things are done at Royal Columbian.

>

> What has me completely steamed and really scratching my head is

this:

> Once Dr. Alvarez realized she had to do the tenotomies, the child

was

> now out of her research because she is trying to prove the Botox

works

> and it didn't. Why for the love of all, did she not refer the baby

> elsewhere? Or more specifically, Dr. Pirani? Or for God's sake,

at

> least consult with him? Isn't that what doctors do? I know for a

> fact that this little girl also has Complex Clubfoot and Dr.

Alvarez

> does not even seem to know what that is. I am just hoping to get

this

> girl in with me at our appointment and I know that Dr. Pirani will

> take the time to explain things to her and I know that she will

want

> to switch that day!

>

> I'll let you know how it all pans out! I'm seriously tempted to

head

> up to Children's tomorrow and just thumb my nose at everyone

there!

> It actually gives me a little twinge of satisfaction that they had

to

> drop us from their research criteria too because we left! Hmph!

>

[Guest guest]

for what it's worth, our dr. used the cotton batting and Janna never had skin

problems from it.....

Marcia

Re: Re: Something Interesting

Actually, that's something I've never thought of, so there may be something

to that! I think the other problem was the actual underlayer that Children's

was using - it was a cotton batting type that was wound around the leg and

therefore did not allow much airflow. Dr. Pirani uses more a sock-style

underlayer and thinner casts, too.

jubilantones wrote: Just wondering; do

you think the Botox might have been the reason

your children both had skin troubles? Wow, I'm so glad you are

there to give another mother hope!

Caroline

>

> Awhile back, when I first began to post, I mentioned a young mother

> that was going to Children's Hospital at the same time as me, with

a

> little girl the same age as Hayden who was having all the same

issues

> as him; bad skin, large baby, two Botox treatments, screaming at

every

> appointment, thrown into the boots and bar when she wasn't ready,

etc.

> I had given her my phone number at one point because she was

> originally coming from fairly far away for treatment and had to fly

> in, stay several days, fly home and I thought she might like to

hang

> out some time. The last I had heard of her was one of my last

> appointments at Children's and I was told that they had sent her

baby

> to OR to be put under to see if they could get a better casting

while

> she was relaxed. (Apparently that didn't work any better.)

>

> Well, she called me last night and you won't believe what has gone

on!

> Her daughter has endured further Botox injections, more slipping

> casts, continual skin problems and more than enough attitude from

the

> Orthos there.

>

> In addition to that, at the beginning of December Dr. Alvarez

finally

> admitted defeat with the Botox and gave the baby tenotomies under

> general anaesthesia (??) and put pins in them (again, ??). To make

> matters worse, when they did this, they put the casts on too tight

and

> had to start again. This child has been under general at least

three

> times from what I can gather, which in itself is a concern to me.

> They've now told her that her baby won't be able to go into the

boots

> and bar and will instead be fitted for an AFO on Thursday.

>

> She said that she had enquired about me and been told that I was

going

> to Richmond (not right, it's New Westminster, but anyway). She

was in

> the middle of a move and didn't uncover my phone number until

> recently, so she called to find out what I had been doing and let

me

> tell you, I gave her the most glowing report of Dr. Pirani I

could. I

> have invited her to join me at our appointment next Tuesday and she

> has agreed to come. I told her that no matter what, she MUST come

> with me and see how things are done at Royal Columbian.

>

> What has me completely steamed and really scratching my head is

this:

> Once Dr. Alvarez realized she had to do the tenotomies, the child

was

> now out of her research because she is trying to prove the Botox

works

> and it didn't. Why for the love of all, did she not refer the baby

> elsewhere? Or more specifically, Dr. Pirani? Or for God's sake,

at

> least consult with him? Isn't that what doctors do? I know for a

> fact that this little girl also has Complex Clubfoot and Dr.

Alvarez

> does not even seem to know what that is. I am just hoping to get

this

> girl in with me at our appointment and I know that Dr. Pirani will

> take the time to explain things to her and I know that she will

want

> to switch that day!

>

> I'll let you know how it all pans out! I'm seriously tempted to

head

> up to Children's tomorrow and just thumb my nose at everyone

there!

> It actually gives me a little twinge of satisfaction that they had

to

> drop us from their research criteria too because we left! Hmph!

>