Re: letter between Dr H. and Dr Frickbeverly

[Guest guest]

> > The

> >ilizarov treatment might appeal to the internet parent who is

open

> >surgery phobic....Ilizarov is a " Super cast " ..

>

> That has rods poked into the child's foot and leg... ugh!

>

> I don't understand this statement at all. I know it can work

but

> jeez... like one is *that* much better than the other. I would

want to

> know why and how and how long the Ilizarov device (it's not a

cast, it's a

> huge metal thing with metal rings around the leg and foot with

rods poking

> into the leg and foot and you adjust it to correct the CF, or

something

> like that - their are pictures online, search *Ilizarov*) would

be used as

> opposed to the capsulectomy (sp? is it an *ectomy?) which he

says would be

> a 3-4w cast. What are they going to do in the ankle capsule and

why? What

> does the Ilizarov device do instead and how is that better?

>

> I'm also kinda weirded out about the reference to the *internet

parent who

> is open surgery phobic*. What does that say for us and how are

we

> different than any other parent who doesn't want surgery? More

informed

> about it I'm sure but why the distinction of an internet parent?

>

> hummm...

>

> Kori

>

>

>

>

[Guest guest]

I agree the choice of words was offensive and presumptuous. Your doctor may

not have written that letter personally however. He may have given a general

over view to a secretary-type-person who took it upon themselves to be a jerk.

Maybe you should bring that to his attention so he knows either he's as @$$ or

his typist is.

s.

Re: letter between Dr H. and Dr Frickbeverly

> > The

> >ilizarov treatment might appeal to the internet parent who is

open

> >surgery phobic....Ilizarov is a " Super cast " ..

>

> That has rods poked into the child's foot and leg... ugh!

>

> I don't understand this statement at all. I know it can work

but

> jeez... like one is *that* much better than the other. I would

want to

> know why and how and how long the Ilizarov device (it's not a

cast, it's a

> huge metal thing with metal rings around the leg and foot with

rods poking

> into the leg and foot and you adjust it to correct the CF, or

something

> like that - their are pictures online, search *Ilizarov*) would

be used as

> opposed to the capsulectomy (sp? is it an *ectomy?) which he

says would be

> a 3-4w cast. What are they going to do in the ankle capsule and

why? What

> does the Ilizarov device do instead and how is that better?

>

> I'm also kinda weirded out about the reference to the *internet

parent who

> is open surgery phobic*. What does that say for us and how are

we

> different than any other parent who doesn't want surgery? More

informed

> about it I'm sure but why the distinction of an internet parent?

>

> hummm...

>

> Kori

>

>

>

>

[Guest guest]

Wow.

No offense was intended.

Re: letter between Dr H. and Dr Frickbeverly

> > The

> >ilizarov treatment might appeal to the internet parent who is

open

> >surgery phobic....Ilizarov is a " Super cast " ..

>

> That has rods poked into the child's foot and leg... ugh!

>

> I don't understand this statement at all. I know it can work

but

> jeez... like one is *that* much better than the other. I would

want to

> know why and how and how long the Ilizarov device (it's not a

cast, it's a

> huge metal thing with metal rings around the leg and foot with

rods poking

> into the leg and foot and you adjust it to correct the CF, or

something

> like that - their are pictures online, search *Ilizarov*) would

be used as

> opposed to the capsulectomy (sp? is it an *ectomy?) which he

says would be

> a 3-4w cast. What are they going to do in the ankle capsule and

why? What

> does the Ilizarov device do instead and how is that better?

>

> I'm also kinda weirded out about the reference to the *internet

parent who

> is open surgery phobic*. What does that say for us and how are

we

> different than any other parent who doesn't want surgery? More

informed

> about it I'm sure but why the distinction of an internet parent?

>

> hummm...

>

> Kori

>

>

>

>

[Guest guest]

Wow again.

I meant no offense.

Re: letter between Dr H. and Dr Frickbeverly

> > The

> >ilizarov treatment might appeal to the internet parent who is

open

> >surgery phobic....Ilizarov is a " Super cast " ..

>

> That has rods poked into the child's foot and leg... ugh!

>

> I don't understand this statement at all. I know it can work

but

> jeez... like one is *that* much better than the other. I would

want to

> know why and how and how long the Ilizarov device (it's not a

cast, it's a

> huge metal thing with metal rings around the leg and foot with

rods poking

> into the leg and foot and you adjust it to correct the CF, or

something

> like that - their are pictures online, search *Ilizarov*) would

be used as

> opposed to the capsulectomy (sp? is it an *ectomy?) which he

says would be

> a 3-4w cast. What are they going to do in the ankle capsule and

why? What

> does the Ilizarov device do instead and how is that better?

>

> I'm also kinda weirded out about the reference to the *internet

parent who

> is open surgery phobic*. What does that say for us and how are

we

> different than any other parent who doesn't want surgery? More

informed

> about it I'm sure but why the distinction of an internet parent?

>

> hummm...

>

> Kori

>

>

>

>

[Guest guest]

Oh . I will definitely be praying for wisdom and peace for

you. It is so hard when you don't know what to do and nothing is

making sense. Take some time, deep breaths, glass of wine, and listen

to what your heart is telling you. Seems to me, you've made up your

mind about Dr. Frick. I too would not want him to cast my child

simply to pacify me. Keep doing your research and keep pestering

them. something I have learned through this with my son is I have got

to be aggressive, in their face and persistent, even when they don't

particularily care for it. But if I don't go after them for my child

who will. And believe me, I am sooooo not a confrontational person.

I've kinda amazed a few of the people who know me well.

As far as Dr. Ponseti is concerned, this is what I would do. Pin dr.

p down and tell him, look, we did what you said, we waited and

something is definitely wrong...what are you going to do about it.

How are we going to fix this.

You are doing a great job in thinking things through. Just keep going.

Hang in there and go get them tiger! Lord bless you and give you

wisdom and peace these next few days! Trust in the One who created her.

jason atypical bl cf 10-09-03

> > > The

> > >ilizarov treatment might appeal to the internet parent who is

> open

> > >surgery phobic....Ilizarov is a " Super cast " ..

> >

> > That has rods poked into the child's foot and leg... ugh!

> >

> > I don't understand this statement at all. I know it can work

> but

> > jeez... like one is *that* much better than the other. I would

> want to

> > know why and how and how long the Ilizarov device (it's not a

> cast, it's a

> > huge metal thing with metal rings around the leg and foot with

> rods poking

> > into the leg and foot and you adjust it to correct the CF, or

> something

> > like that - their are pictures online, search *Ilizarov*) would

> be used as

> > opposed to the capsulectomy (sp? is it an *ectomy?) which he

> says would be

> > a 3-4w cast. What are they going to do in the ankle capsule and

> why? What

> > does the Ilizarov device do instead and how is that better?

> >

> > I'm also kinda weirded out about the reference to the *internet

> parent who

> > is open surgery phobic*. What does that say for us and how are

> we

> > different than any other parent who doesn't want surgery? More

> informed

> > about it I'm sure but why the distinction of an internet parent?

> >

> > hummm...

> >

> > Kori

> >

> >

> >

> >

[Guest guest]

I can understand where your coming from. I also had CF corrected with

surgery and living with that makes you even more infatic about your

child NOT having surgery. I was offended by the comment of being

an " internet parent " if it wasn't for the internet I don't think he

would have as many CF patients as he does. Underlying I feel as

though he was saying " phobic parent " (put on the kid gloves and whip

out the pacifer and try this.) When all your asking for is just a

straight opinion. I have more to say about that comment but the words

are better kept to myself! I think you should go and see Dr. Ponseti

again tell him how you've waited and time is not something on Grace's

side now because of her age and you want to come to a decision that

will make you know your doing whats best for her. I also have to say

in the return email from Dr. Frick I believe, I didn't like the

little inserted answers to your questions. Tacky

JMO

KK

Livi 01/22/03

Ava 05/27/04 Bilat Atypical CF s 21/7

> > > The

> > >ilizarov treatment might appeal to the internet parent who is

> open

> > >surgery phobic....Ilizarov is a " Super cast " ..

> >

> > That has rods poked into the child's foot and leg... ugh!

> >

> > I don't understand this statement at all. I know it can work

> but

> > jeez... like one is *that* much better than the other. I

would

> want to

> > know why and how and how long the Ilizarov device (it's not a

> cast, it's a

> > huge metal thing with metal rings around the leg and foot with

> rods poking

> > into the leg and foot and you adjust it to correct the CF, or

> something

> > like that - their are pictures online, search *Ilizarov*) would

> be used as

> > opposed to the capsulectomy (sp? is it an *ectomy?) which he

> says would be

> > a 3-4w cast. What are they going to do in the ankle capsule

and

> why? What

> > does the Ilizarov device do instead and how is that better?

> >

> > I'm also kinda weirded out about the reference to the *internet

> parent who

> > is open surgery phobic*. What does that say for us and how

are

> we

> > different than any other parent who doesn't want surgery? More

> informed

> > about it I'm sure but why the distinction of an internet parent?

> >

> > hummm...

> >

> > Kori

> >

> >

> >

> >