Re: graces appt. w/dr frick

[Guest guest]

Thanks for the further explanation. That does make sense, I didn't realize

Dr. P hadn't said to come right on up. I think you know in your heart what

is best for Grace, and if she can't handle the Ilizarov device and casts

aren't going to help, then you know best. I hope you are able to come to a

decision about all this soon, so your heart will be at peace with

it. Whatever you decide, we're here to support you. It's not like you

haven't tried your best to make sure she gets the best care possible.

Hang in there and let us know what you decide.

hugs,

Kori

At 01:56 PM 2/9/2005, you wrote:

>I think the main problem with Grace is not that she has

>rockerbottom. Her rockerbottom has progressed over the year or more

>I was told it would get better. Now her tendons are tight and

>honestly I dont think a cast is going to stretch that all back out.

>One of her bones in her foot doesn't even look normal for some

>reason. I think it is the cuboid.....it should look like a peanut

>and hers is just round. Another bone; the one on the sole of her

>foot is pointing down and should be slightly pointing up. This is

>what causes the lumps on the soles of her feet (rockerbottom) I dont

>think Dr Ponseti really understands the complexity of Graces

>issues....its not just a rockerbottom. Its a number of issues that

>have gotten worse over time and have probably gone for too long to

>be fixed by just a cast. Dr Herzenberg said he doesnt even feel

>comfortable doing a tenotomy on Grace because of her age and it

>would the 3rd one........so honestly how much stretching of all

>those tendons is a cast going to do without causing more damage to

>her midfoot. I was told a cast cannot grab the bones and move them

>down. You need something internal to grab them and reposition

>them. Its really hard to explain. Also the patient Dr Ponseti

>mentioned to me that had rockerbottom and Dr Frick operated on. The

>child relapsed after surgery and needed more surgery.....well

>apparently the boy had other very serious issues to begin with. One

>leg and foot were much smaller than the other...like inches

>smaller. He wore a normal size shoe on one foot and an infant shoe

>on the other. I guess my point is that boy had very abnormal

>clubfoot along with other issues that caused his relapse. So that

>doesn't worry me anymore. The impression I get is that both Dr Frick

>and Dr Herzenberg feel some intervention is needed other than just

>casting. Now I just need to decide which. I have been in contact

>with a parent on this board whose son may be treated soon with the

>Ilizarov method. I just know how Grace is and honestly do not see

>her being able to cope with that type of treatment. It takes a long

>time and it is very scarey looking.

>So this is getting long winded. I guess I am not going to Iowa

>because Dr Ponseti just recommended that Dr Frick see Grace again.

>I think if Dr Ponseti knew for sure casting would work he would have

>said to come on to see him. I feel in my heart that one or two

>casts will not fix the underlying problems. So thats that. I am

>feeling better with all of this now that I know I have done all I

>could do. Thanks again for all of your support.

>

>

>

>

>

>

>

[Guest guest]

,

Whatever you decide, know that you have done the absolute best by

your daughter! Even if you have to opt for surgery, it will be much

much less invasive than if you had not gone throught the method!

Also, you know that you have made sure that you have the best doctors

in the whole country working to find the best solution for Grace. We

are giving you a huge hug right now! You know you will make the best

desicion for her!!!

& Grace

>

>

> >I think the main problem with Grace is not that she has

> >rockerbottom. Her rockerbottom has progressed over the year or

more

> >I was told it would get better. Now her tendons are tight and

> >honestly I dont think a cast is going to stretch that all back out.

> >One of her bones in her foot doesn't even look normal for some

> >reason. I think it is the cuboid.....it should look like a peanut

> >and hers is just round. Another bone; the one on the sole of her

> >foot is pointing down and should be slightly pointing up. This is

> >what causes the lumps on the soles of her feet (rockerbottom) I

dont

> >think Dr Ponseti really understands the complexity of Graces

> >issues....its not just a rockerbottom. Its a number of issues that

> >have gotten worse over time and have probably gone for too long to

> >be fixed by just a cast. Dr Herzenberg said he doesnt even feel

> >comfortable doing a tenotomy on Grace because of her age and it

> >would the 3rd one........so honestly how much stretching of all

> >those tendons is a cast going to do without causing more damage to

> >her midfoot. I was told a cast cannot grab the bones and move them

> >down. You need something internal to grab them and reposition

> >them. Its really hard to explain. Also the patient Dr Ponseti

> >mentioned to me that had rockerbottom and Dr Frick operated on.

The

> >child relapsed after surgery and needed more surgery.....well

> >apparently the boy had other very serious issues to begin with.

One

> >leg and foot were much smaller than the other...like inches

> >smaller. He wore a normal size shoe on one foot and an infant shoe

> >on the other. I guess my point is that boy had very abnormal

> >clubfoot along with other issues that caused his relapse. So that

> >doesn't worry me anymore. The impression I get is that both Dr

Frick

> >and Dr Herzenberg feel some intervention is needed other than just

> >casting. Now I just need to decide which. I have been in contact

> >with a parent on this board whose son may be treated soon with the

> >Ilizarov method. I just know how Grace is and honestly do not see

> >her being able to cope with that type of treatment. It takes a

long

> >time and it is very scarey looking.

> >So this is getting long winded. I guess I am not going to Iowa

> >because Dr Ponseti just recommended that Dr Frick see Grace again.

> >I think if Dr Ponseti knew for sure casting would work he would

have

> >said to come on to see him. I feel in my heart that one or two

> >casts will not fix the underlying problems. So thats that. I am

> >feeling better with all of this now that I know I have done all I

> >could do. Thanks again for all of your support.

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

You know what Jen, in the broad scheme of things, your best is all

you can do - and you've done it! Ultimately, we all do our very best

for our children. Obviously, you've done your research and you know

Grace (and her feet) better than anyone. Go with your gut and lean

on us whenever you need to!

Hugs,

Daiga

>

> I think the main problem with Grace is not that she has

> rockerbottom. Her rockerbottom has progressed over the year or

more

> I was told it would get better. Now her tendons are tight and

> honestly I dont think a cast is going to stretch that all back

out.

> One of her bones in her foot doesn't even look normal for some

> reason. I think it is the cuboid.....it should look like a peanut

> and hers is just round. Another bone; the one on the sole of her

> foot is pointing down and should be slightly pointing up. This is

> what causes the lumps on the soles of her feet (rockerbottom) I

dont

> think Dr Ponseti really understands the complexity of Graces

> issues....its not just a rockerbottom. Its a number of issues that

> have gotten worse over time and have probably gone for too long to

> be fixed by just a cast. Dr Herzenberg said he doesnt even feel

> comfortable doing a tenotomy on Grace because of her age and it

> would the 3rd one........so honestly how much stretching of all

> those tendons is a cast going to do without causing more damage to

> her midfoot. I was told a cast cannot grab the bones and move them

> down. You need something internal to grab them and reposition

> them. Its really hard to explain. Also the patient Dr Ponseti

> mentioned to me that had rockerbottom and Dr Frick operated on.

The

> child relapsed after surgery and needed more surgery.....well

> apparently the boy had other very serious issues to begin with.

One

> leg and foot were much smaller than the other...like inches

> smaller. He wore a normal size shoe on one foot and an infant shoe

> on the other. I guess my point is that boy had very abnormal

> clubfoot along with other issues that caused his relapse. So that

> doesn't worry me anymore. The impression I get is that both Dr

Frick

> and Dr Herzenberg feel some intervention is needed other than just

> casting. Now I just need to decide which. I have been in contact

> with a parent on this board whose son may be treated soon with the

> Ilizarov method. I just know how Grace is and honestly do not see

> her being able to cope with that type of treatment. It takes a

long

> time and it is very scarey looking.

> So this is getting long winded. I guess I am not going to Iowa

> because Dr Ponseti just recommended that Dr Frick see Grace again.

> I think if Dr Ponseti knew for sure casting would work he would

have

> said to come on to see him. I feel in my heart that one or two

> casts will not fix the underlying problems. So thats that. I am

> feeling better with all of this now that I know I have done all I

> could do. Thanks again for all of your support.