Re: Dr Ponsetis reply to Dr Frick

January 12, 2005

,

You poor thing! I can TOTALLY empathize with you here... reading the

letters and responses absolutely made my head spin - I am reading

with particular interest because my Ponseti doc is talking about the

posterior capsulectomy as well, and I'm having some concerns. There

is so much info to take in and you don't know who to listen to or

what the best solution is. AAAAAAARRRGH!

We are both completely frustrated and in about the same boat...I

don't know about you, but I'm so overwhelmed at what I should do, who

I should talk to, where I should go - the stress itself is making it

hard to figure out how to handle it.

Good luck!

Darby

Livi dbb 12/7 bi cf

EDD #2 5/12/05

>

> Thx for email – see below. I will also answer your email

>

> L. Frick, MD

>

> Residency Program Director

>

> Dept. of Orthopaedic Surgery

>

> Carolinas Medical Center

>

> 3 yo clubfoot patient

>

> Dear Dr Ponseti, and - hope you are well and enjoying the

> holiday season. I met Grace Boothe yesterday, who is now about 3

and

> a half years old. She has bilat clubfoot, initially treated with

> below knee casts in army system for 5 months, then by in

> Chapel Hill with a few casts and right tenotomy, then by Dr Ponseti

> with casts and bilateral tenotomies. She was in orthotic full time

> but then was cut back because of concerns about ligamentous laxity

> and overcorrection. She had a few followup visits with

> Herzenberg around age 2, and mom says she was worried then about

the

> heels not being down but she said she was given assurance that it

> was ok and would not be a problem.

>

> She has had delayed milestones and is very short for her age- seems

> to be barrel chested to me with disproportionately large head and I

> wonder if she might have mild SED congenita- work up beginning now.

>

> Her feet show bilateral rocker bottom deformity, right worse than

> left, with empty heel pads and abnormal contour of the heel. She

> walks with a stiff knee gait, wide abduction of limbs, and with

> midfoot and forefoot contact but no heel contact with the ground.

> She cannot run or jump.

>

> I have attached copies of xrays of her feet. I would appreciate

(and

> her parents would also) your thoughts/ comments about her feet and

> what to do now. My thoughts are that in some cases where children

> have ligamentous laxity, the midfoot/forefoot ligaments give way

> during casting before the tighter hindfoot ligaments and rocker

> bottom develops. I have observed a few of these children after

> emailing Dr Ponseti, and some have improved after beginning to

walk,

> with the heel dropping down into the heel pad and ankle

dorsiflexion

> improving (rather than only dorsifelxing through the midfoot). In a

> few cases, the rockerbottom did not improve after a few months of

> walking, and I have done limited posterior tibiotalar and

> talocalcaneal arthrotomies with very little to no addition

> lengthening of the Achilles. These few cases seem to be doing ok,

> and maybe have retained some motion at the ankle/ST joint because

of

> their global propensity for laxity.

>

> Should I proceed with posterior arthrotomy in Grace? Right side

only

> or both? Can we work on providing Ponseti method practitioners with

> some guidelines for when (if ever) you believe it is appropriate to

> proceed with surgery? The group (esp Internet parents) are so set

> against any surgery that it is often difficult to even discuss with

> them. In addition, there is a current " rage " of concern

> about `whether or not my child has an atypical clubfoot " . I think

of

> the atypical foot as the ones that are short, broad and have

> plantaris instead of only first ray cavus.

>

> Any thoughts/ideas appreciated. Thanks.

>

> Steve

>

> L. Frick, MD

>

> Residency Program Director

>

> Dept. of Orthopaedic Surgery

>

> Carolinas Medical Center

>

> --------------------------------------------------------------------

-

> -----------

>

> This electronic message may contain information that is

confidential

> and/or legally privileged. It is intended only for the use of the

> individual(s) and entity named as recipients in the message. If you

> are not an intended recipient of this message, please notify the

> sender immediately and delete the material from any computer. Do

not

> deliver, distribute or copy this message, and do not disclose its

> contents or take any action in reliance on the information it

> contains. Thank you.

>

> --------------------------------------------------------------------

-

> -----------

>

> This electronic message may contain information that is

confidential

> and/or legally privileged. It is intended only for the use of the

> individual(s) and entity named as recipients in the message. If you

> are not an intended recipient of this message, please notify the

> sender immediately and delete the material from any computer. Do

not

> deliver, distribute or copy this message, and do not disclose its

> contents or take any action in reliance on the information it

> contains. Thank you.

>

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January 12, 2005

At 09:49 AM 1/12/2005, you wrote:

>Should I proceed with posterior arthrotomy in Grace? Right side only

>or both? Can we work on providing Ponseti method practitioners with

>some guidelines for when (if ever) you believe it is appropriate to

>proceed with surgery? The group (esp Internet parents) are so set

>against any surgery that it is often difficult to even discuss with

>them. In addition, there is a current " rage " of concern

>about `whether or not my child has an atypical clubfoot " . I think of

>the atypical foot as the ones that are short, broad and have

>plantaris instead of only first ray cavus.

>

nice... again. We're just a bunch of crazies here! lol...

Well it seems that Dr. Ponseti told him what he thought and answered this

question pretty well but he's not listening. It sounds to me like Dr.

Frick is giving up and like you said, doesn't believe in atypical CF. So

he's already got a wall up between what Dr. Ponseti does/thinks and what he

thinks is best (which is surgery) I think I'd go see Dr. Ponseti or ask him

to cast again first. You can always do the surgery later right? I would

hope that he'd cast properly though. This is a hard one, but Grace needs a

doc who is interested in at least trying something new if it's being shown

to work and giving his peers due credit for figuring out how to treat these

children he's doing surgery on without surgery.

Grace may not end up being atypical... something else may need to be done

eventually (surgery), we all know this is a possibility. But to give up

when there's a chance to try something else seems a little short sighted to

me. Can Angel Flights get you to Iowa?

kori

]

January 12, 2005

Darby,

Did you consult Dr. Ponseti about this yet? If so, what did he have to say?

Kori

At 10:56 AM 1/12/2005, you wrote:

>,

>

>You poor thing! I can TOTALLY empathize with you here... reading the

>letters and responses absolutely made my head spin - I am reading

>with particular interest because my Ponseti doc is talking about the

>posterior capsulectomy as well, and I'm having some concerns. There

>is so much info to take in and you don't know who to listen to or

>what the best solution is. AAAAAAARRRGH!

>

>We are both completely frustrated and in about the same boat...I

>don't know about you, but I'm so overwhelmed at what I should do, who

>I should talk to, where I should go - the stress itself is making it

>hard to figure out how to handle it.

>

>Good luck!

>Darby

>Livi dbb 12/7 bi cf

>EDD #2 5/12/05

>

> >

> > Thx for email see below. I will also answer your email

> >

> > L. Frick, MD

> >

> > Residency Program Director

> >

> > Dept. of Orthopaedic Surgery

> >

> > Carolinas Medical Center

> >

> > 3 yo clubfoot patient

> >

> > Dear Dr Ponseti, and - hope you are well and enjoying the

> > holiday season. I met Grace Boothe yesterday, who is now about 3

>and

> > a half years old. She has bilat clubfoot, initially treated with

> > below knee casts in army system for 5 months, then by in

> > Chapel Hill with a few casts and right tenotomy, then by Dr Ponseti

> > with casts and bilateral tenotomies. She was in orthotic full time

> > but then was cut back because of concerns about ligamentous laxity

> > and overcorrection. She had a few followup visits with

> > Herzenberg around age 2, and mom says she was worried then about

>the

> > heels not being down but she said she was given assurance that it

> > was ok and would not be a problem.

> >

> > She has had delayed milestones and is very short for her age- seems

> > to be barrel chested to me with disproportionately large head and I

> > wonder if she might have mild SED congenita- work up beginning now.

> >

> > Her feet show bilateral rocker bottom deformity, right worse than

> > left, with empty heel pads and abnormal contour of the heel. She

> > walks with a stiff knee gait, wide abduction of limbs, and with

> > midfoot and forefoot contact but no heel contact with the ground.

> > She cannot run or jump.

> >

> > I have attached copies of xrays of her feet. I would appreciate

>(and

> > her parents would also) your thoughts/ comments about her feet and

> > what to do now. My thoughts are that in some cases where children

> > have ligamentous laxity, the midfoot/forefoot ligaments give way

> > during casting before the tighter hindfoot ligaments and rocker

> > bottom develops. I have observed a few of these children after

> > emailing Dr Ponseti, and some have improved after beginning to

>walk,

> > with the heel dropping down into the heel pad and ankle

>dorsiflexion

> > improving (rather than only dorsifelxing through the midfoot). In a

> > few cases, the rockerbottom did not improve after a few months of

> > walking, and I have done limited posterior tibiotalar and

> > talocalcaneal arthrotomies with very little to no addition

> > lengthening of the Achilles. These few cases seem to be doing ok,

> > and maybe have retained some motion at the ankle/ST joint because

>of

> > their global propensity for laxity.

> >

> > Should I proceed with posterior arthrotomy in Grace? Right side

>only

> > or both? Can we work on providing Ponseti method practitioners with

> > some guidelines for when (if ever) you believe it is appropriate to

> > proceed with surgery? The group (esp Internet parents) are so set

> > against any surgery that it is often difficult to even discuss with

> > them. In addition, there is a current " rage " of concern

> > about `whether or not my child has an atypical clubfoot " . I think

>of

> > the atypical foot as the ones that are short, broad and have

> > plantaris instead of only first ray cavus.

> >

> > Any thoughts/ideas appreciated. Thanks.

> >

> > Steve

> >

> > L. Frick, MD

> >

> > Residency Program Director

> >

> > Dept. of Orthopaedic Surgery

> >

> > Carolinas Medical Center

> >

> > --------------------------------------------------------------------

>-

> > -----------

> >

> > This electronic message may contain information that is

>confidential

> > and/or legally privileged. It is intended only for the use of the

> > individual(s) and entity named as recipients in the message. If you

> > are not an intended recipient of this message, please notify the

> > sender immediately and delete the material from any computer. Do

>not

> > deliver, distribute or copy this message, and do not disclose its

> > contents or take any action in reliance on the information it

> > contains. Thank you.

> >

> > --------------------------------------------------------------------

>-

> > -----------

> >

> > This electronic message may contain information that is

>confidential

> > and/or legally privileged. It is intended only for the use of the

> > individual(s) and entity named as recipients in the message. If you

> > are not an intended recipient of this message, please notify the

> > sender immediately and delete the material from any computer. Do

>not

> > deliver, distribute or copy this message, and do not disclose its

> > contents or take any action in reliance on the information it

> > contains. Thank you.

> >

> > | | | | | Inbox

> >

> > Get the latest updates from MSN

> > MSN Home | My MSN | Hotmail | Search | Shopping

> > | Money | People & Chat

> > Feedback | Help

> > Advertise TRUSTe Approved Privacy Statement Anti-Spam Policy

>

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