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Hi- I am new to the group. I wondered if anyone had experience

getting an HMO to pay for needed expert care out of state.

In brief, our story is that our son, Theo, was born in August of

2004. We found out he had a severe right clubfoot

in the delivery room, which now seems strange, given that I myself am

a physician at an academic medical center and I had 4 ultrasounds

while pregnant and it was never discovered. Theo also had apneas at

birth and was in the ICU for 2 weeks. The apneas resolved and we

were " left " with the clubfoot. Even though the pediatrician in the

delivery room had pronounced the news of the clubfoot to us in the

most somber tones, I looked at it as correctable and felt positive

about the treatment.

Unfortunately, my optimism and the early course with more concern

about the apneas led us to assume Theo would get good care at our

center. When the MD told us he had " trained with Ponseti " we took

this at face value. After 6-7 casts and a posterior tenotomy, the MD

put Theo in a non-standard AFO " because he has so much equinus " . My

gut (as in your message!) told me something was very wrong, but we

kept going. Long story short, of course Theo's foot relapsed and the

MD now told us we should see a neurologist because Theo couldn't

dorsiflex and " doesn't have the garden variety clubfoot " (whatever

garden variety clubfoot is).

Right then, I told myself that we were never going back to that

doctor. I contacted Dr Ponseti himself who told me that no MDs in

Michigan were qualified, that many say they " trained " with him but to

get qualified is another matter. He highly recommended Dr Herzenberg

in Baltimore who has been wonderful. Dr Herzenberg told us by

looking at the AFO that Theo had been given as well as the casts we

had saved that the treatment Theo had received had significantly

deviated from Ponseti's protocol. He estimated that the MD had only

gotten Theo to 30 degrees of lateral correction as opposed to the 70

degree standard. He noted that Theo couldn't dorsiflex due to the

fact that the ankle bones were as yet uncorrected. As it stands now,

we fly back and forth to Baltimore each week but after 4 casts, Theo

is at nearly 70 degrees of lateral correction. He will need another

tenotomy but we feel we are in excellent hands with Dr Herzenberg.

We currently have appealed our insurance companies' rejection of

treatment in Baltimore (they said " care could be provided at

Michigan " ) by furnishing them with 17 pages of the history above with

references, pictures (Theo's AFO vs. Denis-Browne brace) and articles

by Ponseti and Herzenberg). Just wondered anyone else had success

with appealing to an HMO and thoughts on the best approach.

thanks! Helen

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Guest guest

Hi- I am new to the group. I wondered if anyone had experience

getting an HMO to pay for needed expert care out of state.

In brief, our story is that our son, Theo, was born in August of

2004. We found out he had a severe right clubfoot

in the delivery room, which now seems strange, given that I myself am

a physician at an academic medical center and I had 4 ultrasounds

while pregnant and it was never discovered. Theo also had apneas at

birth and was in the ICU for 2 weeks. The apneas resolved and we

were " left " with the clubfoot. Even though the pediatrician in the

delivery room had pronounced the news of the clubfoot to us in the

most somber tones, I looked at it as correctable and felt positive

about the treatment.

Unfortunately, my optimism and the early course with more concern

about the apneas led us to assume Theo would get good care at our

center. When the MD told us he had " trained with Ponseti " we took

this at face value. After 6-7 casts and a posterior tenotomy, the MD

put Theo in a non-standard AFO " because he has so much equinus " . My

gut (as in your message!) told me something was very wrong, but we

kept going. Long story short, of course Theo's foot relapsed and the

MD now told us we should see a neurologist because Theo couldn't

dorsiflex and " doesn't have the garden variety clubfoot " (whatever

garden variety clubfoot is).

Right then, I told myself that we were never going back to that

doctor. I contacted Dr Ponseti himself who told me that no MDs in

Michigan were qualified, that many say they " trained " with him but to

get qualified is another matter. He highly recommended Dr Herzenberg

in Baltimore who has been wonderful. Dr Herzenberg told us by

looking at the AFO that Theo had been given as well as the casts we

had saved that the treatment Theo had received had significantly

deviated from Ponseti's protocol. He estimated that the MD had only

gotten Theo to 30 degrees of lateral correction as opposed to the 70

degree standard. He noted that Theo couldn't dorsiflex due to the

fact that the ankle bones were as yet uncorrected. As it stands now,

we fly back and forth to Baltimore each week but after 4 casts, Theo

is at nearly 70 degrees of lateral correction. He will need another

tenotomy but we feel we are in excellent hands with Dr Herzenberg.

We currently have appealed our insurance companies' rejection of

treatment in Baltimore (they said " care could be provided at

Michigan " ) by furnishing them with 17 pages of the history above with

references, pictures (Theo's AFO vs. Denis-Browne brace) and articles

by Ponseti and Herzenberg). Just wondered anyone else had success

with appealing to an HMO and thoughts on the best approach.

thanks! Helen

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