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Welcome, Helen and Theo!

I don't have any personal experience with the insurance fight, but I

know that a number of parents have appealed to their insurance group

for coverage (not sure about HMO's specifically) and won, and some

parents are still in the fight as well.

Hopefully they'll chime in for you. You can search the archives

regarding this too, though it can be tedious to go through the

archives now since there are so many messages.

There is now a certified Ponseti doctor in Michigan. Dr. near

Grand Rapids. I would recommend that you consider going to him for

Theo's follow up appointments once correction is achieved to save

yourself some long distance traveling.

I am very curious as to why you chose to fly to Baltimore for

treatments versus going to Iowa City?

I'm so glad that Theo is doing well now. He is definitely in good

hands with Dr. H!

Thanks for sharing the note about the " garden variety clubfoot "

comment- I got a chuckle out of that- though I'm sure you wanted to

strangle the guy at the time! :)

Best of luck with your insurance fight and we look forward to

hearing about Theo's progress!

& (3-16-00, left cf)

http://ponseticlubfoot.freeservers.com

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Guest guest

Welcome, Helen and Theo!

I don't have any personal experience with the insurance fight, but I

know that a number of parents have appealed to their insurance group

for coverage (not sure about HMO's specifically) and won, and some

parents are still in the fight as well.

Hopefully they'll chime in for you. You can search the archives

regarding this too, though it can be tedious to go through the

archives now since there are so many messages.

There is now a certified Ponseti doctor in Michigan. Dr. near

Grand Rapids. I would recommend that you consider going to him for

Theo's follow up appointments once correction is achieved to save

yourself some long distance traveling.

I am very curious as to why you chose to fly to Baltimore for

treatments versus going to Iowa City?

I'm so glad that Theo is doing well now. He is definitely in good

hands with Dr. H!

Thanks for sharing the note about the " garden variety clubfoot "

comment- I got a chuckle out of that- though I'm sure you wanted to

strangle the guy at the time! :)

Best of luck with your insurance fight and we look forward to

hearing about Theo's progress!

& (3-16-00, left cf)

http://ponseticlubfoot.freeservers.com

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Guest guest

Hi ! Dr Ponseti told us about Dr , and said he was very

good with newborns, but Dr P was concerned that he didn't have any

experience with babies Theo's age (10 months). We chose to go to

Baltimore as Dr P recommended Dr Herzenberg so highly and given

neither my husband Pat nor I had much vacation time left after our

maternity/paternity leaves and so couldn't stay there for the weeks

required. FLying back and forth is easier to Baltimore from here

than to Iowa. Also we wanted to try to minimize disruption to our

other kids, 8 and 5. BUT, I do hope to meet Dr P someday. I am in

geriatrics, so corresponding with him was fantastic-- both on a

personal and professional level!

If anyone has any thoughts about the insurance fight, please share.

I will go thru the archives as well.

Helen and Theo

> Welcome, Helen and Theo!

> I don't have any personal experience with the insurance fight, but

I

> know that a number of parents have appealed to their insurance

group

> for coverage (not sure about HMO's specifically) and won, and some

> parents are still in the fight as well.

> Hopefully they'll chime in for you. You can search the archives

> regarding this too, though it can be tedious to go through the

> archives now since there are so many messages.

> There is now a certified Ponseti doctor in Michigan. Dr.

near

> Grand Rapids. I would recommend that you consider going to him for

> Theo's follow up appointments once correction is achieved to save

> yourself some long distance traveling.

> I am very curious as to why you chose to fly to Baltimore for

> treatments versus going to Iowa City?

> I'm so glad that Theo is doing well now. He is definitely in good

> hands with Dr. H!

> Thanks for sharing the note about the " garden variety clubfoot "

> comment- I got a chuckle out of that- though I'm sure you wanted to

> strangle the guy at the time! :)

> Best of luck with your insurance fight and we look forward to

> hearing about Theo's progress!

> & (3-16-00, left cf)

> http://ponseticlubfoot.freeservers.com

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Guest guest

Hi ! Dr Ponseti told us about Dr , and said he was very

good with newborns, but Dr P was concerned that he didn't have any

experience with babies Theo's age (10 months). We chose to go to

Baltimore as Dr P recommended Dr Herzenberg so highly and given

neither my husband Pat nor I had much vacation time left after our

maternity/paternity leaves and so couldn't stay there for the weeks

required. FLying back and forth is easier to Baltimore from here

than to Iowa. Also we wanted to try to minimize disruption to our

other kids, 8 and 5. BUT, I do hope to meet Dr P someday. I am in

geriatrics, so corresponding with him was fantastic-- both on a

personal and professional level!

If anyone has any thoughts about the insurance fight, please share.

I will go thru the archives as well.

Helen and Theo

> Welcome, Helen and Theo!

> I don't have any personal experience with the insurance fight, but

I

> know that a number of parents have appealed to their insurance

group

> for coverage (not sure about HMO's specifically) and won, and some

> parents are still in the fight as well.

> Hopefully they'll chime in for you. You can search the archives

> regarding this too, though it can be tedious to go through the

> archives now since there are so many messages.

> There is now a certified Ponseti doctor in Michigan. Dr.

near

> Grand Rapids. I would recommend that you consider going to him for

> Theo's follow up appointments once correction is achieved to save

> yourself some long distance traveling.

> I am very curious as to why you chose to fly to Baltimore for

> treatments versus going to Iowa City?

> I'm so glad that Theo is doing well now. He is definitely in good

> hands with Dr. H!

> Thanks for sharing the note about the " garden variety clubfoot "

> comment- I got a chuckle out of that- though I'm sure you wanted to

> strangle the guy at the time! :)

> Best of luck with your insurance fight and we look forward to

> hearing about Theo's progress!

> & (3-16-00, left cf)

> http://ponseticlubfoot.freeservers.com

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Guest guest

Helen,

Where in Michigan do you live? We are in the Detroit area and are seen at

Children's Hospital in Detroit. What doctor are you seeing, if I may ask? We

see Dr. Mendelow he has been using the Ponseti Method with great success for

many years. Our son had bilateral clubfeet, our first doctor said he used the

Ponseti Method, but did not and we had to switch doctors in order to get the

right treatment for him. Our son is now 2 1/2 years old and is doing great.

Still wearing his brace at night.

If you have any questions feel free to ask me. If you feel more comfortable

emailing me privately you can at bruceandcarolyn@...

Carolyn and Bruce (11-17-02 blc)

dealing with HMOs

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

Helen,

Where in Michigan do you live? We are in the Detroit area and are seen at

Children's Hospital in Detroit. What doctor are you seeing, if I may ask? We

see Dr. Mendelow he has been using the Ponseti Method with great success for

many years. Our son had bilateral clubfeet, our first doctor said he used the

Ponseti Method, but did not and we had to switch doctors in order to get the

right treatment for him. Our son is now 2 1/2 years old and is doing great.

Still wearing his brace at night.

If you have any questions feel free to ask me. If you feel more comfortable

emailing me privately you can at bruceandcarolyn@...

Carolyn and Bruce (11-17-02 blc)

dealing with HMOs

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 Helen,

I just came across the following message (see link) in the archives.

I'm in Canada so I'm not sure if any of it will help you with your

fight with your HMO but it's worth a shot. Here's the link:

http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/34094

Hope this helps,

Daiga and Owen, 02/04/03

Unilateral LCF, FAB 14/7 (nights & naps)

> 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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