Re: Traveling for a doctor

[Guest guest]

Hi Donna,

There is a poll for how far everyone is travelling:

http://health.groups.yahoo.com/group/nosurgery4clubfoot/surveys?id=1709012

I think most people travelling far stay for the whole

initial casting instead of travelling weekly. I think

the check-ups are 3-monthly to start with and then

6-monthly and yearly but I'm not sure.

We're probably one of the people travelling least

since we live less than 10 minutes from the hospital.

We go for more frequent check-ups, partially

because Alister was the first baby treated with the

Ponseti method there and he's kind of the 'test case',

and probably partially also because we're so close and

can come easily.

with (3y)

and Alister (3y, right CF, Ponseti method, UK)

--- Donna Casady wrote:

> Okay, I've already looked at that list of doctors.

> Now my question is how far do some of you travel?

> We'd have to travel from the Mobile, AL area as far

> as to Atlanta or Orlando to the closest doctor on

> this list. With casting being done every week, how

> many of you travel that far? After getting the bar

> on, does it require frequent visits? Would we maybe

> only have to travel that far for about 4 weeks and

> then be able to avoid that trip for the 3 months

> he'll wear the bar? Am I understsanding right? All

> this is new info to me as of last night, so I'm sure

> I didn't absorb everything I read! Thanks,

>

> Donna

>

> [Non-text portions of this message have been

> removed]

>

>

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[Guest guest]

Hi Donna!. I am really new here but I will tell you what I have

learned very recently the hard way. I would strongly recommend you

take your little one as far as necessary to go to a Ponseti CERTIFIED

doctor. I made the mistake of taking my daughter to a doctor who

practiced the Ponseti method but didn't actually to a " T " and now

that she is one year, I am dealing with the repercussions of that

decision. I have seen there are parents on this board who have

stayed at the Mc house while their little ones have

undergone clubfoot treatment far from home and hopefully one of them

will tell you how they managed.

I wish you the best.

>

> Okay, I've already looked at that list of doctors. Now my question

is how far do some of you travel? We'd have to travel from the

Mobile, AL area as far as to Atlanta or Orlando to the closest doctor

on this list. With casting being done every week, how many of you

travel that far? After getting the bar on, does it require frequent

visits? Would we maybe only have to travel that far for about 4

weeks and then be able to avoid that trip for the 3 months he'll wear

the bar? Am I understsanding right? All this is new info to me as

of last night, so I'm sure I didn't absorb everything I read! Thanks,

>

> Donna

>

>

[Guest guest]

Donna,

Seeing your previous post mentioning that the baby you're adopting will

have spina bifida and hydrocephalus in addition to his clubfoot, I think

you need to know that your son's case might be quite different. I don't

see Joy posting today, but her 6 month old son Grant was also born with

Spina Bifida and Hydrocephalus. She is quite busy as Grant is her

fourth child (and second with clubfoot). I would urge you to email her

privately at joybelle15 @ yahoo.com (without the spaces). She also has a

website set up for Grant at

http://www.caringbridge.org/visit/grantphilip if you'd like to learn

more about their story.

Jakob - 2-9-98 bcf

-8 8-11-04 straight feet

Donna Casady wrote:

> Okay, I've already looked at that list of doctors. Now my question is

> how far do some of you travel? We'd have to travel from the Mobile,

> AL area as far as to Atlanta or Orlando to the closest doctor on this

> list. With casting being done every week, how many of you travel that

> far? After getting the bar on, does it require frequent visits?

> Would we maybe only have to travel that far for about 4 weeks and then

> be able to avoid that trip for the 3 months he'll wear the bar? Am I

> understsanding right? All this is new info to me as of last night, so

> I'm sure I didn't absorb everything I read! Thanks,

>

> Donna

[Guest guest]

Hi there Donna,

Welcome to the group ! So are you expecting a baby soon? If so,

congratulations!!

Ponseti treatment is just so superior to any other method of treating

club foot that many parents have travled hundreds if not thousands of

miles to see a certified doctor. Coming to the USA from as far as

Italy and South Africa...it is just that good! There is NO longer any

need to cut open the feet causing painful scar tissue to form to

treat club foot that's for sure ))

Casting is done weekly although Dr. Ponseti does perscribe an

excellerated casting (every 5 days) for families travelling long

distances to Iowa. Whether the certified doc that you decide to see

will do this as well, well, just depends on the doc. It usually takes

between 5-7 casts to fully correct the foot (our daughter had 4) and

then baby goes into the FAB for the 3 mos of full time wear. The doc.

will want to see you at the end of that 3 mos to give the OK to

reduce hours and then you usually see the doc every 6 mos or so.

More and more doctors are submiting the case files needed to become

certified all the time (many overseas as well which is great because

that is such a long way to have to come for treatment!). Once they

are trained by a certified doctor, they must send a certian # of

cases - with all documentation of treatment - to show that they have

sucessfully treated a baby with the method to be certified.

It has really been with the help of the internet (in the last 5 or 6

yrs) that the success rates (close to 98% now) have come to light and

parents are demanding this treatment and willing to travel to get it.

This has helped to open the eyes of the ortheapedic community and

more and more doc's are training in it all the time.

I am not too sure how up to date the list of certified doc's

is...there are quite a few docs not on it as of yet that parents here

have had great results with so it's good that you have let us know

where you are. Hopefully someone in your area can recommend a good

Ponseti doctor closest to you

Again, welcome

& Grace 20mos

unilateral right club foot FAB (foot abduction brace) 13hrs

>

> Okay, I've already looked at that list of doctors. Now my question

is how far do some of you travel? We'd have to travel from the

Mobile, AL area as far as to Atlanta or Orlando to the closest doctor

on this list. With casting being done every week, how many of you

travel that far? After getting the bar on, does it require frequent

visits? Would we maybe only have to travel that far for about 4

weeks and then be able to avoid that trip for the 3 months he'll wear

the bar? Am I understsanding right? All this is new info to me as

of last night, so I'm sure I didn't absorb everything I read! Thanks,

>

> Donna

>

>

[Guest guest]

Sorry Donna, just saw your earlier post explaining that you will be

adopting...congrats!!

As pointed out, Joy will be an excellent person for you to

speak with! She is a wonderful woman and will be willing to share her

experiences/advise with you for sure!

& Grace

> >

> > Okay, I've already looked at that list of doctors. Now my

question

> is how far do some of you travel? We'd have to travel from the

> Mobile, AL area as far as to Atlanta or Orlando to the closest

doctor

> on this list. With casting being done every week, how many of you

> travel that far? After getting the bar on, does it require

frequent

> visits? Would we maybe only have to travel that far for about 4

> weeks and then be able to avoid that trip for the 3 months he'll

wear

> the bar? Am I understsanding right? All this is new info to me as

> of last night, so I'm sure I didn't absorb everything I read!

Thanks,

> >

> > Donna

> >

> >

[Guest guest]

Donna, we see the group of dr.s in Orlando that are Ponseti certified and they

are WONDERFUL. If you decide to go that route let me know and maybe we can hook

up while you are in town There is a Mc house around the corner

from where they are so I'm sure something could be worked out!

Good luck in making your decision!

Marcia

Re: Traveling for a doctor

Hi there Donna,

Welcome to the group ! So are you expecting a baby soon? If so,

congratulations!!

Ponseti treatment is just so superior to any other method of treating

club foot that many parents have travled hundreds if not thousands of

miles to see a certified doctor. Coming to the USA from as far as

Italy and South Africa...it is just that good! There is NO longer any

need to cut open the feet causing painful scar tissue to form to

treat club foot that's for sure ))

Casting is done weekly although Dr. Ponseti does perscribe an

excellerated casting (every 5 days) for families travelling long

distances to Iowa. Whether the certified doc that you decide to see

will do this as well, well, just depends on the doc. It usually takes

between 5-7 casts to fully correct the foot (our daughter had 4) and

then baby goes into the FAB for the 3 mos of full time wear. The doc.

will want to see you at the end of that 3 mos to give the OK to

reduce hours and then you usually see the doc every 6 mos or so.

More and more doctors are submiting the case files needed to become

certified all the time (many overseas as well which is great because

that is such a long way to have to come for treatment!). Once they

are trained by a certified doctor, they must send a certian # of

cases - with all documentation of treatment - to show that they have

sucessfully treated a baby with the method to be certified.

It has really been with the help of the internet (in the last 5 or 6

yrs) that the success rates (close to 98% now) have come to light and

parents are demanding this treatment and willing to travel to get it.

This has helped to open the eyes of the ortheapedic community and

more and more doc's are training in it all the time.

I am not too sure how up to date the list of certified doc's

is...there are quite a few docs not on it as of yet that parents here

have had great results with so it's good that you have let us know

where you are. Hopefully someone in your area can recommend a good

Ponseti doctor closest to you

Again, welcome

& Grace 20mos

unilateral right club foot FAB (foot abduction brace) 13hrs

>

> Okay, I've already looked at that list of doctors. Now my question

is how far do some of you travel? We'd have to travel from the

Mobile, AL area as far as to Atlanta or Orlando to the closest doctor

on this list. With casting being done every week, how many of you

travel that far? After getting the bar on, does it require frequent

visits? Would we maybe only have to travel that far for about 4

weeks and then be able to avoid that trip for the 3 months he'll wear

the bar? Am I understsanding right? All this is new info to me as

of last night, so I'm sure I didn't absorb everything I read! Thanks,

>

> Donna

>

>

[Guest guest]

Hello Donna. Congrats on your upcoming addition to the family!

If your adopted son? has SB, I highly recommend going to the best of the best.

There is a lot more involved when treating clubfoot with SB. Joy will have to

give you all the details, but I am pretty sure their feet respond differently

when they have SB in conjunction with clubfeet ( and I can be wrong).

The best on the East coast is Doctor Herzenberg in Baltimore. He works at the

Sinai Hospital (Rubin Institute for Advanced Orthopaedics) and I believe there

is a Mc house there as well. Go to

http://www.lifebridgehealth.org to read more info.

HTH.

Donna Casady wrote:

Okay, I've already looked at that list of doctors. Now my question is how far

do some of you travel? We'd have to travel from the Mobile, AL area as far as

to Atlanta or Orlando to the closest doctor on this list. With casting being

done every week, how many of you travel that far? After getting the bar on,

does it require frequent visits? Would we maybe only have to travel that far

for about 4 weeks and then be able to avoid that trip for the 3 months he'll

wear the bar? Am I understsanding right? All this is new info to me as of last

night, so I'm sure I didn't absorb everything I read! Thanks,

Donna

[Guest guest]

Donna I live in Mississippi and travel to St Louis, Mo to have my son

treated for bilateral clubfeet. we started at a non ponseti doc and was not

happy

so the certified doc was up there and am very happy that i did..

amber & nathan

[Guest guest]

Hi Donna! I would love to only travel that far! We travel from western

South Dakota to just about eastern Iowa- 11 hrs one way. The first

time Dh stayed with Lucas at the RMH for the casting. We go back in a

few weeks for his 3 month check up. From there, I'm not sure how often

the appts will be. But, Lucas did great traveling. We made sure to

stop often to change him and let him stretch and give him snacks. In

the car we had his fav. toys, stuffed elephant, and blanket.

Jenn

[Guest guest]

Hi Donna,

Yes, we did travel 1,531 miles one way when we drove it from Idaho to

Iowa for our daughter's treatment. She was born with bilateral

clubfeet in China and came home to us at almost 3 years old. Dr.

Ponseti and Dr. Morcuende are amazing and even though it was a little

hard to do with our family split up physically, it did work well. My

daughter and I stayed over 3 months at the Mc House

because our daughter's case was so severe. We went out there the

middle of August and returned home the day before Thanksgiving

following her surgery (ATTT and tenotomy on both feet). We did come

home 3 times for 3 days the first trip, 5 days the second trip, and 9

days the 3rd trip. We did return for a week in January to get her

casts off and then another short trip in February. We will be going

back again soon. I would travel that distance again for her

treatment, as our goal was for her to have healthy pain free feet for

the rest of her life. I would urge you to make sure the doctor you

choose to go to is on Dr. Ponseti's list and you have interviewed

him/her with the list of questions on Ponseti's website to make sure

he's honestly doing the method 100%. We were lied to by the first

doctor we traveled to in Utah, telling us he was Ponseti trained when

in fact he had only attended a workshop. Had I had the list of

questions to ask him from the website I would have known different.

Luckily through more research and mother's intuition I knew we were

not with the right doctor. That's when we found Dr. Ponseti. Take

care and good luck to you and your child.

Joyce

>

> Okay, I've already looked at that list of doctors. Now my question

is how far do some of you travel? We'd have to travel from the

Mobile, AL area as far as to Atlanta or Orlando to the closest doctor

on this list. With casting being done every week, how many of you

travel that far? After getting the bar on, does it require frequent

visits? Would we maybe only have to travel that far for about 4

weeks and then be able to avoid that trip for the 3 months he'll wear

the bar? Am I understsanding right? All this is new info to me as

of last night, so I'm sure I didn't absorb everything I read! Thanks,

>

> Donna

>

>

[Guest guest]

Donna,

We didn't travel as far as some on the list did, but we traveled 4.5

hours by car to a Ponseti doctor. After the first trip I knew we

couldn't continue to do it by car every week. So I called Angel

Flight and we flew down every week while casting and for the

tenotomy. It was probably 7 weeks including his tenotomy, then we

didn't go for 3 weeks while his heel healed, then when he went into

the brace we started going every three months. We did that three

times and now it's been 7 months since we've seen the doctor. It's

very hard at first, but if you can fly with Angel Flight that makes

it much easier. And when you think about it, you'll be done with the

weekly traveling after 2 months or less.

and bilateral cf dbb 14/7

>

> Okay, I've already looked at that list of doctors. Now my

question is how far do some of you travel? We'd have to travel from

the Mobile, AL area as far as to Atlanta or Orlando to the closest

doctor on this list. With casting being done every week, how many

of you travel that far? After getting the bar on, does it require

frequent visits? Would we maybe only have to travel that far for

about 4 weeks and then be able to avoid that trip for the 3 months

he'll wear the bar? Am I understsanding right? All this is new

info to me as of last night, so I'm sure I didn't absorb everything

I read! Thanks,

>

> Donna

>

>

[Guest guest]

How about Miracle Flights?? We used them and they were GREAT!

They can get commercial tickets, so it would be a pressurized flight.

http://www.miracleflights.org

HTH,

in Iowa, mom to 4yrs. bilateral clubfoot, soon to

have ATTT surgery

>

> Thank you for the Angel Flight suggestion. I'd already thought of

using them. We've used them once for our daughter. From the little

I've learned so far about Hydrocephalus ( has it), if I

remember right, a Hydrocephalus patient cannot fly in an

unpressurized aircraft. That would rule out Angel Flight from what

I understand. Great idea, though. Others should check into it!

>

> Donna

>

>

[Guest guest]

I'm not sure if someone already mentioned this I'm really behind on

the boards but how about North West Kid Cares it's at

http://www.nwa.com we just flew with them round trip from NJ to Iowa

for Collin's 6 month followup from his ATTT.

Michele

Collin's story at

http://www.geocities.com/chele323232