Guest guest Posted July 6, 2006 Report Share Posted July 6, 2006 Everyone has been so helpful on this website and I truly thank you! Our soon to be daughter was recently diagnosed with bilateral cf and ever since I have been in a state of desperation. I always anticipate the worst and you all have been very helpful in getting me through that. We live in CT and there are no Ponseti certified docs in my area and after speaking with Dr. Ponseti, there are none in the state. My options are Boston or NYC or Iowa. I also have an insurance issue. Out of all those docs, Dr. Ponseti is the only one to take my insurance. The others I will need to make arrnagements with or pay out of pocket. I am scared to go all the way to Iowa with a newborn. First the flight, what happens when I get back? What if there is an issue? I can't just jump a plane for Iowa....what about checkups? etc. I was hoping some of you have had experience in this......i know many of you have made the trip successfully. Thank you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2006 Report Share Posted July 6, 2006 Hi We flew from Johannesburg (South Africa) to Iowa for treatment when was 10 weeks old. We found out about Dr Ponseti after 9 weeks of totally unsuccessful casts that were a waste of time and was facing major surgery on both his feet. To cut a long story short, Dr Ponseti corrected his feet - on an accelerated casting timetable of cast changes every 5 days that he uses for out of town patients - within 16 days. I fully understand your concerns about travelling with a newborn, I was terrified about it. If my husband Steve hadn't been able to come with me, I probably would have taken a friend. But in the end it was all so comforting - staying at Mac house, meeting Dr Ponseti and his wonderful staff. Everyone was so supportive and made sure we were comfortable. The volunteers at Mac even took us to buy extra groceries and drove us to and from the hospital for appointments - which was great because it was snowing for the first few days. Also, you don't have to rush there as soon as your baby is born, you could wait a couple of weeks before you go. I asked Dr Ponseti about follow ups. He told us he has seen patients from around the world and thanks to the wonders of the internet, all you have to do is email pics of his feet every few months (even video clips once your child is walking) and he can do the checkups like that. is 3.5 now and even though we now have a couple of Ponseti doctors here, I still email Dr Ponseti with updates of and follow his advice. We've never had the opportunity to return to Iowa although I'd love to go and see Dr Ponseti again. Living in the US, you could probably alternate this with a visit every 6 months to year if you need to. Or you could do follow-ups with one of the NY Ponseti doctors, like Feldman or Sher, who are both recommended by Dr Ponseti. I can honestly say that my initial panic and fears was for nothing, it was a great experience and one that we'll be grateful about forever. And you have the chance that many wish they could have - to see the 'master' - the person who developed this wonderful technique. I hope that our experience helps to ease your worries. You can read about it and other clubfoot tips/info at the website I designed when we got back from Iowa. www.clubfoot.co.za <http://www.clubfoot.co.za/> Enjoy your new baby! Moss CEO Steps Charity Tel: <http://www.steps.org.za> www.steps.org.za _____ From: nosurgery4clubfoot [mailto:nosurgery4clubfoot ] On Behalf Of babywithclubfoot Sent: 06 July 2006 09:11 PM To: nosurgery4clubfoot Subject: Advice on Heading to Iowa Everyone has been so helpful on this website and I truly thank you! Our soon to be daughter was recently diagnosed with bilateral cf and ever since I have been in a state of desperation. I always anticipate the worst and you all have been very helpful in getting me through that. We live in CT and there are no Ponseti certified docs in my area and after speaking with Dr. Ponseti, there are none in the state. My options are Boston or NYC or Iowa. I also have an insurance issue. Out of all those docs, Dr. Ponseti is the only one to take my insurance. The others I will need to make arrnagements with or pay out of pocket. I am scared to go all the way to Iowa with a newborn. First the flight, what happens when I get back? What if there is an issue? I can't just jump a plane for Iowa....what about checkups? etc. I was hoping some of you have had experience in this......i know many of you have made the trip successfully. Thank you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2006 Report Share Posted July 6, 2006 Hi , I know exactly how you feel - we did the trip last August - about a year ago. And as write, it was a memorable experience and we are truly grateful. Actually 's emails and website was a great encouragement for us to go! We went when our baby was 3.5 weeks old - our pediatrician just told us to watch closely as sometimes babies less than a month old have trouble adjusting to the altitude. She told us IF(it normally does not happen) she stops breathing to shake her a little and she will be fine. We were terrified, but everything was fine. Joyce, Dr. Ponseti's secretary, told us that we didn't need to fly out to Iowa as soon as the baby was born. She told us to bond with the baby and and enjoy her. She said that it doesn't matter if you wait a couple of weeks. Dr. Ponseti and his team were wonderful - and so was the Mac House. We were there for 3 weeks and met such wonderful people. had 5 casts and a tenotomy and we were sent home with perfect feet! We have been doing follow ups with Dr. Ponseti - the first time was about 3 months later, and then 4 months later, and now we're going back in 6 months. Northwest has a wonderful program and let us fly once for free. Another time, Dr. Ponseti was in San Diego for a conference (we live in San Francisco) and he offered to see there. He is an amazing and caring doctor. Of course I had questions once we were home, but Dr. Ponseti answered my questions via email and this group is very supportive, so you will be just fine. Please relax and just call Joyce when your baby is born - she will set up an appointment for you. Good luck! Best, Yuuko and (DOB 8-4-06; P/M 12-4/7) > > Hi > > > > We flew from Johannesburg (South Africa) to Iowa for treatment when was > 10 weeks old. We found out about Dr Ponseti after 9 weeks of totally > unsuccessful casts that were a waste of time and was facing major > surgery on both his feet. To cut a long story short, Dr Ponseti corrected > his feet - on an accelerated casting timetable of cast changes every 5 days > that he uses for out of town patients - within 16 days. > > > > I fully understand your concerns about travelling with a newborn, I was > terrified about it. If my husband Steve hadn't been able to come with me, I > probably would have taken a friend. But in the end it was all so comforting > - staying at Mac house, meeting Dr Ponseti and his wonderful > staff. Everyone was so supportive and made sure we were comfortable. The > volunteers at Mac even took us to buy extra groceries and drove > us to and from the hospital for appointments - which was great because it > was snowing for the first few days. Also, you don't have to rush there as > soon as your baby is born, you could wait a couple of weeks before you go. > > > > I asked Dr Ponseti about follow ups. He told us he has seen patients from > around the world and thanks to the wonders of the internet, all you have to > do is email pics of his feet every few months (even video clips once your > child is walking) and he can do the checkups like that. > > > > is 3.5 now and even though we now have a couple of Ponseti doctors > here, I still email Dr Ponseti with updates of and follow his advice. > We've never had the opportunity to return to Iowa although I'd love to go > and see Dr Ponseti again. Living in the US, you could probably alternate > this with a visit every 6 months to year if you need to. Or you could do > follow-ups with one of the NY Ponseti doctors, like Feldman or Sher, who are > both recommended by Dr Ponseti. > > > > I can honestly say that my initial panic and fears was for nothing, it was a > great experience and one that we'll be grateful about forever. And you have > the chance that many wish they could have - to see the 'master' - the person > who developed this wonderful technique. > > > > I hope that our experience helps to ease your worries. You can read about > it and other clubfoot tips/info at the website I designed when we got back > from Iowa. www.clubfoot.co.za <http://www.clubfoot.co.za/> > > > > Enjoy your new baby! > > > > > > Moss > > CEO Steps Charity > > > > Tel: > > <http://www.steps.org.za> www.steps.org.za > > _____ > > From: nosurgery4clubfoot > [mailto:nosurgery4clubfoot ] On Behalf Of babywithclubfoot > Sent: 06 July 2006 09:11 PM > To: nosurgery4clubfoot > Subject: Advice on Heading to Iowa > > > > Everyone has been so helpful on this website and I truly thank you! > > Our soon to be daughter was recently diagnosed with bilateral cf and > ever since I have been in a state of desperation. I always anticipate > the worst and you all have been very helpful in getting me through > that. > > We live in CT and there are no Ponseti certified docs in my area and > after speaking with Dr. Ponseti, there are none in the state. My > options are Boston or NYC or Iowa. I also have an insurance issue. Out > of all those docs, Dr. Ponseti is the only one to take my insurance. > The others I will need to make arrnagements with or pay out of pocket. > > I am scared to go all the way to Iowa with a newborn. First the > flight, what happens when I get back? What if there is an issue? I > can't just jump a plane for Iowa....what about checkups? etc. I was > hoping some of you have had experience in this......i know many of you > have made the trip successfully. > > Thank you, > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2006 Report Share Posted July 6, 2006 Hi , I think we spoke through BBC and email - not sure. Dr. Ponseti sees his own patients, however if your child needs a tenotomy Dr. Morcuende will more than likely perform that (I don't think Dr. Ponseti does them, he didn't for Zach). You think Dr. Ponseti is an amazing man from speaking to him on the telephone, wait until you meet him - you will truly feel that you have met an angel. He's a wonderful man, and you won't be disappointed in the least. We drove to Iowa City - and Zach slept the entire trip. (well, stopping to b/f every couple of hours) My guess is your little one will sleep for the entire flight, so I wouldn't be concerned about that. In terms of checkups - more times than not you can simply send Dr. Ponseti pictures or video and that will be enough. I didn't read the other responses, so you may have already mentioned this, but will you stay for the duration of the treatment? You'll be FINE! Really you will. You sound just like me with the way you worry. Big hugs to you! Holly Zachary 7/27/02 Unilateral Right C/F Treated by Dr. Ponseti DBB Nights Only > > Everyone has been so helpful on this website and I truly thank you! > > Our soon to be daughter was recently diagnosed with bilateral cf and > ever since I have been in a state of desperation. I always anticipate > the worst and you all have been very helpful in getting me through > that. > > We live in CT and there are no Ponseti certified docs in my area and > after speaking with Dr. Ponseti, there are none in the state. My > options are Boston or NYC or Iowa. I also have an insurance issue. Out > of all those docs, Dr. Ponseti is the only one to take my insurance. > The others I will need to make arrnagements with or pay out of pocket. > > I am scared to go all the way to Iowa with a newborn. First the > flight, what happens when I get back? What if there is an issue? I > can't just jump a plane for Iowa....what about checkups? etc. I was > hoping some of you have had experience in this......i know many of you > have made the trip successfully. > > Thank you, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2006 Report Share Posted July 8, 2006 Hi , Congratulations on your soon-to-be-born daughter! I have a seven- month old who was born with a right club foot. I am in Canada so of course we have public health care and you can pretty much go see who you want but they won't pay for you to go to the US. We spoke with several doctors and I had along a list of questions to help ensure that the doctors were using the Ponseti-method in it's entirety and not modifying it. Although my daughter's doctor hadn't been certified by doctor Ponseti, he does follow his method. I wanted to be sure he fixed her foot properly so I e-mailed pics to Dr. Ponseti who thought it may have been overabducted and needed to be corrected a little more. I took my daughter to Iowa to see him directly and we stayed at the Mc House. Once he actually saw her foot in person and felt it, he said it was nicely corrected and he didn't need to fix anything. I was still so happy to have made the trip though. I would never regret it. I think it is an amazing stroke of luck that your insurance will cover you to go to U of Iowa to see Dr. Ponseti. I think that you will never regret this trip and if Dr. Ponseti does the entire treatment for your baby, you will know that it has been done properly and that in itself will bring you great peace of mind. The Mc House is a wonderful, affordable place to stay and I see that someone else has posted about the airlines that help babies like this to fly for free (along with one parent who flys at no charge as well). I think flying with a newborn is fairly easy as well. Once they get older and want to move around, it is much more challenging. There are many moms on here who have made the trip and have had their babies treatment completed by Dr. Ponseti who can tell you more about checkups or if you need to have follow-up. I just wanted to say that in as much as the trip might feel overwhelming, I believe that you won't regret it at all and you will happy to know that you've had the best doctor in the world fix your daughter's feet. Take care and try to relax (i know it's not easy). Halley > > Everyone has been so helpful on this website and I truly thank you! > > Our soon to be daughter was recently diagnosed with bilateral cf and > ever since I have been in a state of desperation. I always anticipate > the worst and you all have been very helpful in getting me through > that. > > We live in CT and there are no Ponseti certified docs in my area and > after speaking with Dr. Ponseti, there are none in the state. My > options are Boston or NYC or Iowa. I also have an insurance issue. Out > of all those docs, Dr. Ponseti is the only one to take my insurance. > The others I will need to make arrnagements with or pay out of pocket. > > I am scared to go all the way to Iowa with a newborn. First the > flight, what happens when I get back? What if there is an issue? I > can't just jump a plane for Iowa....what about checkups? etc. I was > hoping some of you have had experience in this......i know many of you > have made the trip successfully. > > Thank you, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2006 Report Share Posted July 9, 2006 Thank you to everyone that responded to me regarding heading to Iowa. You all had such wonderful experiences that certainly made me feel comfortable if we do decide to go. I now have no hesitiation. In a previous post I asked about Dr. Von Bosse and also received many kind posts regarding experiences with him. We have scheduled a consultation with his office and we will decide from there. He is about and hour and a half away and for some reason having that peace of mind is valuable to me. He also accepts my insurance. Dr. Ponseti recommended him without hesitation. If we are uncomfortable, we now know heading to Iowa would be easy and a blessing. Thank you to all of you! Advice on Heading to Iowa Everyone has been so helpful on this website and I truly thank you! Our soon to be daughter was recently diagnosed with bilateral cf and ever since I have been in a state of desperation. I always anticipate the worst and you all have been very helpful in getting me through that. We live in CT and there are no Ponseti certified docs in my area and after speaking with Dr. Ponseti, there are none in the state. My options are Boston or NYC or Iowa. I also have an insurance issue. Out of all those docs, Dr. Ponseti is the only one to take my insurance. The others I will need to make arrnagements with or pay out of pocket. I am scared to go all the way to Iowa with a newborn. First the flight, what happens when I get back? What if there is an issue? I can't just jump a plane for Iowa....what about checkups? etc. I was hoping some of you have had experience in this......i know many of you have made the trip successfully. Thank you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2006 Report Share Posted July 9, 2006 You sound very prepared! Good luck with everything. While I don't have experience with Dr. Van Bosse, I have heard good things. Hopefully, he? will work out for you. Dr. Ponseti is wonderful. We had the pleasure of meeting him once, and he was a wonderful man and a great doctor. Good Luck as you start your journey! s wrote: Thank you to everyone that responded to me regarding heading to Iowa. You all had such wonderful experiences that certainly made me feel comfortable if we do decide to go. I now have no hesitiation. In a previous post I asked about Dr. Von Bosse and also received many kind posts regarding experiences with him. We have scheduled a consultation with his office and we will decide from there. He is about and hour and a half away and for some reason having that peace of mind is valuable to me. He also accepts my insurance. Dr. Ponseti recommended him without hesitation. If we are uncomfortable, we now know heading to Iowa would be easy and a blessing. Thank you to all of you! Advice on Heading to Iowa Everyone has been so helpful on this website and I truly thank you! Our soon to be daughter was recently diagnosed with bilateral cf and ever since I have been in a state of desperation. I always anticipate the worst and you all have been very helpful in getting me through that. We live in CT and there are no Ponseti certified docs in my area and after speaking with Dr. Ponseti, there are none in the state. My options are Boston or NYC or Iowa. I also have an insurance issue. Out of all those docs, Dr. Ponseti is the only one to take my insurance. The others I will need to make arrnagements with or pay out of pocket. I am scared to go all the way to Iowa with a newborn. First the flight, what happens when I get back? What if there is an issue? I can't just jump a plane for Iowa....what about checkups? etc. I was hoping some of you have had experience in this......i know many of you have made the trip successfully. Thank you, Quote Link to comment Share on other sites More sharing options...
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