Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 I knew had clubfeet and was treated with surgery initially, but I didn't know the rest of the story. About finding out about Dr. Ponseti on the board, calling him, him calling you. I had tears in my eyes as I read. I always thought your story had a lot of impact on people having 2 babies with it--one treated surgically and the other treated Ponseti method, but wow.....the rest of the story. Pam and (8-12-01) > OK first of all let me say we're not trying to gang up on you or beat you up - your child is your child, your decison is your's to make and we respect that. > > With that said however, I have to say the rest of this, and while it may end up lengthy, please stay with me: > > I live in mid-eastern Oklahoma. We drove to Iowa City, Iowa to have our infant treated by Dr. Ponseti. That's a 10 t0 12 hour drive one-way depending on traffic and how well the kids travel that particular day. We load a cooler full of cheap pops and lunch meat then hit the road. All we buy is gas. > > Everett is my 11 month old son. We took him to Iowa City and stayed at the Mc House for three weeks - that is how long it took to go through a series of 5 casts. At that point he had the tenotomy people on here mention - it was a very minor thing done in about three minutes at the office with only local numbing on the heel area. My dh stayed in and watched. Then we came home with that last casts on and Everett wore those for an additional 3 weeks while his heel healed. Then we went in to the DBB. > > It was that simple. I " home schooled " my older child from the RMD house so he wouldn't get behind in his lessons at school. > > After the DBB begins, we go back to Iowa City every 3 months for a few visits, and now we go every 6 months or so for check ups only. We leave one day and come home the next day. > > I need to tell you about . He was born with clubfeet also, he's 6 years old now. He wore casts for 6 months and his doctor wanted to operate. He wanted to use Botox and all kinds of crap because frankly he wasn't getting any results. Why? Because he was a moron who had no business treating club feet. > > I was a moron too. I didn't question him. For all those months my baby went through hell. The casting was done wrong so it was all very painful. Not only that, but the doctor was doing more harm than good during those months. He was actually damaging 's clubfeet. After 6 months this doctor said " Well lets try physical therapy. " So endured about 18 months of physical therapy and AFO braces and meanwhile his feet were all balled up and crooked as ever so he couldn't walk, he could only hobble and fall down and cry with pain cuz his feet hurt him and his back hurt from wrenching it trying to walk, from the black eyes he got falling against corners and tables and every thing else. He lived on Motrin and Tylanol. > > And ignorant stupid me, I thought this was the way club feet was supposed to be. I STILL didn't ask enough questions. At nearly 2 yrs. old the doctor decided to operate. I had a very bad gut feeling about it. I didn't know much how to use the internet at that time but I muddled through an found this board only 2 months after it had been formed. They convinced me to send photos of to Dr. Ponseti. I did. > > Ponseti called me on the phone at home and said, " I need to see him as soon as possible, don't wait, just come - you find a way here and I'll see him when you get here. " > > No appointment, nothing, just COME NOW. So the board here told me about Angel Flights, I called them. In a week after talking to Dr. Ponseti my baby and I were on board this little plane flying to Iowa. > > It took a lot of doing, from Feburary to September of the year 2000, several Angel Flight trips back and forth, lots of time at the Mc House, but by the time Dr. Ponseti was finished, my son could run....remember he couldnt' even walk when we started. > > His feet will never be good - they suffered too much damage prior to finding the right doctor, but what Ponseti did was a lot of casting adjustments leading up to the ATTT operation which is a very MINIMAL procedure of taking one tendon and re-anchoring it in a new place. That's it. No bones were cut or broken, etc. like many surgeries do. > > I understand your child has a bone-alignment problem which is more complicated, but PLEASE consider talking to Dr. Ponseti about all this first. He is the Master of club feet in babies. He is SO good, he is so kind, so sweet, so generous. He doesn't let a baby cry. If the baby cries he stops work till the baby is happy. For 50 odd years he has devoted himself to club feet babies and I'm betting he's seen a case like yours before and may have insite. He at least has the experience your current doctor can't have by sheer time and devotion to one area of science. > > The Mcdonald houses charge a minor fee, but if you can't pay, they don't force you to. There is food there, free laundry, soap, shampoo, toilet paper, you name it. > > Shriners has a few Ponseti qualified doctors and they provide transportation and perhaps housing, I'm not sure. You may have to travel a long distance for this, but that's OK. > > If we on this board did not believe so strongly in the work of Dr. Ponseti we wouldn't be here day after day giving our testimony - it's the only way I really have to give back and make a silver lining around 's poor dark cloud of bad medical care years ago and some of the problems he still has today from it. > > What they say is true - if you do surgery now it cannot be reversed. Give it time - explore your options, keep an open mind. Your baby only has two feet and has to spend the rest of his life standing on those feet. Go put pebbles in your shoes today and spend the day walking on sore feet - like a pair of shoes your child will never ever be able to remove - to get an idea of what it'll be like to live on sore feet the rest of your entire life. > > If we didn't love you and didn't care we wouldn't bother spending our time here today. I owe both my son's ability to walk to Dr. Ponseti. > > s. > number23@c... > > Thanks for the welcome. We live in Maine and the closest trained > Ponseti doctors are in Massachusetts. It's not that far, but if we > have to go weekly it is. > > They changed his casts weekly and his legs and feet are much > improved. The problem is his achilles tendons are both too tight and > the bones in his feet are misaligned. This is what they'll be fixing > with the surgery. > > How is this surgery different from the tenotomy? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 > OK first of all let me say we're not trying to gang up on you or beat you up - your child is your child, your decison is your's to make and we respect that. > > With that said however, I have to say the rest of this, and while it may end up lengthy, please stay with me: > > I live in mid-eastern Oklahoma. We drove to Iowa City, Iowa to have our infant treated by Dr. Ponseti. That's a 10 t0 12 hour drive one-way depending on traffic and how well the kids travel that particular day. We load a cooler full of cheap pops and lunch meat then hit the road. All we buy is gas. > > Everett is my 11 month old son. We took him to Iowa City and stayed at the Mc House for three weeks - that is how long it took to go through a series of 5 casts. At that point he had the tenotomy people on here mention - it was a very minor thing done in about three minutes at the office with only local numbing on the heel area. My dh stayed in and watched. Then we came home with that last casts on and Everett wore those for an additional 3 weeks while his heel healed. Then we went in to the DBB. > > It was that simple. I " home schooled " my older child from the RMD house so he wouldn't get behind in his lessons at school. > > After the DBB begins, we go back to Iowa City every 3 months for a few visits, and now we go every 6 months or so for check ups only. We leave one day and come home the next day. > > I need to tell you about . He was born with clubfeet also, he's 6 years old now. He wore casts for 6 months and his doctor wanted to operate. He wanted to use Botox and all kinds of crap because frankly he wasn't getting any results. Why? Because he was a moron who had no business treating club feet. > > I was a moron too. I didn't question him. For all those months my baby went through hell. The casting was done wrong so it was all very painful. Not only that, but the doctor was doing more harm than good during those months. He was actually damaging 's clubfeet. After 6 months this doctor said " Well lets try physical therapy. " So endured about 18 months of physical therapy and AFO braces and meanwhile his feet were all balled up and crooked as ever so he couldn't walk, he could only hobble and fall down and cry with pain cuz his feet hurt him and his back hurt from wrenching it trying to walk, from the black eyes he got falling against corners and tables and every thing else. He lived on Motrin and Tylanol. > > And ignorant stupid me, I thought this was the way club feet was supposed to be. I STILL didn't ask enough questions. At nearly 2 yrs. old the doctor decided to operate. I had a very bad gut feeling about it. I didn't know much how to use the internet at that time but I muddled through an found this board only 2 months after it had been formed. They convinced me to send photos of to Dr. Ponseti. I did. > > Ponseti called me on the phone at home and said, " I need to see him as soon as possible, don't wait, just come - you find a way here and I'll see him when you get here. " > > No appointment, nothing, just COME NOW. So the board here told me about Angel Flights, I called them. In a week after talking to Dr. Ponseti my baby and I were on board this little plane flying to Iowa. > > It took a lot of doing, from Feburary to September of the year 2000, several Angel Flight trips back and forth, lots of time at the Mc House, but by the time Dr. Ponseti was finished, my son could run....remember he couldnt' even walk when we started. > > His feet will never be good - they suffered too much damage prior to finding the right doctor, but what Ponseti did was a lot of casting adjustments leading up to the ATTT operation which is a very MINIMAL procedure of taking one tendon and re-anchoring it in a new place. That's it. No bones were cut or broken, etc. like many surgeries do. > > I understand your child has a bone-alignment problem which is more complicated, but PLEASE consider talking to Dr. Ponseti about all this first. He is the Master of club feet in babies. He is SO good, he is so kind, so sweet, so generous. He doesn't let a baby cry. If the baby cries he stops work till the baby is happy. For 50 odd years he has devoted himself to club feet babies and I'm betting he's seen a case like yours before and may have insite. He at least has the experience your current doctor can't have by sheer time and devotion to one area of science. > > The Mcdonald houses charge a minor fee, but if you can't pay, they don't force you to. There is food there, free laundry, soap, shampoo, toilet paper, you name it. > > Shriners has a few Ponseti qualified doctors and they provide transportation and perhaps housing, I'm not sure. You may have to travel a long distance for this, but that's OK. > > If we on this board did not believe so strongly in the work of Dr. Ponseti we wouldn't be here day after day giving our testimony - it's the only way I really have to give back and make a silver lining around 's poor dark cloud of bad medical care years ago and some of the problems he still has today from it. > > What they say is true - if you do surgery now it cannot be reversed. Give it time - explore your options, keep an open mind. Your baby only has two feet and has to spend the rest of his life standing on those feet. Go put pebbles in your shoes today and spend the day walking on sore feet - like a pair of shoes your child will never ever be able to remove - to get an idea of what it'll be like to live on sore feet the rest of your entire life. > > If we didn't love you and didn't care we wouldn't bother spending our time here today. I owe both my son's ability to walk to Dr. Ponseti. > > s. > number23@c... I have tears in my eyes after reading your story. Thanks so much for taking the time to share it. My son's feet were put in casts, but the doctor did not use the Ponseti method. As I read more about the Ponseti method I think that's what he was trying to do, but wasn't doing it correctly. We had about 7 casts, then he put the shoes on him, but with no bar. Then he put him back in casts and at six months took x-rays. He referred us to another doctor with more experience, who I think may actually do the Ponseti method, but he suggested surgery. Now I'm wondering if he thought my son had had the Ponseti method and it didn't work, whereas my son never actually had the Ponseti method. I'm tempted to call him and ask him if he does the Ponseti method and see if he'll give my son a chance with that before he does the surgery. However, I'm afraid he may not do it right either. From reading all the responses to my posts it seems finding a qualified doctor is the most important thing. I'm still waiting to hear from Dr. Ponseti about a recommendation. I'm willing to go to Iowa if I have to, but if I can see someone closer that would be better. I have another child and it's hard for me to be away for long periods of time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 > OK first of all let me say we're not trying to gang up on you or beat you up - your child is your child, your decison is your's to make and we respect that. > > With that said however, I have to say the rest of this, and while it may end up lengthy, please stay with me: > > I live in mid-eastern Oklahoma. We drove to Iowa City, Iowa to have our infant treated by Dr. Ponseti. That's a 10 t0 12 hour drive one-way depending on traffic and how well the kids travel that particular day. We load a cooler full of cheap pops and lunch meat then hit the road. All we buy is gas. > > Everett is my 11 month old son. We took him to Iowa City and stayed at the Mc House for three weeks - that is how long it took to go through a series of 5 casts. At that point he had the tenotomy people on here mention - it was a very minor thing done in about three minutes at the office with only local numbing on the heel area. My dh stayed in and watched. Then we came home with that last casts on and Everett wore those for an additional 3 weeks while his heel healed. Then we went in to the DBB. > > It was that simple. I " home schooled " my older child from the RMD house so he wouldn't get behind in his lessons at school. > > After the DBB begins, we go back to Iowa City every 3 months for a few visits, and now we go every 6 months or so for check ups only. We leave one day and come home the next day. > > I need to tell you about . He was born with clubfeet also, he's 6 years old now. He wore casts for 6 months and his doctor wanted to operate. He wanted to use Botox and all kinds of crap because frankly he wasn't getting any results. Why? Because he was a moron who had no business treating club feet. > > I was a moron too. I didn't question him. For all those months my baby went through hell. The casting was done wrong so it was all very painful. Not only that, but the doctor was doing more harm than good during those months. He was actually damaging 's clubfeet. After 6 months this doctor said " Well lets try physical therapy. " So endured about 18 months of physical therapy and AFO braces and meanwhile his feet were all balled up and crooked as ever so he couldn't walk, he could only hobble and fall down and cry with pain cuz his feet hurt him and his back hurt from wrenching it trying to walk, from the black eyes he got falling against corners and tables and every thing else. He lived on Motrin and Tylanol. > > And ignorant stupid me, I thought this was the way club feet was supposed to be. I STILL didn't ask enough questions. At nearly 2 yrs. old the doctor decided to operate. I had a very bad gut feeling about it. I didn't know much how to use the internet at that time but I muddled through an found this board only 2 months after it had been formed. They convinced me to send photos of to Dr. Ponseti. I did. > > Ponseti called me on the phone at home and said, " I need to see him as soon as possible, don't wait, just come - you find a way here and I'll see him when you get here. " > > No appointment, nothing, just COME NOW. So the board here told me about Angel Flights, I called them. In a week after talking to Dr. Ponseti my baby and I were on board this little plane flying to Iowa. > > It took a lot of doing, from Feburary to September of the year 2000, several Angel Flight trips back and forth, lots of time at the Mc House, but by the time Dr. Ponseti was finished, my son could run....remember he couldnt' even walk when we started. > > His feet will never be good - they suffered too much damage prior to finding the right doctor, but what Ponseti did was a lot of casting adjustments leading up to the ATTT operation which is a very MINIMAL procedure of taking one tendon and re-anchoring it in a new place. That's it. No bones were cut or broken, etc. like many surgeries do. > > I understand your child has a bone-alignment problem which is more complicated, but PLEASE consider talking to Dr. Ponseti about all this first. He is the Master of club feet in babies. He is SO good, he is so kind, so sweet, so generous. He doesn't let a baby cry. If the baby cries he stops work till the baby is happy. For 50 odd years he has devoted himself to club feet babies and I'm betting he's seen a case like yours before and may have insite. He at least has the experience your current doctor can't have by sheer time and devotion to one area of science. > > The Mcdonald houses charge a minor fee, but if you can't pay, they don't force you to. There is food there, free laundry, soap, shampoo, toilet paper, you name it. > > Shriners has a few Ponseti qualified doctors and they provide transportation and perhaps housing, I'm not sure. You may have to travel a long distance for this, but that's OK. > > If we on this board did not believe so strongly in the work of Dr. Ponseti we wouldn't be here day after day giving our testimony - it's the only way I really have to give back and make a silver lining around 's poor dark cloud of bad medical care years ago and some of the problems he still has today from it. > > What they say is true - if you do surgery now it cannot be reversed. Give it time - explore your options, keep an open mind. Your baby only has two feet and has to spend the rest of his life standing on those feet. Go put pebbles in your shoes today and spend the day walking on sore feet - like a pair of shoes your child will never ever be able to remove - to get an idea of what it'll be like to live on sore feet the rest of your entire life. > > If we didn't love you and didn't care we wouldn't bother spending our time here today. I owe both my son's ability to walk to Dr. Ponseti. > > s. > number23@c... I have tears in my eyes after reading your story. Thanks so much for taking the time to share it. My son's feet were put in casts, but the doctor did not use the Ponseti method. As I read more about the Ponseti method I think that's what he was trying to do, but wasn't doing it correctly. We had about 7 casts, then he put the shoes on him, but with no bar. Then he put him back in casts and at six months took x-rays. He referred us to another doctor with more experience, who I think may actually do the Ponseti method, but he suggested surgery. Now I'm wondering if he thought my son had had the Ponseti method and it didn't work, whereas my son never actually had the Ponseti method. I'm tempted to call him and ask him if he does the Ponseti method and see if he'll give my son a chance with that before he does the surgery. However, I'm afraid he may not do it right either. From reading all the responses to my posts it seems finding a qualified doctor is the most important thing. I'm still waiting to hear from Dr. Ponseti about a recommendation. I'm willing to go to Iowa if I have to, but if I can see someone closer that would be better. I have another child and it's hard for me to be away for long periods of time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 > OK first of all let me say we're not trying to gang up on you or beat you up - your child is your child, your decison is your's to make and we respect that. > > With that said however, I have to say the rest of this, and while it may end up lengthy, please stay with me: > > I live in mid-eastern Oklahoma. We drove to Iowa City, Iowa to have our infant treated by Dr. Ponseti. That's a 10 t0 12 hour drive one-way depending on traffic and how well the kids travel that particular day. We load a cooler full of cheap pops and lunch meat then hit the road. All we buy is gas. > > Everett is my 11 month old son. We took him to Iowa City and stayed at the Mc House for three weeks - that is how long it took to go through a series of 5 casts. At that point he had the tenotomy people on here mention - it was a very minor thing done in about three minutes at the office with only local numbing on the heel area. My dh stayed in and watched. Then we came home with that last casts on and Everett wore those for an additional 3 weeks while his heel healed. Then we went in to the DBB. > > It was that simple. I " home schooled " my older child from the RMD house so he wouldn't get behind in his lessons at school. > > After the DBB begins, we go back to Iowa City every 3 months for a few visits, and now we go every 6 months or so for check ups only. We leave one day and come home the next day. > > I need to tell you about . He was born with clubfeet also, he's 6 years old now. He wore casts for 6 months and his doctor wanted to operate. He wanted to use Botox and all kinds of crap because frankly he wasn't getting any results. Why? Because he was a moron who had no business treating club feet. > > I was a moron too. I didn't question him. For all those months my baby went through hell. The casting was done wrong so it was all very painful. Not only that, but the doctor was doing more harm than good during those months. He was actually damaging 's clubfeet. After 6 months this doctor said " Well lets try physical therapy. " So endured about 18 months of physical therapy and AFO braces and meanwhile his feet were all balled up and crooked as ever so he couldn't walk, he could only hobble and fall down and cry with pain cuz his feet hurt him and his back hurt from wrenching it trying to walk, from the black eyes he got falling against corners and tables and every thing else. He lived on Motrin and Tylanol. > > And ignorant stupid me, I thought this was the way club feet was supposed to be. I STILL didn't ask enough questions. At nearly 2 yrs. old the doctor decided to operate. I had a very bad gut feeling about it. I didn't know much how to use the internet at that time but I muddled through an found this board only 2 months after it had been formed. They convinced me to send photos of to Dr. Ponseti. I did. > > Ponseti called me on the phone at home and said, " I need to see him as soon as possible, don't wait, just come - you find a way here and I'll see him when you get here. " > > No appointment, nothing, just COME NOW. So the board here told me about Angel Flights, I called them. In a week after talking to Dr. Ponseti my baby and I were on board this little plane flying to Iowa. > > It took a lot of doing, from Feburary to September of the year 2000, several Angel Flight trips back and forth, lots of time at the Mc House, but by the time Dr. Ponseti was finished, my son could run....remember he couldnt' even walk when we started. > > His feet will never be good - they suffered too much damage prior to finding the right doctor, but what Ponseti did was a lot of casting adjustments leading up to the ATTT operation which is a very MINIMAL procedure of taking one tendon and re-anchoring it in a new place. That's it. No bones were cut or broken, etc. like many surgeries do. > > I understand your child has a bone-alignment problem which is more complicated, but PLEASE consider talking to Dr. Ponseti about all this first. He is the Master of club feet in babies. He is SO good, he is so kind, so sweet, so generous. He doesn't let a baby cry. If the baby cries he stops work till the baby is happy. For 50 odd years he has devoted himself to club feet babies and I'm betting he's seen a case like yours before and may have insite. He at least has the experience your current doctor can't have by sheer time and devotion to one area of science. > > The Mcdonald houses charge a minor fee, but if you can't pay, they don't force you to. There is food there, free laundry, soap, shampoo, toilet paper, you name it. > > Shriners has a few Ponseti qualified doctors and they provide transportation and perhaps housing, I'm not sure. You may have to travel a long distance for this, but that's OK. > > If we on this board did not believe so strongly in the work of Dr. Ponseti we wouldn't be here day after day giving our testimony - it's the only way I really have to give back and make a silver lining around 's poor dark cloud of bad medical care years ago and some of the problems he still has today from it. > > What they say is true - if you do surgery now it cannot be reversed. Give it time - explore your options, keep an open mind. Your baby only has two feet and has to spend the rest of his life standing on those feet. Go put pebbles in your shoes today and spend the day walking on sore feet - like a pair of shoes your child will never ever be able to remove - to get an idea of what it'll be like to live on sore feet the rest of your entire life. > > If we didn't love you and didn't care we wouldn't bother spending our time here today. I owe both my son's ability to walk to Dr. Ponseti. > > s. > number23@c... I have tears in my eyes after reading your story. Thanks so much for taking the time to share it. My son's feet were put in casts, but the doctor did not use the Ponseti method. As I read more about the Ponseti method I think that's what he was trying to do, but wasn't doing it correctly. We had about 7 casts, then he put the shoes on him, but with no bar. Then he put him back in casts and at six months took x-rays. He referred us to another doctor with more experience, who I think may actually do the Ponseti method, but he suggested surgery. Now I'm wondering if he thought my son had had the Ponseti method and it didn't work, whereas my son never actually had the Ponseti method. I'm tempted to call him and ask him if he does the Ponseti method and see if he'll give my son a chance with that before he does the surgery. However, I'm afraid he may not do it right either. From reading all the responses to my posts it seems finding a qualified doctor is the most important thing. I'm still waiting to hear from Dr. Ponseti about a recommendation. I'm willing to go to Iowa if I have to, but if I can see someone closer that would be better. I have another child and it's hard for me to be away for long periods of time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Thanks for sharing your story. It really gives parents conviction to begin with the Ponseti Method and never look back. I'm glad I didn't give up, I came close out of sheer exhaustion. I'm terrible sorry to hear about . Don't beat yourself up though, you didn't know. How could you? You did the best you could have done. What I don't understand, why is a procedure that's so successful, so difficult to obtain. Why arn't more doctors on the band wagon? When I've talked to doctors about it in the NICU, I felt like it was taboo. Another doctor pushing a French method. It's so irritating. I feel like screaming from the top of my lungs - WHY THE HELL DON'T YOU KNOW ABOUT IT!!!! Anyway, just had to vent for a minute but I just don't understand.. I feel like printing out your story and passing it around the hospital. Thanks again for sharing. jennifer onemorebb tristan2@...> wrote: > OK first of all let me say we're not trying to gang up on you or beat you up - your child is your child, your decison is your's to make and we respect that. > > With that said however, I have to say the rest of this, and while it may end up lengthy, please stay with me: > > I live in mid-eastern Oklahoma. We drove to Iowa City, Iowa to have our infant treated by Dr. Ponseti. That's a 10 t0 12 hour drive one-way depending on traffic and how well the kids travel that particular day. We load a cooler full of cheap pops and lunch meat then hit the road. All we buy is gas. > > Everett is my 11 month old son. We took him to Iowa City and stayed at the Mc House for three weeks - that is how long it took to go through a series of 5 casts. At that point he had the tenotomy people on here mention - it was a very minor thing done in about three minutes at the office with only local numbing on the heel area. My dh stayed in and watched. Then we came home with that last casts on and Everett wore those for an additional 3 weeks while his heel healed. Then we went in to the DBB. > > It was that simple. I " home schooled " my older child from the RMD house so he wouldn't get behind in his lessons at school. > > After the DBB begins, we go back to Iowa City every 3 months for a few visits, and now we go every 6 months or so for check ups only. We leave one day and come home the next day. > > I need to tell you about . He was born with clubfeet also, he's 6 years old now. He wore casts for 6 months and his doctor wanted to operate. He wanted to use Botox and all kinds of crap because frankly he wasn't getting any results. Why? Because he was a moron who had no business treating club feet. > > I was a moron too. I didn't question him. For all those months my baby went through hell. The casting was done wrong so it was all very painful. Not only that, but the doctor was doing more harm than good during those months. He was actually damaging 's clubfeet. After 6 months this doctor said " Well lets try physical therapy. " So endured about 18 months of physical therapy and AFO braces and meanwhile his feet were all balled up and crooked as ever so he couldn't walk, he could only hobble and fall down and cry with pain cuz his feet hurt him and his back hurt from wrenching it trying to walk, from the black eyes he got falling against corners and tables and every thing else. He lived on Motrin and Tylanol. > > And ignorant stupid me, I thought this was the way club feet was supposed to be. I STILL didn't ask enough questions. At nearly 2 yrs. old the doctor decided to operate. I had a very bad gut feeling about it. I didn't know much how to use the internet at that time but I muddled through an found this board only 2 months after it had been formed. They convinced me to send photos of to Dr. Ponseti. I did. > > Ponseti called me on the phone at home and said, " I need to see him as soon as possible, don't wait, just come - you find a way here and I'll see him when you get here. " > > No appointment, nothing, just COME NOW. So the board here told me about Angel Flights, I called them. In a week after talking to Dr. Ponseti my baby and I were on board this little plane flying to Iowa. > > It took a lot of doing, from Feburary to September of the year 2000, several Angel Flight trips back and forth, lots of time at the Mc House, but by the time Dr. Ponseti was finished, my son could run....remember he couldnt' even walk when we started. > > His feet will never be good - they suffered too much damage prior to finding the right doctor, but what Ponseti did was a lot of casting adjustments leading up to the ATTT operation which is a very MINIMAL procedure of taking one tendon and re-anchoring it in a new place. That's it. No bones were cut or broken, etc. like many surgeries do. > > I understand your child has a bone-alignment problem which is more complicated, but PLEASE consider talking to Dr. Ponseti about all this first. He is the Master of club feet in babies. He is SO good, he is so kind, so sweet, so generous. He doesn't let a baby cry. If the baby cries he stops work till the baby is happy. For 50 odd years he has devoted himself to club feet babies and I'm betting he's seen a case like yours before and may have insite. He at least has the experience your current doctor can't have by sheer time and devotion to one area of science. > > The Mcdonald houses charge a minor fee, but if you can't pay, they don't force you to. There is food there, free laundry, soap, shampoo, toilet paper, you name it. > > Shriners has a few Ponseti qualified doctors and they provide transportation and perhaps housing, I'm not sure. You may have to travel a long distance for this, but that's OK. > > If we on this board did not believe so strongly in the work of Dr. Ponseti we wouldn't be here day after day giving our testimony - it's the only way I really have to give back and make a silver lining around 's poor dark cloud of bad medical care years ago and some of the problems he still has today from it. > > What they say is true - if you do surgery now it cannot be reversed. Give it time - explore your options, keep an open mind. Your baby only has two feet and has to spend the rest of his life standing on those feet. Go put pebbles in your shoes today and spend the day walking on sore feet - like a pair of shoes your child will never ever be able to remove - to get an idea of what it'll be like to live on sore feet the rest of your entire life. > > If we didn't love you and didn't care we wouldn't bother spending our time here today. I owe both my son's ability to walk to Dr. Ponseti. > > s. > number23@c... I have tears in my eyes after reading your story. Thanks so much for taking the time to share it. My son's feet were put in casts, but the doctor did not use the Ponseti method. As I read more about the Ponseti method I think that's what he was trying to do, but wasn't doing it correctly. We had about 7 casts, then he put the shoes on him, but with no bar. Then he put him back in casts and at six months took x-rays. He referred us to another doctor with more experience, who I think may actually do the Ponseti method, but he suggested surgery. Now I'm wondering if he thought my son had had the Ponseti method and it didn't work, whereas my son never actually had the Ponseti method. I'm tempted to call him and ask him if he does the Ponseti method and see if he'll give my son a chance with that before he does the surgery. However, I'm afraid he may not do it right either. From reading all the responses to my posts it seems finding a qualified doctor is the most important thing. I'm still waiting to hear from Dr. Ponseti about a recommendation. I'm willing to go to Iowa if I have to, but if I can see someone closer that would be better. I have another child and it's hard for me to be away for long periods of time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Thanks for sharing your story. It really gives parents conviction to begin with the Ponseti Method and never look back. I'm glad I didn't give up, I came close out of sheer exhaustion. I'm terrible sorry to hear about . Don't beat yourself up though, you didn't know. How could you? You did the best you could have done. What I don't understand, why is a procedure that's so successful, so difficult to obtain. Why arn't more doctors on the band wagon? When I've talked to doctors about it in the NICU, I felt like it was taboo. Another doctor pushing a French method. It's so irritating. I feel like screaming from the top of my lungs - WHY THE HELL DON'T YOU KNOW ABOUT IT!!!! Anyway, just had to vent for a minute but I just don't understand.. I feel like printing out your story and passing it around the hospital. Thanks again for sharing. jennifer onemorebb tristan2@...> wrote: > OK first of all let me say we're not trying to gang up on you or beat you up - your child is your child, your decison is your's to make and we respect that. > > With that said however, I have to say the rest of this, and while it may end up lengthy, please stay with me: > > I live in mid-eastern Oklahoma. We drove to Iowa City, Iowa to have our infant treated by Dr. Ponseti. That's a 10 t0 12 hour drive one-way depending on traffic and how well the kids travel that particular day. We load a cooler full of cheap pops and lunch meat then hit the road. All we buy is gas. > > Everett is my 11 month old son. We took him to Iowa City and stayed at the Mc House for three weeks - that is how long it took to go through a series of 5 casts. At that point he had the tenotomy people on here mention - it was a very minor thing done in about three minutes at the office with only local numbing on the heel area. My dh stayed in and watched. Then we came home with that last casts on and Everett wore those for an additional 3 weeks while his heel healed. Then we went in to the DBB. > > It was that simple. I " home schooled " my older child from the RMD house so he wouldn't get behind in his lessons at school. > > After the DBB begins, we go back to Iowa City every 3 months for a few visits, and now we go every 6 months or so for check ups only. We leave one day and come home the next day. > > I need to tell you about . He was born with clubfeet also, he's 6 years old now. He wore casts for 6 months and his doctor wanted to operate. He wanted to use Botox and all kinds of crap because frankly he wasn't getting any results. Why? Because he was a moron who had no business treating club feet. > > I was a moron too. I didn't question him. For all those months my baby went through hell. The casting was done wrong so it was all very painful. Not only that, but the doctor was doing more harm than good during those months. He was actually damaging 's clubfeet. After 6 months this doctor said " Well lets try physical therapy. " So endured about 18 months of physical therapy and AFO braces and meanwhile his feet were all balled up and crooked as ever so he couldn't walk, he could only hobble and fall down and cry with pain cuz his feet hurt him and his back hurt from wrenching it trying to walk, from the black eyes he got falling against corners and tables and every thing else. He lived on Motrin and Tylanol. > > And ignorant stupid me, I thought this was the way club feet was supposed to be. I STILL didn't ask enough questions. At nearly 2 yrs. old the doctor decided to operate. I had a very bad gut feeling about it. I didn't know much how to use the internet at that time but I muddled through an found this board only 2 months after it had been formed. They convinced me to send photos of to Dr. Ponseti. I did. > > Ponseti called me on the phone at home and said, " I need to see him as soon as possible, don't wait, just come - you find a way here and I'll see him when you get here. " > > No appointment, nothing, just COME NOW. So the board here told me about Angel Flights, I called them. In a week after talking to Dr. Ponseti my baby and I were on board this little plane flying to Iowa. > > It took a lot of doing, from Feburary to September of the year 2000, several Angel Flight trips back and forth, lots of time at the Mc House, but by the time Dr. Ponseti was finished, my son could run....remember he couldnt' even walk when we started. > > His feet will never be good - they suffered too much damage prior to finding the right doctor, but what Ponseti did was a lot of casting adjustments leading up to the ATTT operation which is a very MINIMAL procedure of taking one tendon and re-anchoring it in a new place. That's it. No bones were cut or broken, etc. like many surgeries do. > > I understand your child has a bone-alignment problem which is more complicated, but PLEASE consider talking to Dr. Ponseti about all this first. He is the Master of club feet in babies. He is SO good, he is so kind, so sweet, so generous. He doesn't let a baby cry. If the baby cries he stops work till the baby is happy. For 50 odd years he has devoted himself to club feet babies and I'm betting he's seen a case like yours before and may have insite. He at least has the experience your current doctor can't have by sheer time and devotion to one area of science. > > The Mcdonald houses charge a minor fee, but if you can't pay, they don't force you to. There is food there, free laundry, soap, shampoo, toilet paper, you name it. > > Shriners has a few Ponseti qualified doctors and they provide transportation and perhaps housing, I'm not sure. You may have to travel a long distance for this, but that's OK. > > If we on this board did not believe so strongly in the work of Dr. Ponseti we wouldn't be here day after day giving our testimony - it's the only way I really have to give back and make a silver lining around 's poor dark cloud of bad medical care years ago and some of the problems he still has today from it. > > What they say is true - if you do surgery now it cannot be reversed. Give it time - explore your options, keep an open mind. Your baby only has two feet and has to spend the rest of his life standing on those feet. Go put pebbles in your shoes today and spend the day walking on sore feet - like a pair of shoes your child will never ever be able to remove - to get an idea of what it'll be like to live on sore feet the rest of your entire life. > > If we didn't love you and didn't care we wouldn't bother spending our time here today. I owe both my son's ability to walk to Dr. Ponseti. > > s. > number23@c... I have tears in my eyes after reading your story. Thanks so much for taking the time to share it. My son's feet were put in casts, but the doctor did not use the Ponseti method. As I read more about the Ponseti method I think that's what he was trying to do, but wasn't doing it correctly. We had about 7 casts, then he put the shoes on him, but with no bar. Then he put him back in casts and at six months took x-rays. He referred us to another doctor with more experience, who I think may actually do the Ponseti method, but he suggested surgery. Now I'm wondering if he thought my son had had the Ponseti method and it didn't work, whereas my son never actually had the Ponseti method. I'm tempted to call him and ask him if he does the Ponseti method and see if he'll give my son a chance with that before he does the surgery. However, I'm afraid he may not do it right either. From reading all the responses to my posts it seems finding a qualified doctor is the most important thing. I'm still waiting to hear from Dr. Ponseti about a recommendation. I'm willing to go to Iowa if I have to, but if I can see someone closer that would be better. I have another child and it's hard for me to be away for long periods of time. Quote Link to comment Share on other sites More sharing options...
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