Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 Anybody out there with positional clubfoot knowledge? My friend from college who gave birth at 25 1/2 weeks to a beautiful little girl has been diagnosed with a positional clubfoot-her left foot. Since she has come home from the hospital(in late Feb), her daughter was seen by a ped orthopedist. He confirmed that it was positional only(background- the reason for the early birth, my friend has only half a uterus-so Madi ran out of space). She was taught and is doing some stretching and massage and it seems to help. I just want to assist her as much as possible. She is based in Pottsville, PA but I would think she would be willing to go anywhere if Madi's care needed it. Madi is still on oxygen so this part of her life is on the backburner. If anyone has any advice or history of positional clubfeet/foot, I would be most appreciative! thanks, kathleen mom to david bcf fab 12/7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 Hi Kathleen, From what I remember Dr. Pirani telling me about positional, it's rare rare rare, almost never happens. School of thought years ago was that postional was common, this before the genetic factors of cf were widely known and accepted. I would think that if someone had only half a uterus for baby then it would be possible. Have you seen her feet? I have heard that really mild cases of positional cf will correct of their own. I would still urge your friend to see a Ponseti doctor though - to confirm the positional diagnosis. Hope her little girl is doing ok, why is she still on oxygen? & Grace > > Anybody out there with positional clubfoot knowledge? My friend from > college who gave birth at 25 1/2 weeks to a beautiful little girl has > been diagnosed with a positional clubfoot-her left foot. Since she has > come home from the hospital(in late Feb), her daughter was seen by a > ped orthopedist. He confirmed that it was positional only (background- > the reason for the early birth, my friend has only half a uterus-so > Madi ran out of space). She was taught and is doing some stretching > and massage and it seems to help. I just want to assist her as much as > possible. She is based in Pottsville, PA but I would think she would > be willing to go anywhere if Madi's care needed it. Madi is still on > oxygen so this part of her life is on the backburner. If anyone has > any advice or history of positional clubfeet/foot, I would be most > appreciative! > thanks, > kathleen > mom to david bcf fab 12/7 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 " Positional " CF is not always positional. In my case- my water broke when I was at only 30 weeks. I was kept on hospital bed rest for the next four weeks. When I delivered my daughter at 34 weeks we were relieved that she was very healthy in all ways, but had club feet. I was told by a whole slew of Drs. that my lack of amniotic fluid caused her to have positional CF. I now know better. I had my daughter treated by a MD who practiced a " Ponseti-like " style of CF tx. After much frustration and wasted time, money, and effort we found Dr. Dobb's in St Louis. I now believe my daughter's CF was genetic. Dr. Dobb's corrected my daughters feet with ease. I wish we knew then what we know now! No matter how Madi ended up with CF, just make sure she gets the best care from day one! Good Luck to you and your friends, Jen Addie 1/18/02 Dobbs Brace 16/7 > > > > Anybody out there with positional clubfoot knowledge? My friend > from > > college who gave birth at 25 1/2 weeks to a beautiful little girl > has > > been diagnosed with a positional clubfoot-her left foot. Since she > has > > come home from the hospital(in late Feb), her daughter was seen by > a > > ped orthopedist. He confirmed that it was positional only > (background- > > the reason for the early birth, my friend has only half a uterus- so > > Madi ran out of space). She was taught and is doing some stretching > > and massage and it seems to help. I just want to assist her as much > as > > possible. She is based in Pottsville, PA but I would think she > would > > be willing to go anywhere if Madi's care needed it. Madi is still > on > > oxygen so this part of her life is on the backburner. If anyone has > > any advice or history of positional clubfeet/foot, I would be most > > appreciative! > > thanks, > > kathleen > > mom to david bcf fab 12/7 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 Here it is as I have learned and experienced. There is such a thing as a foot which comes out in the " position " of a clubfoot and it is truley from the " position " the foot was resting in the womb. These feet can be brought to full correction to match the other foot (as these are usually uni-lateral ie. one sided). We did do stretching and sometimes casting to make families feel cared for. These feet are very supple and they will correct on their own, much like the head or ear that may have taken a shape (position) from long term pressure in utero. The theory of Clubfoot being a " packaging " defect is a huge giggle to me, If this were so why are their NOT more multiples born with CF and why are preemies born with CF? There are feet that become CF but this is only in the case of Neuro muscular progressive spastic diseases like CP or head injury etc. Beth > > Anybody out there with positional clubfoot knowledge? My friend from > college who gave birth at 25 1/2 weeks to a beautiful little girl has > been diagnosed with a positional clubfoot-her left foot. Since she has > come home from the hospital(in late Feb), her daughter was seen by a > ped orthopedist. He confirmed that it was positional only (background- > the reason for the early birth, my friend has only half a uterus-so > Madi ran out of space). She was taught and is doing some stretching > and massage and it seems to help. I just want to assist her as much as > possible. She is based in Pottsville, PA but I would think she would > be willing to go anywhere if Madi's care needed it. Madi is still on > oxygen so this part of her life is on the backburner. If anyone has > any advice or history of positional clubfeet/foot, I would be most > appreciative! > thanks, > kathleen > mom to david bcf fab 12/7 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 Beth, So how many of these supple feet that aren't positional have you seen that weren't clubfoot and how to tell for sure? We were told positional from the beginning, 4 days in hospital... including one visit from my children's personal ped (faculty there) who I didn't even show her feet to (because I'd been told it wasn't an issue and felt he didn't need to be bothered with the same question I'd asked the residents so many times, doh!) and then when we were to be released, his colleague was called in to examine her and he wanted a second opinion. When the ped ortho saw her, he confirmed it was a true clubfoot and showed me the creases that he said confirmed it. I could easily (with very little pressure) push her foot into a neutral position and have pictures of me doing so. I am unsure about dorsiflexion (didn't know to look for that at the time) but during casting, till the end they weren't sure if she's need the tenotomy or not (although the chances weren't high he said). So while I'm certain her foot is a true clubfoot (have seen her x-rays, some of her clubfoot's bones are not in the exact same places as her non-affected foot that's for sure) she showed the signs that you describe here. Creases... were her diagnosis criteria apparently. She was casted 5 times total including the last cast which was left on for just over two weeks. I would assume that a positional CF that was treated with casting would have responded a bit sooner than that although Dr. Ponseti originally told me that she'd need 3-4 casts after seeing her pictures. Thoughts? Kori At 12:47 PM 3/18/2006, you wrote: >Here it is as I have learned and experienced. There is such a thing >as a foot which comes out in the " position " of a clubfoot and it is >truley from the " position " the foot was resting in the womb. These >feet can be brought to full correction to match the other foot (as >these are usually uni-lateral ie. one sided). We did do stretching >and sometimes casting to make families feel cared for. These feet are >very supple and they will correct on their own, much like the head or >ear that may have taken a shape (position) from long term pressure in >utero. >The theory of Clubfoot being a " packaging " defect is a huge giggle to >me, If this were so why are their NOT more multiples born with CF and >why are preemies born with CF? >There are feet that become CF but this is only in the case of Neuro >muscular progressive spastic diseases like CP or head injury etc. > >Beth > > > > > > > Anybody out there with positional clubfoot knowledge? My friend >from > > college who gave birth at 25 1/2 weeks to a beautiful little girl >has > > been diagnosed with a positional clubfoot-her left foot. Since she >has > > come home from the hospital(in late Feb), her daughter was seen by >a > > ped orthopedist. He confirmed that it was positional only >(background- > > the reason for the early birth, my friend has only half a uterus-so > > Madi ran out of space). She was taught and is doing some stretching > > and massage and it seems to help. I just want to assist her as much >as > > possible. She is based in Pottsville, PA but I would think she >would > > be willing to go anywhere if Madi's care needed it. Madi is still >on > > oxygen so this part of her life is on the backburner. If anyone has > > any advice or history of positional clubfeet/foot, I would be most > > appreciative! > > thanks, > > kathleen > > mom to david bcf fab 12/7 > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 In the 16 years I would say over 2 dozen or more and these are truley positional and definatly a concern to parents when they have a baby whose foot looks so wrong at birth. They come to really have a Dr. who is familier enough with clubfeet to help them understand the difference. As far as how many came in with a diagnosis of positional and are true clubfeet, too many to remember as those would be the feet we would call very mild clubfoot. The criteria is clinical, the foot really looks like a normal foot and is able to fully ranged with no stiffness. You know how extremly flexible a newborns feet are, And you are correct the apperance is very " normal " no strange creases or size difference. On the other hand we get the babies that come in with a diagnosis of clubfeet and have some other problem ie forefoot aductus, vertical talus etc. We have also seen the babies at an older age, one I remember very well, was a 9 month old whos pediatrician was saying he did not have clubfeet and that he would " grow out of it " and he really had clubfeet. This parent heard this from another " proffesional " as well, Mom was so sure something was wrong and streched and streched and finally came to us and the Ponseti method took care of the feet in 2 1/2 mo. There needs to be more education to pediatricians I guess. Seems they should know about this as it is the most common idiopathic congenital defformity DUH! > > > > > > Anybody out there with positional clubfoot knowledge? My friend > >from > > > college who gave birth at 25 1/2 weeks to a beautiful little girl > >has > > > been diagnosed with a positional clubfoot-her left foot. Since she > >has > > > come home from the hospital(in late Feb), her daughter was seen by > >a > > > ped orthopedist. He confirmed that it was positional only > >(background- > > > the reason for the early birth, my friend has only half a uterus-so > > > Madi ran out of space). She was taught and is doing some stretching > > > and massage and it seems to help. I just want to assist her as much > >as > > > possible. She is based in Pottsville, PA but I would think she > >would > > > be willing to go anywhere if Madi's care needed it. Madi is still > >on > > > oxygen so this part of her life is on the backburner. If anyone has > > > any advice or history of positional clubfeet/foot, I would be most > > > appreciative! > > > thanks, > > > kathleen > > > mom to david bcf fab 12/7 > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 So it's normal for some of the bones in the cf to be a bit different than the non-cf? I've noticed that Janna's cf has some bones on the top of the foot that stick up a bit more than the other foot. She also has red spots/beginning pressure sores on these bones. Can't figure out how to get rid of the spots/sores (not open sores, just red). We got her the 's and that's when it started - though I don't know how the heck a kid could get sores in those, they are so stinkin' soft! Tried putting her back in her old markell's and the spots are still there. I've got one of those blister healer thingys on the area. I don't know - just so over dealing with the stupid spica and the foot bracing crap. It's getting old. Oh, and we never got a diagnosis either way as far as positional/true cf. Though it's so weird the way her foot was perfectly formed to fit up against her other leg and it looked like it was supposed to be that way, even though it was a cf. I'll attach a picture, first one is hours after birth, second is 7 days old. It LOOKS positional...sorry to sabatoge your post with no insight for you....just made me think of a couple of things Re: Re: positional clubfoot? Beth, So how many of these supple feet that aren't positional have you seen that weren't clubfoot and how to tell for sure? We were told positional from the beginning, 4 days in hospital... including one visit from my children's personal ped (faculty there) who I didn't even show her feet to (because I'd been told it wasn't an issue and felt he didn't need to be bothered with the same question I'd asked the residents so many times, doh!) and then when we were to be released, his colleague was called in to examine her and he wanted a second opinion. When the ped ortho saw her, he confirmed it was a true clubfoot and showed me the creases that he said confirmed it. I could easily (with very little pressure) push her foot into a neutral position and have pictures of me doing so. I am unsure about dorsiflexion (didn't know to look for that at the time) but during casting, till the end they weren't sure if she's need the tenotomy or not (although the chances weren't high he said). So while I'm certain her foot is a true clubfoot (have seen her x-rays, some of her clubfoot's bones are not in the exact same places as her non-affected foot that's for sure) she showed the signs that you describe here. Creases... were her diagnosis criteria apparently. She was casted 5 times total including the last cast which was left on for just over two weeks. I would assume that a positional CF that was treated with casting would have responded a bit sooner than that although Dr. Ponseti originally told me that she'd need 3-4 casts after seeing her pictures. Thoughts? Kori At 12:47 PM 3/18/2006, you wrote: >Here it is as I have learned and experienced. There is such a thing >as a foot which comes out in the " position " of a clubfoot and it is >truley from the " position " the foot was resting in the womb. These >feet can be brought to full correction to match the other foot (as >these are usually uni-lateral ie. one sided). We did do stretching >and sometimes casting to make families feel cared for. These feet are >very supple and they will correct on their own, much like the head or >ear that may have taken a shape (position) from long term pressure in >utero. >The theory of Clubfoot being a " packaging " defect is a huge giggle to >me, If this were so why are their NOT more multiples born with CF and >why are preemies born with CF? >There are feet that become CF but this is only in the case of Neuro >muscular progressive spastic diseases like CP or head injury etc. > >Beth > > > > > > > Anybody out there with positional clubfoot knowledge? My friend >from > > college who gave birth at 25 1/2 weeks to a beautiful little girl >has > > been diagnosed with a positional clubfoot-her left foot. Since she >has > > come home from the hospital(in late Feb), her daughter was seen by >a > > ped orthopedist. He confirmed that it was positional only >(background- > > the reason for the early birth, my friend has only half a uterus-so > > Madi ran out of space). She was taught and is doing some stretching > > and massage and it seems to help. I just want to assist her as much >as > > possible. She is based in Pottsville, PA but I would think she >would > > be willing to go anywhere if Madi's care needed it. Madi is still >on > > oxygen so this part of her life is on the backburner. If anyone has > > any advice or history of positional clubfeet/foot, I would be most > > appreciative! > > thanks, > > kathleen > > mom to david bcf fab 12/7 > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 Madison is doing well and has been home for almost a month now! She is on oxygen because she has tiny episodes-she works so hard to eat/swallow that she will sometimes forget to breathe. These episodes were pretty frequent at first however now they are happening 2 or 3 times a day. They hope with the next checkup that she will be off oxygen(next week). I will send picts to the cfpics group site and get your guys opinion! thanks, kathleen > > > > Anybody out there with positional clubfoot knowledge? My friend > from > > college who gave birth at 25 1/2 weeks to a beautiful little girl > has > > been diagnosed with a positional clubfoot-her left foot. Since she > has > > come home from the hospital(in late Feb), her daughter was seen by > a > > ped orthopedist. He confirmed that it was positional only > (background- > > the reason for the early birth, my friend has only half a uterus- so > > Madi ran out of space). She was taught and is doing some stretching > > and massage and it seems to help. I just want to assist her as much > as > > possible. She is based in Pottsville, PA but I would think she > would > > be willing to go anywhere if Madi's care needed it. Madi is still > on > > oxygen so this part of her life is on the backburner. If anyone has > > any advice or history of positional clubfeet/foot, I would be most > > appreciative! > > thanks, > > kathleen > > mom to david bcf fab 12/7 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 Thanks Beth! The doctor did mention that casting would be an option but for the time being, he is taking a wait and see approach. When she was first born, her foot was pretty flexible and hence the positional diagnosis. Since she has had many more problems, the clubfoot has taken a back burner. I am going to send pict to cfpics so you all can see her little foot. Her mom is doing stretches and massage right now and is getting reevaluated in a week. Thanks, kathleen > > > > Anybody out there with positional clubfoot knowledge? My friend > from > > college who gave birth at 25 1/2 weeks to a beautiful little girl > has > > been diagnosed with a positional clubfoot-her left foot. Since she > has > > come home from the hospital(in late Feb), her daughter was seen by > a > > ped orthopedist. He confirmed that it was positional only > (background- > > the reason for the early birth, my friend has only half a uterus- so > > Madi ran out of space). She was taught and is doing some stretching > > and massage and it seems to help. I just want to assist her as much > as > > possible. She is based in Pottsville, PA but I would think she > would > > be willing to go anywhere if Madi's care needed it. Madi is still > on > > oxygen so this part of her life is on the backburner. If anyone has > > any advice or history of positional clubfeet/foot, I would be most > > appreciative! > > thanks, > > kathleen > > mom to david bcf fab 12/7 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 Wow, that must be scary!! Good to hear that she is doing better! One of my friends had a preemie and dealt with all kinds of stuff with her little guy (including lung development/breathing issues) who is a healthy happy 9 yr old now I am happy to say. Is your friend planning to take Madison to see a Ponseti doctor? I would encourage it so that she gets the best care possible. & Grace > > > > > > Anybody out there with positional clubfoot knowledge? My friend > > from > > > college who gave birth at 25 1/2 weeks to a beautiful little > girl > > has > > > been diagnosed with a positional clubfoot-her left foot. Since > she > > has > > > come home from the hospital(in late Feb), her daughter was seen > by > > a > > > ped orthopedist. He confirmed that it was positional only > > (background- > > > the reason for the early birth, my friend has only half a uterus- > so > > > Madi ran out of space). She was taught and is doing some > stretching > > > and massage and it seems to help. I just want to assist her as > much > > as > > > possible. She is based in Pottsville, PA but I would think she > > would > > > be willing to go anywhere if Madi's care needed it. Madi is > still > > on > > > oxygen so this part of her life is on the backburner. If anyone > has > > > any advice or history of positional clubfeet/foot, I would be > most > > > appreciative! > > > thanks, > > > kathleen > > > mom to david bcf fab 12/7 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 Hi - some anecdotes from me but I agree with those who recommend consulting a professional as soon as physically possible... my friend's daughter had positional clubfoot which she successfully massaged out during the first 3mths. My aunt had positional too (50yrs ago?!) which was corrected after her foot was bandaged for a couple of weeks when she was new born. My son has right foot structural and left foot positional - the left foot is being corrected by default through the Ponseti treatment for his right. Your friend and her daughter are having a tough time, they are lucky to have your support! > > > Anybody out there with positional clubfoot knowledge? Quote Link to comment Share on other sites More sharing options...
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