Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 I definitely would go back and ask for a referral. Best of all, I would go to a Ponseti doctor to see what he/she says. His feet should not be hurting like that. carseatmommy wrote: Maybe someone here can help. Brief summary - My youngest son was born 10/5/02 with mild bilateral clubfoot. Treated for about 9 months with PT and Wheaton Bracesand shortly after his first birthday his PT said she only needed to see him for annual checks. At his 2 year well child, his pedi examined his feet and said he didn't see the need for the PT evals (and therefore wouldn't write the Rx needed for insurance to pay for the eval). ANYWAY - fast forward to now - 3 years 5 months old. He walks with a slight limp (always has, always will according to his PT) Doesn't slow him down. But nights have become horrible for both of us - he'll wake at least once a night kicking his feet against the end of his bed and fussing " my feets my feets " when I ask what's wrong. Growing pains? Regression? Should I see his pedi and request a PT eval even though the pedi doesn't think he needs it? Thanks in advance for any insight! Teri, mommy to 10/5/02 bcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 Hi, Teri & - A few questions...are you taking to an orthopaedic surgeon for follow ups on his clubfoot? Did you ever see a surgeon or was his entire treatment under the care of a pediatrician and physical therapist? A pediatrician, in my mind, is not qualified to make the decision about when a child does or does not need to have their clubfoot monitored. There is a chance of regression up until the age of 11, though the odds are highest up until age 5 or 6. I don't understand why he would need to walk with a limp. Is there some other condition that he has that does not allow him to walk normally? A child with a fully corrected clubfoot (with no other conditions) should be able to walk with a normal gait. Did your p.t. tell you what causes the limp? Is it that he's in pain or that some aspect of his foot causes this? I would suggest that you get him in to see an orthopaedic surgeon to have his feet evaluated, not a physical therapist. If you tell us what region you live in, we can certainly make recommendations for doctors in your area to look into. If you're in the U.S., would you be able to take your son to Iowa City to see Dr. Ponseti? It is very possible that he's regressing and that the activity is making his feet sore at night. Does this happen every night regardless, or does it happen on nights when he's been particularly active during the day? What kind of dorsiflexion does he have (how far can you push his foot up past neutral toward his shin)? Does he in-toe at all? If you'd like, you can send us digital pictures of his feet if you join the yahoo group CFPics and we can tell you if we see anything unusual. Hopefully we can help you get your son into good hands and sleeping soundly at night with no concerns at all about his feet! Hang in there! & (3-16-00, left clubfoot) > > Maybe someone here can help. > > Brief summary - My youngest son was born 10/5/02 with mild bilateral > clubfoot. Treated for about 9 months with PT and Wheaton Bracesand > shortly after his first birthday his PT said she only needed to see > him for annual checks. > > At his 2 year well child, his pedi examined his feet and said he > didn't see the need for the PT evals (and therefore wouldn't write > the Rx needed for insurance to pay for the eval). > > ANYWAY - fast forward to now - 3 years 5 months old. He walks with a > slight limp (always has, always will according to his PT) Doesn't > slow him down. > > But nights have become horrible for both of us - he'll wake at least > once a night kicking his feet against the end of his bed and > fussing " my feets my feets " when I ask what's wrong. > > Growing pains? Regression? Should I see his pedi and request a PT > eval even though the pedi doesn't think he needs it? > > Thanks in advance for any insight! > > Teri, mommy to 10/5/02 bcf > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 At 08:52 AM 3/9/2006, you wrote: >Maybe someone here can help. Hi Teri, I think we can help, no... I know we can. However, the information you get here will likely go against all you've been told so far. Please know that anything said NEVER means you have done anything wrong and we know that you have done everything you could for your little boy. Now that you're here, you're in the best place for and we will do everything possible to help you find someone to help your son. Your pediatrician is in no way capable nor ever should have taken on treatment for this deformity. Pediatricians, unless trained in the Ponseti Method (I do not know of any who are actually) are not qualified to treat clubfoot or even evaluate it. Clubfoot should always be referred to an Orthopaedic Surgeon or a qualified Podiatrist trained specifically to correct clubfoot in children. I'm almost beyond myself wondering why the ped. did not refer you to an Ortho. but rather took it upon himself to prescribe treatment that apparently was not successful for your son and employed a treatment that has never shown to be either *standard* or successful for clubfoot. I find that very, very odd... Clubfeet corrected without surgery do not hurt. These children do not limp. There is no reason for them to. I really hate saying this, because it could be perceived as harsh criticism of you, mama (which it is sooooo NOT at all what I'm saying) but I feel it needs to be said so you understand the rest of what I'm going to say (and what the others will say too). >Brief summary - My youngest son was born 10/5/02 with mild bilateral >clubfoot. Treated for about 9 months with PT and Wheaton Bracesand >shortly after his first birthday his PT said she only needed to see >him for annual checks. I will address this treatment plan specifically. Clubfoot should be treated with specific manipulations and castings to gently, and swiftly bring the foot into a corrected position. It takes only 3-7 (9 at most) weekly castings to correct the feet. The last cast, which may or may not be a post tenotomy cast (the tenotomy is a small surgical procedure usually done in the physician's office under local anesthesia to *nick* the Achilles Tendon. This allows the tendon to regenerate and become long enough to allow the foot to dorsiflex enough for full range and flexion, functionality). PT is actually not part of this treatment although some parents have found it beneficial for various reasons. The mass majority of patients (children) have no PT at all even after correction. The fact that PT can help the foot look normal is great, and sure... it can work for some children. Obviously 's PT helped him. However as clubfoot is understood by the experts, relapse has a high chance of occurring in the first 5-6y and bracing is essential to maintaining a corrected foot. Without bracing past the first year the relapse rate is in the 80% range. In this respect, his PT and bracing should never have been discontinued. Additionally, the Wheaton Brace, even though used by many physicians to treat clubfoot and is marketed specifically for clubfoot is not the brace that works. Physicians who understand the non-surgical treatment of clubfoot properly do not use this brace. >At his 2 year well child, his pedi examined his feet and said he >didn't see the need for the PT evals (and therefore wouldn't write >the Rx needed for insurance to pay for the eval). This, in and of itself shows that this Dr. has little or no knowledge of the treatment for clubfoot. Exactly what is it to him if you continue PT with your child? Apologies in advance for being critical, yet again.... but he had no right to deny your son these evaluations. If the PT is the treating caregiver, the PT should be allowed to decide these things. >ANYWAY - fast forward to now - 3 years 5 months old. He walks with a >slight limp (always has, always will according to his PT) Doesn't >slow him down. Again, a limp is not normal nor should it be expected or tolerated. If the child limps, something is woefully wrong with the treatment. >But nights have become horrible for both of us - he'll wake at least >once a night kicking his feet against the end of his bed and >fussing " my feets my feets " when I ask what's wrong. oh that poor little one. My CF daughter is almost three and I have two older sons. This age... (any age!), nights should be peaceful and without pain. It breaks my heart to hear your son is having this experience. I hope you are able to use the information you will get here to help you and find a physician who is able to treat him so this stops. I'm sure it tears your heart out too when he says these things to you. I know we can help you find someone who can help him. >Growing pains? Regression? Should I see his pedi and request a PT >eval even though the pedi doesn't think he needs it? It sounds like you've got an HMO for insurance. So perhaps this will be difficult for you to do but it can be done. First, get a new ped. Find one who will refer your son to an Orthopaedic Surgeon who is trained in the Ponseti Method if that's what you need to do to get insurance to pay. You may have to make a ton of phone calls and emails to the ped's on your insurance list. You will find one though I'm sure. Find out who the qualified physicians (Ponseti Method) are in your area (Dr. is one I know of) and check with your insurance to see if they're covered. Then, find out from that physician, who in your insurance network they recommend you to see for your referral. now, with respect to what I would really recommend you do right now... I'm going to say something that will sound like an impossibility. So know that I realize this when you read it but also know that you are not alone in thinking this is impossible. Many others have heard this before, yet found the avenues to do it, and inexpensively. ok, deep breath... Go to Iowa City and see Dr. Ponseti. Hands down, before I even attempted to see any other physician I would do everything in my power to get to Iowa City and Dr. Ponseti ASAP. I say this much because of 's age, there is no one in the world more qualified to treat clubfoot in older children than Dr. Ponseti. I do not know a whole lot about Dr. 's success with older children, or if he's treated many but Dr. Ponseti has and can absolutely help your son. Dr. , from what I hear and see is a great Ponseti Doctor and not a bad second choice at all. But if it were my child... I'd go to Iowa for initial treatment and perhaps have Dr. follow up thereafter. We have resources for you to get free travel and very low cost rooming in Iowa. Others have gone before you, and much further who will help you with all the specifics. If you decide to do this, we can help you find a way. I so know this sounds crazy... to say drop everything and take you and your child (and other children if you have them - OMG what an idea... CRAZY!!!) to Iowa. Ya right you're thinking... yes, I know it sounds like I'm nuts or I have no idea what kind of leap that would be for you and your family. But you would not be the first to do it, and you won't be the last because in doing so, parents are giving their children the best chance at good feet or even perfect feet and it proves to be the best thing for the little ones out there. may simply need a cast or two to correct whatever is causing his pain and limp and bracing thereafter till about 5yo. That this will work for him is a very good possibility as they have been having significant success in Iowa treating even untreated clubfoot in older patients. 's feet aren't untreated, he's not walking on the top of his foot... he has a GREAT chance of getting through this and coming out with feet that do not hurt and are nicely corrected. Your situation is a little different than some parents who come here. Many come here after failed correction and being told surgery is the only answer. It sounds like you have little support from the medical professionals at all, they don't want to do anything to help you much less recommend surgery. In that respect, you might take comfort in knowing you haven't had that recommendation looming over you to make you crazy :~} If you would like, we do have parents who are adept at troubleshooting correction issues from viewing pictures and who could let you know how the foot *looks* and if a second opinion is warranted. From what you say however, I would have to say yes... a second opinion is warranted because his feet should not hurt and he should not limp. But if you would like, we can take a look at his feet (we even have a member who is trained in the Ponseti Method and has corrected many clubfeet herself, she is a Physician's Assistant who has trained with Dr. Ponseti and actually trains people to correct CF with this method, even Physicians) and let you know if they look like they're corrected. We cannot necessarily diagnose, but we do know a corrected foot from an uncorrected one and that may help you to understand why he's having these issues and what route you could follow hereafter. Here are the instructions for taking pictures of clubfeet for consultation. This is what Dr. Ponseti will ask for if you decide to email him for a consult. Oh, BTW... Dr. Ponseti will consult with you for free via email. Just email him with these pictures. That's all it takes. When sending pictures for consultation, this series shows the best views to determine if feet are properly corrected. For weight bearing views, hold your baby up and let them stand as flat on their feet as they naturally would. 1) From front with baby standing bearing weight. 2) From back (straight on) with babe standing bearing weight. 3) 1 each of both soles straight on. 4) 1 with you using your palm to push his forefoot as far up past " L " as possible from the side (profile). This shows dorsiflexion. UI Hospitals and Clinics Patient Education To Parents of Children Born with Clubfeet How to Contact Dr. Ponseti Ignacio Ponseti, M.D. Department of Orthopaedic Surgery, University of Iowa Hospitals and Clinics Peer Review Status: Internally Peer Reviewed ---------- Telephone: (319)356-3469 Address: University of Iowa Hospitals and Clinics 200 Hawkins Drive 010255 JPP Iowa City, IA 52242 Via E-mail: ignacio-ponseti@... The U of Iowa & Dr. Ponseti's Clubfoot website, with all the information you need... http://www.uihealthcare.com/topics/medicaldepartments/orthopaedics/clubfeet/inde\ x.html ok, hope this sheds some light for you and doesn't come off too harsh. Really, I do not mean anything I said to be that way at all. Let us know if you need any more information or resources k? Big hugs to you and , Kori >Thanks in advance for any insight! > >Teri, mommy to 10/5/02 bcf > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 I believe Kori covered everything. However, I wanted to add that we took my son to see Dr. Ponseti a month ago to make sure his feet were truely corrected. He is a wonderful man and doctor who took a great deal of time to fully understand all that was going on with , some related to clubfoot and some not. His questions were caring and thoughtful. was completely comfortable with him and his entire staff. If your son is in pain, please take him to see Dr. Ponseti. Pull every string you can find, and we will help. If anyone will be able to take away or decrease your son's pain it will be Dr. Ponseti. With your son being 3 1/2, I just wouldn't risk going to another doctor if at all possible. Go with the best! You will never have a single regret. 11/19/04 bilateral clubfeet frogabog wrote: At 08:52 AM 3/9/2006, you wrote: >Maybe someone here can help. Hi Teri, I think we can help, no... I know we can. However, the information you get here will likely go against all you've been told so far. Please know that anything said NEVER means you have done anything wrong and we know that you have done everything you could for your little boy. Now that you're here, you're in the best place for and we will do everything possible to help you find someone to help your son. Your pediatrician is in no way capable nor ever should have taken on treatment for this deformity. Pediatricians, unless trained in the Ponseti Method (I do not know of any who are actually) are not qualified to treat clubfoot or even evaluate it. Clubfoot should always be referred to an Orthopaedic Surgeon or a qualified Podiatrist trained specifically to correct clubfoot in children. I'm almost beyond myself wondering why the ped. did not refer you to an Ortho. but rather took it upon himself to prescribe treatment that apparently was not successful for your son and employed a treatment that has never shown to be either *standard* or successful for clubfoot. I find that very, very odd... Clubfeet corrected without surgery do not hurt. These children do not limp. There is no reason for them to. I really hate saying this, because it could be perceived as harsh criticism of you, mama (which it is sooooo NOT at all what I'm saying) but I feel it needs to be said so you understand the rest of what I'm going to say (and what the others will say too). >Brief summary - My youngest son was born 10/5/02 with mild bilateral >clubfoot. Treated for about 9 months with PT and Wheaton Bracesand >shortly after his first birthday his PT said she only needed to see >him for annual checks. I will address this treatment plan specifically. Clubfoot should be treated with specific manipulations and castings to gently, and swiftly bring the foot into a corrected position. It takes only 3-7 (9 at most) weekly castings to correct the feet. The last cast, which may or may not be a post tenotomy cast (the tenotomy is a small surgical procedure usually done in the physician's office under local anesthesia to *nick* the Achilles Tendon. This allows the tendon to regenerate and become long enough to allow the foot to dorsiflex enough for full range and flexion, functionality). PT is actually not part of this treatment although some parents have found it beneficial for various reasons. The mass majority of patients (children) have no PT at all even after correction. The fact that PT can help the foot look normal is great, and sure... it can work for some children. Obviously 's PT helped him. However as clubfoot is understood by the experts, relapse has a high chance of occurring in the first 5-6y and bracing is essential to maintaining a corrected foot. Without bracing past the first year the relapse rate is in the 80% range. In this respect, his PT and bracing should never have been discontinued. Additionally, the Wheaton Brace, even though used by many physicians to treat clubfoot and is marketed specifically for clubfoot is not the brace that works. Physicians who understand the non-surgical treatment of clubfoot properly do not use this brace. >At his 2 year well child, his pedi examined his feet and said he >didn't see the need for the PT evals (and therefore wouldn't write >the Rx needed for insurance to pay for the eval). This, in and of itself shows that this Dr. has little or no knowledge of the treatment for clubfoot. Exactly what is it to him if you continue PT with your child? Apologies in advance for being critical, yet again.... but he had no right to deny your son these evaluations. If the PT is the treating caregiver, the PT should be allowed to decide these things. >ANYWAY - fast forward to now - 3 years 5 months old. He walks with a >slight limp (always has, always will according to his PT) Doesn't >slow him down. Again, a limp is not normal nor should it be expected or tolerated. If the child limps, something is woefully wrong with the treatment. >But nights have become horrible for both of us - he'll wake at least >once a night kicking his feet against the end of his bed and >fussing " my feets my feets " when I ask what's wrong. oh that poor little one. My CF daughter is almost three and I have two older sons. This age... (any age!), nights should be peaceful and without pain. It breaks my heart to hear your son is having this experience. I hope you are able to use the information you will get here to help you and find a physician who is able to treat him so this stops. I'm sure it tears your heart out too when he says these things to you. I know we can help you find someone who can help him. >Growing pains? Regression? Should I see his pedi and request a PT >eval even though the pedi doesn't think he needs it? It sounds like you've got an HMO for insurance. So perhaps this will be difficult for you to do but it can be done. First, get a new ped. Find one who will refer your son to an Orthopaedic Surgeon who is trained in the Ponseti Method if that's what you need to do to get insurance to pay. You may have to make a ton of phone calls and emails to the ped's on your insurance list. You will find one though I'm sure. Find out who the qualified physicians (Ponseti Method) are in your area (Dr. is one I know of) and check with your insurance to see if they're covered. Then, find out from that physician, who in your insurance network they recommend you to see for your referral. now, with respect to what I would really recommend you do right now... I'm going to say something that will sound like an impossibility. So know that I realize this when you read it but also know that you are not alone in thinking this is impossible. Many others have heard this before, yet found the avenues to do it, and inexpensively. ok, deep breath... Go to Iowa City and see Dr. Ponseti. Hands down, before I even attempted to see any other physician I would do everything in my power to get to Iowa City and Dr. Ponseti ASAP. I say this much because of 's age, there is no one in the world more qualified to treat clubfoot in older children than Dr. Ponseti. I do not know a whole lot about Dr. 's success with older children, or if he's treated many but Dr. Ponseti has and can absolutely help your son. Dr. , from what I hear and see is a great Ponseti Doctor and not a bad second choice at all. But if it were my child... I'd go to Iowa for initial treatment and perhaps have Dr. follow up thereafter. We have resources for you to get free travel and very low cost rooming in Iowa. Others have gone before you, and much further who will help you with all the specifics. If you decide to do this, we can help you find a way. I so know this sounds crazy... to say drop everything and take you and your child (and other children if you have them - OMG what an idea... CRAZY!!!) to Iowa. Ya right you're thinking... yes, I know it sounds like I'm nuts or I have no idea what kind of leap that would be for you and your family. But you would not be the first to do it, and you won't be the last because in doing so, parents are giving their children the best chance at good feet or even perfect feet and it proves to be the best thing for the little ones out there. may simply need a cast or two to correct whatever is causing his pain and limp and bracing thereafter till about 5yo. That this will work for him is a very good possibility as they have been having significant success in Iowa treating even untreated clubfoot in older patients. 's feet aren't untreated, he's not walking on the top of his foot... he has a GREAT chance of getting through this and coming out with feet that do not hurt and are nicely corrected. Your situation is a little different than some parents who come here. Many come here after failed correction and being told surgery is the only answer. It sounds like you have little support from the medical professionals at all, they don't want to do anything to help you much less recommend surgery. In that respect, you might take comfort in knowing you haven't had that recommendation looming over you to make you crazy :~} If you would like, we do have parents who are adept at troubleshooting correction issues from viewing pictures and who could let you know how the foot *looks* and if a second opinion is warranted. From what you say however, I would have to say yes... a second opinion is warranted because his feet should not hurt and he should not limp. But if you would like, we can take a look at his feet (we even have a member who is trained in the Ponseti Method and has corrected many clubfeet herself, she is a Physician's Assistant who has trained with Dr. Ponseti and actually trains people to correct CF with this method, even Physicians) and let you know if they look like they're corrected. We cannot necessarily diagnose, but we do know a corrected foot from an uncorrected one and that may help you to understand why he's having these issues and what route you could follow hereafter. Here are the instructions for taking pictures of clubfeet for consultation. This is what Dr. Ponseti will ask for if you decide to email him for a consult. Oh, BTW... Dr. Ponseti will consult with you for free via email. Just email him with these pictures. That's all it takes. When sending pictures for consultation, this series shows the best views to determine if feet are properly corrected. For weight bearing views, hold your baby up and let them stand as flat on their feet as they naturally would. 1) From front with baby standing bearing weight. 2) From back (straight on) with babe standing bearing weight. 3) 1 each of both soles straight on. 4) 1 with you using your palm to push his forefoot as far up past " L " as possible from the side (profile). This shows dorsiflexion. UI Hospitals and Clinics Patient Education To Parents of Children Born with Clubfeet How to Contact Dr. Ponseti Ignacio Ponseti, M.D. Department of Orthopaedic Surgery, University of Iowa Hospitals and Clinics Peer Review Status: Internally Peer Reviewed ---------- Telephone: (319)356-3469 Address: University of Iowa Hospitals and Clinics 200 Hawkins Drive 010255 JPP Iowa City, IA 52242 Via E-mail: ignacio-ponseti@... The U of Iowa & Dr. Ponseti's Clubfoot website, with all the information you need... http://www.uihealthcare.com/topics/medicaldepartments/orthopaedics/clubfeet/inde\ x.html ok, hope this sheds some light for you and doesn't come off too harsh. Really, I do not mean anything I said to be that way at all. Let us know if you need any more information or resources k? Big hugs to you and , Kori >Thanks in advance for any insight! > >Teri, mommy to 10/5/02 bcf > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 No offense taken whatsoever. LOTS of info to digest, but it's good to know that my biggest fear (that I'd overlooked the lack of follow- up and caused permanent injury) is not necessarily a fear. A little more about us. was born with his cord around his neck - blue baby. Because of other problems (mainly tone issues which have resolved themselves) his feet were overlooked until about 4 months old, and he wasn't even referred to a PT until 6 months. His feet were not severely clubbed - here is a link to his picture at 7.5 mo after about 6 weeks of PT (http://www.angelfire.com/mi3/terib/feet/feet.htm) Between 6 months and 7 months he was going 3x a week for an hour - and in the beginning clubfoot wasn't even the diagnosis. I heard CP (because of his birth, the tone issues, and motor delays – he didn't ROLL until 6 mo), and a few other things before she (his PT) finally said " bilateral in-toeing and tight heel cords " . I ended up scouring the net, found the Clubfoot board at ParentsPlace.com and said " IS this what is wrong with my child " . Finally 2 weeks later I asked his PT " Does he have clubfoot " and she said yes, but she hated to call it that because it was " so minor " . 20/20 hindsight says that's when I should have looked for a second opinion. But there were other things going on in my life and I was overwhelmed. So I let myself believe that she knew what she was talking about and what was best. I'm not knocking her at all – she did wonders for – like I said above…At 6 months when she first saw him, he was not even rolling over. Within a week of working with him he was. His legs were rigid from hips down – he was like holding a ragdoll with china legs. By 7 months he was creeping with his arms. 8 months brought sitting with no assistance. 9 months (4 weeks after beginning to wear the Wheatons at night) to my shock and awe he actually pulled up on the coffee table to cruise a few steps on tip-toe. At that point she said he was doing wonderful, but probably wouldn't walk un-aided before his second birthday. Kept pressing on – stretching his feet, massaging his legs, Wheatons as much as he'd tolerate them. The week after his first birthday we were at PT going through his exercises and he let go of my hands to stand un-assisted. (Older brothers didn't do this until almost 14 months). The following week his PT was about 3 steps away and had his favorite toy – he was " standing " and again he let go. Then we both bawled when the little stinker took those 3 steps to get to her (and his toy). He is at his father's for the weekend – but I will try to get new pictures up next week. We are actually worse than a HMO – he has Medicaid only now. And getting them to cover anything has been like pulling teeth. Ladies – thank you! > >Maybe someone here can help. > > Hi Teri, > > I think we can help, no... I know we can. However, the information > you get here will likely go against all you've been told so > far. Please know that anything said NEVER means you have done > anything wrong and we know that you have done everything you could > for your little boy. > > Now that you're here, you're in the best place for and we will > do everything possible to help you find someone to help your > son. Your pediatrician is in no way capable nor ever should have > taken on treatment for this deformity. Pediatricians, unless trained > in the Ponseti Method (I do not know of any who are actually) are not > qualified to treat clubfoot or even evaluate it. Clubfoot should > always be referred to an Orthopaedic Surgeon or a qualified > Podiatrist trained specifically to correct clubfoot in children. I'm > almost beyond myself wondering why the ped. did not refer you to an > Ortho. but rather took it upon himself to prescribe treatment that > apparently was not successful for your son and employed a treatment > that has never shown to be either *standard* or successful for > clubfoot. I find that very, very odd... Clubfeet corrected without > surgery do not hurt. These children do not limp. There is no reason > for them to. I really hate saying this, because it could be > perceived as harsh criticism of you, mama (which it is sooooo NOT at > all what I'm saying) but I feel it needs to be said so you understand > the rest of what I'm going to say (and what the others will say too). > > > >Brief summary - My youngest son was born 10/5/02 with mild bilateral > >clubfoot. Treated for about 9 months with PT and Wheaton Bracesand > >shortly after his first birthday his PT said she only needed to see > >him for annual checks. > > I will address this treatment plan specifically. Clubfoot should be > treated with specific manipulations and castings to gently, and > swiftly bring the foot into a corrected position. It takes only 3- 7 > (9 at most) weekly castings to correct the feet. The last cast, > which may or may not be a post tenotomy cast (the tenotomy is a small > surgical procedure usually done in the physician's office under local > anesthesia to *nick* the Achilles Tendon. This allows the tendon to > regenerate and become long enough to allow the foot to dorsiflex > enough for full range and flexion, functionality). PT is actually > not part of this treatment although some parents have found it > beneficial for various reasons. The mass majority of patients > (children) have no PT at all even after correction. The fact that PT > can help the foot look normal is great, and sure... it can work for > some children. Obviously 's PT helped him. However as clubfoot > is understood by the experts, relapse has a high chance of occurring > in the first 5-6y and bracing is essential to maintaining a corrected > foot. Without bracing past the first year the relapse rate is in the > 80% range. In this respect, his PT and bracing should never have > been discontinued. Additionally, the Wheaton Brace, even though used > by many physicians to treat clubfoot and is marketed specifically for > clubfoot is not the brace that works. Physicians who understand the > non-surgical treatment of clubfoot properly do not use this brace. > > > >At his 2 year well child, his pedi examined his feet and said he > >didn't see the need for the PT evals (and therefore wouldn't write > >the Rx needed for insurance to pay for the eval). > > This, in and of itself shows that this Dr. has little or no knowledge > of the treatment for clubfoot. Exactly what is it to him if you > continue PT with your child? Apologies in advance for being > critical, yet again.... but he had no right to deny your son these > evaluations. If the PT is the treating caregiver, the PT should be > allowed to decide these things. > > > >ANYWAY - fast forward to now - 3 years 5 months old. He walks with a > >slight limp (always has, always will according to his PT) Doesn't > >slow him down. > > Again, a limp is not normal nor should it be expected or > tolerated. If the child limps, something is woefully wrong with the > treatment. > > >But nights have become horrible for both of us - he'll wake at least > >once a night kicking his feet against the end of his bed and > >fussing " my feets my feets " when I ask what's wrong. > > oh that poor little one. My CF daughter is almost three and I have > two older sons. This age... (any age!), nights should be peaceful > and without pain. It breaks my heart to hear your son is having this > experience. I hope you are able to use the information you will get > here to help you and find a physician who is able to treat him > so this stops. I'm sure it tears your heart out too when he says > these things to you. I know we can help you find someone who can help him. > > > >Growing pains? Regression? Should I see his pedi and request a PT > >eval even though the pedi doesn't think he needs it? > > It sounds like you've got an HMO for insurance. So perhaps this will > be difficult for you to do but it can be done. First, get a new > ped. Find one who will refer your son to an Orthopaedic Surgeon who > is trained in the Ponseti Method if that's what you need to do to get > insurance to pay. You may have to make a ton of phone calls and > emails to the ped's on your insurance list. You will find one though > I'm sure. Find out who the qualified physicians (Ponseti Method) are > in your area (Dr. is one I know of) and check with your > insurance to see if they're covered. Then, find out from that > physician, who in your insurance network they recommend you to see > for your referral. > > now, with respect to what I would really recommend you do right > now... I'm going to say something that will sound like an > impossibility. So know that I realize this when you read it but also > know that you are not alone in thinking this is impossible. Many > others have heard this before, yet found the avenues to do it, and > inexpensively. > > ok, deep breath... > > Go to Iowa City and see Dr. Ponseti. Hands down, before I even > attempted to see any other physician I would do everything in my > power to get to Iowa City and Dr. Ponseti ASAP. I say this much > because of 's age, there is no one in the world more qualified to > treat clubfoot in older children than Dr. Ponseti. I do not know a > whole lot about Dr. 's success with older children, or if he's > treated many but Dr. Ponseti has and can absolutely help your > son. Dr. , from what I hear and see is a great Ponseti Doctor > and not a bad second choice at all. But if it were my child... I'd > go to Iowa for initial treatment and perhaps have Dr. follow up > thereafter. > > We have resources for you to get free travel and very low cost > rooming in Iowa. Others have gone before you, and much further who > will help you with all the specifics. If you decide to do this, we > can help you find a way. > > I so know this sounds crazy... to say drop everything and take you > and your child (and other children if you have them - OMG what an > idea... CRAZY!!!) to Iowa. Ya right you're thinking... yes, I know > it sounds like I'm nuts or I have no idea what kind of leap that > would be for you and your family. But you would not be the first to > do it, and you won't be the last because in doing so, parents are > giving their children the best chance at good feet or even perfect > feet and it proves to be the best thing for the little ones out > there. may simply need a cast or two to correct whatever is > causing his pain and limp and bracing thereafter till about > 5yo. That this will work for him is a very good possibility as they > have been having significant success in Iowa treating even untreated > clubfoot in older patients. 's feet aren't untreated, he's not > walking on the top of his foot... he has a GREAT chance of getting > through this and coming out with feet that do not hurt and are nicely > corrected. > > Your situation is a little different than some parents who come > here. Many come here after failed correction and being told surgery > is the only answer. It sounds like you have little support from the > medical professionals at all, they don't want to do anything to help > you much less recommend surgery. In that respect, you might take > comfort in knowing you haven't had that recommendation looming over > you to make you crazy :~} > > If you would like, we do have parents who are adept at > troubleshooting correction issues from viewing pictures and who could > let you know how the foot *looks* and if a second opinion is > warranted. From what you say however, I would have to say yes... a > second opinion is warranted because his feet should not hurt and he > should not limp. But if you would like, we can take a look at his > feet (we even have a member who is trained in the Ponseti Method and > has corrected many clubfeet herself, she is a Physician's Assistant > who has trained with Dr. Ponseti and actually trains people to > correct CF with this method, even Physicians) and let you know if > they look like they're corrected. We cannot necessarily diagnose, > but we do know a corrected foot from an uncorrected one and that may > help you to understand why he's having these issues and what route > you could follow hereafter. > > Here are the instructions for taking pictures of clubfeet for > consultation. This is what Dr. Ponseti will ask for if you decide to > email him for a consult. Oh, BTW... Dr. Ponseti will consult with > you for free via email. Just email him with these pictures. That's > all it takes. > > When sending pictures for consultation, this series shows the best > views to determine if feet are properly corrected. For weight bearing > views, hold your baby up and let them stand as flat on their feet as > they naturally would. > > 1) From front with baby standing bearing weight. > 2) From back (straight on) with babe standing bearing > weight. > 3) 1 each of both soles straight on. > 4) 1 with you using your palm to push his forefoot as > far up past " L " as possible from the side (profile). This shows > dorsiflexion. > > UI Hospitals and Clinics Patient Education > > To Parents of Children Born with Clubfeet > > > How to Contact Dr. Ponseti > > Ignacio Ponseti, M.D. > Department of Orthopaedic Surgery, University of Iowa Hospitals and Clinics > Peer Review Status: Internally Peer Reviewed > > ---------- > Telephone: > > (319)356-3469 > > Address: > > University of Iowa Hospitals and Clinics > 200 Hawkins Drive > 010255 JPP > Iowa City, IA 52242 > > Via E-mail: > > ignacio-ponseti@... > > > The U of Iowa & Dr. Ponseti's Clubfoot website, with all the > information you need... > > http://www.uihealthcare.com/topics/medicaldepartments/orthopaedics/clu bfeet/index.html > > ok, hope this sheds some light for you and doesn't come off too > harsh. Really, I do not mean anything I said to be that way at > all. Let us know if you need any more information or resources k? > > Big hugs to you and , > > Kori > > > > > >Thanks in advance for any insight! > > > >Teri, mommy to 10/5/02 bcf > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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