Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 Hello all! I have been lurking for a couple of weeks now, and chatting with ee via e-mail. But now it's time to " de-lurk " with a question! At my 21 week ultrasound, they discovered that our baby has bilateral clubfeet. We had three docs in our office look at the results, and had a subsequent u/s, all with the same conclussion. Well, today at my son's two year checkup, we mentioned our diagnosis to his ped, and told her our intent to go to the UofI and Dr. Ponseti for treatment. She told us she thinks in utero diagnosis is faulty, and that she has known people whose babies have been born with no problems at all, or with positional cf instead of " true " cf. She urged us to wait until he was born...and she said even then it can take up to a month to be able to tell for sure!!!! She also said she would send us to Oklahoma City (we're in Tulsa) to an ortho ped there. She says they are " very conservative " in treating cf, and that they rarely perform surgery after casting. When I described the DB bar to her, she told us it was an old-fashioned form of brace. This goes against everything I have read so far! Our ped had never heard of the Ponseti Method, so couldn't comment on this treatment, but was certainly encouraging a wait and see attitude. While I understand we won't know the severity of his cf until he is born, aren't ultrasound diagnosis pretty accurate? Does anyone know of any cases where a pg mom has gotten a false reading? Our ped seemed so nonchalant, it was almost getting my hopes up that my ob/gyns are wrong. HELP!!!! Jennfier Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 Jenn: I am sure that there is a chance of a false reading but not normally. I think it would be in your benefit to have all your ducks in a row before birth. We were able to tell for sure right away that it was clubfeet. We didn't need to wait for a month. The feet are much more flexible and easier to manipulate after birth. Although waiting a month isn't really going to hurt. I would encourage you to find a " Ponseti " doctor and set up a consultation (Just in case). I don't know what we would have done if we hadn't found the Ponseti Method. Good Luck. Reid Austin -8/1/05 jennlinmcl39 wrote: Hello all! I have been lurking for a couple of weeks now, and chatting with ee via e-mail. But now it's time to " de-lurk " with a question! At my 21 week ultrasound, they discovered that our baby has bilateral clubfeet. We had three docs in our office look at the results, and had a subsequent u/s, all with the same conclussion. Well, today at my son's two year checkup, we mentioned our diagnosis to his ped, and told her our intent to go to the UofI and Dr. Ponseti for treatment. She told us she thinks in utero diagnosis is faulty, and that she has known people whose babies have been born with no problems at all, or with positional cf instead of " true " cf. She urged us to wait until he was born...and she said even then it can take up to a month to be able to tell for sure!!!! She also said she would send us to Oklahoma City (we're in Tulsa) to an ortho ped there. She says they are " very conservative " in treating cf, and that they rarely perform surgery after casting. When I described the DB bar to her, she told us it was an old-fashioned form of brace. This goes against everything I have read so far! Our ped had never heard of the Ponseti Method, so couldn't comment on this treatment, but was certainly encouraging a wait and see attitude. While I understand we won't know the severity of his cf until he is born, aren't ultrasound diagnosis pretty accurate? Does anyone know of any cases where a pg mom has gotten a false reading? Our ped seemed so nonchalant, it was almost getting my hopes up that my ob/gyns are wrong. HELP!!!! Jennfier Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 I really don't mean to burst your bubble. I had the same hopes that possibly the ultrasound was inaccurate. But it was accurate. Ultrasound these days is very accurate. And in this case it's a very fortunate thing because it gives you the time to do your research. I think you will find that the Ponseti method is the best way to go in treatment methods. The bar thing may look old-fashioned compared to some of those boot braces, but it's Ponseti's bar that achieves perfect little feet (when used after proper Ponseti casting). You know what they say, looks can be deceiving. Just cause the more modern looking braces look good doesn't mean they work. That's just my two cents. > > Hello all! > > I have been lurking for a couple of weeks now, and chatting with > ee via e-mail. But now it's time to " de-lurk " with a question! > > At my 21 week ultrasound, they discovered that our baby has bilateral > clubfeet. We had three docs in our office look at the results, and had > a subsequent u/s, all with the same conclussion. > > Well, today at my son's two year checkup, we mentioned our diagnosis > to his ped, and told her our intent to go to the UofI and Dr. Ponseti > for treatment. > > She told us she thinks in utero diagnosis is faulty, and that she has > known people whose babies have been born with no problems at all, or > with positional cf instead of " true " cf. > > She urged us to wait until he was born...and she said even then it can > take up to a month to be able to tell for sure!!!! > > She also said she would send us to Oklahoma City (we're in Tulsa) to > an ortho ped there. She says they are " very conservative " in treating > cf, and that they rarely perform surgery after casting. When I > described the DB bar to her, she told us it was an old-fashioned form > of brace. > > This goes against everything I have read so far! > > Our ped had never heard of the Ponseti Method, so couldn't comment on > this treatment, but was certainly encouraging a wait and see attitude. > > While I understand we won't know the severity of his cf until he is > born, aren't ultrasound diagnosis pretty accurate? > > Does anyone know of any cases where a pg mom has gotten a false reading? > > Our ped seemed so nonchalant, it was almost getting my hopes up that > my ob/gyns are wrong. > > HELP!!!! > > Jennfier > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 Hey , HELLO! So good to see you came on board I feel better knowing you're tapping the whole barrel instead of just my little cup full of knowledge. I don't know of any " false " results - not to say it couldn't happen. If someone here will help us find it I know there is a list of Questions To Ask Your Doctor regarding cf treatments...you could print that off and interview with this OKC doctor if that'll help you come to conclusions regarding treatments. s. (shawnee) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 , At the risk of sounding long-winded (as usual) I really want to discourage you on this one. You know I have gone two different routes with my two boys - and I can't say enough how much better, easier, cheaper, BETTER the Ponseti Method is. Ponseti's method is based on a very sequential manner of serial casting. Not all serial casting is the same although all cf doctors use serial casting. A Mac Truck and a little Toyota both have motors and transmissions...but they are hardly the same. It's the way the bones are moved inside the cast that is key. By having discovered the sequence necessary to manipulate the bones back to their NATURAL/NORMAL position, the method works very quickly and painlessly. And thus, allows the foot to grow and function NORMALLY through out adulthood. Nothing artificial has been done to hinder that progress. The risk with other methods is dr's often just cram the foot in to a normal-looking position that is far from normal on the inside - and if you don't move Bone A correctly before you attempt to move Bone B - well you are setting it up to crash, for pain, deformity, more time in casts to force an un=natural occurance to be natural against it's will. The clubbed foot has all the necessary parts to be normal, they are just out of sequence. It's a jigsaw puzzle, you can't force square pegs in to round holes and expect good results. The Ponseti Method fits each piece in to it's precise location with no force involved. Anything other than the FAB after casting is not going to hold the feet where they need to be. The FAB is not to gain correction. The FAB is to HOLD correction gained through serial casting. Other dr's have tried using an AFO - basically a plastic boot with no bar - with disasterous restults. My was in AFO's for over a year. They did nothing but cause him to sink further. At age 2 he was still deformed and stumbling around like a drunk getting black eyes on the corners of all the tables. The FAB by design, holds the feet where they need to be. If you hold your own legs out straight, feet shoulder width apart, your toes pointing out to 70 degrees and kicked up about 10 degrees, you will notice a feeling in your legs that is stretching the muscles and tendons. A cf baby needs to be held in this position as he grows. There is not another brace that maintains the correction. The plastic AFO is hardly different from you wearing a sturdy pair of combat boots. They just don't hold the foot where it needs to be. Even wearing stiff boots you can point your toes towards each other - and the clubbed foot wants to go back to being clubbed, which is pointing towards each other to a large extent. How would an AFO prevent relapse then? True, the Ponseti Method " over " corrects the foot, and 70 degrees rotation sounds a bit severe, but the reasoning behind that is that the foot is going to gradually relapse to a normal position over time...and it will....it's all part of the process. But even our feet that were born normally can extend to 70 degrees, so it's not tradign one deformity for another, it's just bringing everything back where it should have been to begin with. There just hasn't been another method that has proven such perfect results - and the Ponseti Method is proven with 50 years of use and at least one 40 year follow up study I know of, plus other lesser follow up studies involving teens and young adults. Done correctly, by a qualified doctor - you can litereally expect a 95% success rate. Everett is enjoying a solid 100% at the moment. Everett got in 5 weeks what didnt' get in two years. Everett has the perfect feet at age 2 that his older brother will never have even if he lives to be a hundred. didn't so see some witch doctor - he went to see a highly trained ortho that was highly recommended and respected in his field. But the guy didn't know jack about the sequence of manipulating bones in an infant's feet to get normal feet out of the process, and knew jack about a bracing protocol afterwards. It's a situation of Never Say Never...perhaps this doc in OKC is a needle in a haystack who has been keeping some amazing secret to his success hidden from the world. But to me it is not worth spending a dollar to save a dime by taking that chance with him. It's boiled down to: A bird in the hand is better than two in the bush. A sure thing vs. a gamble. Positional vs. Real Club foot ... I don't think it happens all that often. And even best case scenerio it's positional, well a qualified Ponseti Doctor is going to be able to tell that immediately, send you home and all is well, not a month down the road - and if the child needs casting, it's way better to start earlier than a month and get this monkey off your back than regret not starting sooner. Like i said, I'm so glad you came to the board with these concerns because I DON'T want you to just take my word for it - I want you to study adn learn and do your own research so YOU will be convinced, and not just talked in to something by one faceless person on the computer and end up with some misgiving involved. Best of Luck to you, s. Re: New and confused! Jenn: I am sure that there is a chance of a false reading but not normally. I think it would be in your benefit to have all your ducks in a row before birth. We were able to tell for sure right away that it was clubfeet. We didn't need to wait for a month. The feet are much more flexible and easier to manipulate after birth. Although waiting a month isn't really going to hurt. I would encourage you to find a " Ponseti " doctor and set up a consultation (Just in case). I don't know what we would have done if we hadn't found the Ponseti Method. Good Luck. Reid Austin -8/1/05 jennlinmcl39 wrote: Hello all! I have been lurking for a couple of weeks now, and chatting with ee via e-mail. But now it's time to " de-lurk " with a question! At my 21 week ultrasound, they discovered that our baby has bilateral clubfeet. We had three docs in our office look at the results, and had a subsequent u/s, all with the same conclussion. Well, today at my son's two year checkup, we mentioned our diagnosis to his ped, and told her our intent to go to the UofI and Dr. Ponseti for treatment. She told us she thinks in utero diagnosis is faulty, and that she has known people whose babies have been born with no problems at all, or with positional cf instead of " true " cf. She urged us to wait until he was born...and she said even then it can take up to a month to be able to tell for sure!!!! She also said she would send us to Oklahoma City (we're in Tulsa) to an ortho ped there. She says they are " very conservative " in treating cf, and that they rarely perform surgery after casting. When I described the DB bar to her, she told us it was an old-fashioned form of brace. This goes against everything I have read so far! Our ped had never heard of the Ponseti Method, so couldn't comment on this treatment, but was certainly encouraging a wait and see attitude. While I understand we won't know the severity of his cf until he is born, aren't ultrasound diagnosis pretty accurate? Does anyone know of any cases where a pg mom has gotten a false reading? Our ped seemed so nonchalant, it was almost getting my hopes up that my ob/gyns are wrong. HELP!!!! Jennfier Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 , The chances are that the clubfoot will be there if it has been confirmed my several docs. Personally, I would rather plan out my course of treatment ahead of time and if for by some fluke it is not clubfoot, then you would be able to gladly call the doctor and say, sorry I don't need you afterall! Positional clubfoot is still clubfoot and still requires treatment. There is a " related " anomoly called metatarsus adductus in which the foot just curves inward - this condition generally spontaneously corrects itself and does not require treatment. True clubfoot whether caused by environmental factors, genetics or position in the womb (actually this is unusual especially in a case where the clubfoot is noted on a ultrasound at this stage as there is still plenty of room in there), requires treatment. The Ponseti method, when applied correctly will correct the baby's foot without the need for invasive surgery. A very important point is that the Ponseti method is becoming widely used but not all doctors who say they are using it are using it correctly. It takes a very precise manipulation of the bones of the foot. There is a list of questions you can ask your prospective doctor here: http://members.tripod.com/ponseti_links-ivil/id13.html My recommendation since there are no know doctors in OK who are doing the method well, would be to come to St. Louis and see Dr. Dobbs, he's wonderful!, or go to the man himself, Dr. Ponseti in Iowa (or really any of the doctors who work at the University of Iowa with him). I would love to chat more, but I gotta run now. > > Hello all! > > I have been lurking for a couple of weeks now, and chatting with > ee via e-mail. But now it's time to " de-lurk " with a question! > > At my 21 week ultrasound, they discovered that our baby has bilateral > clubfeet. We had three docs in our office look at the results, and had > a subsequent u/s, all with the same conclussion. > > Well, today at my son's two year checkup, we mentioned our diagnosis > to his ped, and told her our intent to go to the UofI and Dr. Ponseti > for treatment. > > She told us she thinks in utero diagnosis is faulty, and that she has > known people whose babies have been born with no problems at all, or > with positional cf instead of " true " cf. > > She urged us to wait until he was born...and she said even then it can > take up to a month to be able to tell for sure!!!! > > She also said she would send us to Oklahoma City (we're in Tulsa) to > an ortho ped there. She says they are " very conservative " in treating > cf, and that they rarely perform surgery after casting. When I > described the DB bar to her, she told us it was an old-fashioned form > of brace. > > This goes against everything I have read so far! > > Our ped had never heard of the Ponseti Method, so couldn't comment on > this treatment, but was certainly encouraging a wait and see attitude. > > While I understand we won't know the severity of his cf until he is > born, aren't ultrasound diagnosis pretty accurate? > > Does anyone know of any cases where a pg mom has gotten a false reading? > > Our ped seemed so nonchalant, it was almost getting my hopes up that > my ob/gyns are wrong. > > HELP!!!! > > Jennfier > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 Welcome to the board and congrats on your pregnancy. Unfortunately, although clubfoot is one of the most common birth defects, many doctors (even orthopaedic surgeons!) really are ignorant about the condition and it's treatment. It's unfortunate especially for OB/GYN's, Pediatricians and Family Practitioners who come in contact with clubfoot families during their practice. The good news is that there is a lot of information available to you on the internet, so even though you're not getting much valid information from your current doctor, you can work on educating yourself, and in the end, you might be able to educate this pediatrician so that she might help future mothers who might not think to look on the internet for information. There was a study completed in the UK a number of years ago that showed that about 25% of the ultrasound diagnosis of clubfoot were incorrect. There are a lot of variables in diagnosing clubfoot via ultrasound- the skill of the technician, the age of the fetus, and the position of the baby are probably the biggest factors of a good diagnosis. Many of us had multiple scans and the condition wasn't diagnosed- myself included! I don't know if that percentage would hold true by today's standards, or what the circumstances were surrounding that original study. In reading posts for 5+ years, I recall maybe 2 parents who came back to the boards after their baby was born telling us that the u/s diagnosis was wrong. Maybe there were more and they just didn't come back to give updates. I beg to differ with your doctor telling you that your baby's diagnosis could be " positional " clubfoot.....at 21 weeks, there's still lots of room for your baby to move, and if the baby was diagnosed at two different ultrasounds with clubfoot, then I would venture to guess that it's definitely not from lack of space at this point in the pregnancy. Your baby might have metatarsus adductus, or some other condition similar to clubfoot, or a perfectly straight foot...but not " positional " clubfoot in my unmedical opinion. She's off her rocker if she thinks that it takes a month after birth for the condition to be diagnosed also. I'm not sure if printing off information would convince this doctor to change her tune at all. You know her best and would know if she might be open to you bringing her medical information or if she's not going to change in her mindset regardless. I would recommend that you work with your OB/GYN on coming up with a treatment/referral plan. Perhaps they can find another pediatrician or orthopaedic surgeon who will help you. There is a list of questions for interviewing potential orthopaedic doctors at this site: http://members.tripod.com/ponseti_links-ivil You can't go wrong with your plan to go to the U of Iowa, though! I just thought I'd share this with you in case you do end up calling the docs in O.C. to interview them about their treatment protocol. I hope this information helps! There is a chance that your baby boy won't have clubfoot, but at least you know that there is a good possibility and you have time to find a good doctor and know what's ahead as far as treatment and daily life. Hanging out here will help you realize that it may seem overwhelming at first, but you'll get through it, and pretty soon you'll be on the " other side " looking back and wondering where the time went. We're here to help you find information and answer all your questions. You're very right, the " old-fashioned " items that you've described in your email is your pediatrician's take on clubfoot, not the foot abduction brace. Best wishes, & (3-16-00, left clubfoot, switched to Ponseti method at 4 months old) http://ponseticlubfoot.freeservers.com/ > > Hello all! > > I have been lurking for a couple of weeks now, and chatting with > ee via e-mail. But now it's time to " de-lurk " with a question! > > At my 21 week ultrasound, they discovered that our baby has bilateral > clubfeet. We had three docs in our office look at the results, and had > a subsequent u/s, all with the same conclussion. > > Well, today at my son's two year checkup, we mentioned our diagnosis > to his ped, and told her our intent to go to the UofI and Dr. Ponseti > for treatment. > > She told us she thinks in utero diagnosis is faulty, and that she has > known people whose babies have been born with no problems at all, or > with positional cf instead of " true " cf. > > She urged us to wait until he was born...and she said even then it can > take up to a month to be able to tell for sure!!!! > > She also said she would send us to Oklahoma City (we're in Tulsa) to > an ortho ped there. She says they are " very conservative " in treating > cf, and that they rarely perform surgery after casting. When I > described the DB bar to her, she told us it was an old-fashioned form > of brace. > > This goes against everything I have read so far! > > Our ped had never heard of the Ponseti Method, so couldn't comment on > this treatment, but was certainly encouraging a wait and see attitude. > > While I understand we won't know the severity of his cf until he is > born, aren't ultrasound diagnosis pretty accurate? > > Does anyone know of any cases where a pg mom has gotten a false reading? > > Our ped seemed so nonchalant, it was almost getting my hopes up that > my ob/gyns are wrong. > > HELP!!!! > > Jennfier > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 When I was about 25 weeks pregnant, I had an ultrasound, and the results showed that the baby might have clubfoot. I don't know why he didn't get a stronger ultrasound to find out for sure, I don't know. Now I didn't know whether to believe him or not because the ultrasound tech was a moron at the office where he worked. She gave us so many false alarms about certain conditions, it wasn't even funny. However, he let me know that this was a possibility. So, I did a lot of research on my own, before I found this group. I was at a teaching hospital that was supposedly well prepared for this sort of thing. When Maddie was born, we discovered they were right. She did have a clubfoot. However, to our surprise, she had a cute little matching set of clubfeet. The residents casted both her legs the very next day. The one big clue I should have picked up on was that the doctors kept bringing residents, and other doctors in to see " the baby with the clubfeet. " I probably should have taken this as a sign the hospital didn't see many clubfoot babies. Hint number 2 that I should have picked up on was the fact that every time she was casted, she would scream a ton. So, long story short, after about 6 weeks of casts, the doctor moved her into the dbb, set at 45 degrees, with the bar as straight as can be. As the other mothers in this group would tell you and told me, was that this was not the way to set up the brace, and screaming her head off for almost two weeks was not normal. Turns out her feet were not fully corrected. So, I go back to the same doctor, another mistake (I'm beginning to lose count of these mistakes), and he kept blaming me for being inept at putting the brace on. He didn't even look at her foot until I made him take the brace off. Then, he realized he was at fault, didn't apologize for insulting us, and then was all set to perform a tenotomy on her. Now, I knew she would probably need a tenotomy in at least one, if not both feet, but a combination of mommy instinct and realizing how many mistakes had been made thus far, I took Maddie out of the office, and NEVER looked back Maddie lost a little correction while waiting a week to be seen by new doctors, on Ponseti's certified list. However, since she wasn't corrected right the first time, I wasn't too worried. Long story, somewhat short, Maddie had her tenotomy, and after a few setbacks, not the docs fault, she will be moving into the shoes tomorrow, and i couldn't be happier with her care. Since you have a heads up on the probability your baby has clubfeet, get a Ponseti doctor lined up for your baby, and keep on this support group. Everyone here is extremely supportive, and between all of our experiences, most if not all of your questions will be answered. If it does turn out your baby does not have clubfeet, the Ponseti doc will tell you, and you can go on your way. Better to be safe and prepared than sorry later. I shall now get off of my soapbox. Good luck, keep us posted, and most of all, enjoy that beautiful baby. - Michele 5/18/02 and Maddie 9/6/05 bcf jennlinmcl39 wrote: Hello all! I have been lurking for a couple of weeks now, and chatting with ee via e-mail. But now it's time to " de-lurk " with a question! At my 21 week ultrasound, they discovered that our baby has bilateral clubfeet. We had three docs in our office look at the results, and had a subsequent u/s, all with the same conclussion. Well, today at my son's two year checkup, we mentioned our diagnosis to his ped, and told her our intent to go to the UofI and Dr. Ponseti for treatment. She told us she thinks in utero diagnosis is faulty, and that she has known people whose babies have been born with no problems at all, or with positional cf instead of " true " cf. She urged us to wait until he was born...and she said even then it can take up to a month to be able to tell for sure!!!! She also said she would send us to Oklahoma City (we're in Tulsa) to an ortho ped there. She says they are " very conservative " in treating cf, and that they rarely perform surgery after casting. When I described the DB bar to her, she told us it was an old-fashioned form of brace. This goes against everything I have read so far! Our ped had never heard of the Ponseti Method, so couldn't comment on this treatment, but was certainly encouraging a wait and see attitude. While I understand we won't know the severity of his cf until he is born, aren't ultrasound diagnosis pretty accurate? Does anyone know of any cases where a pg mom has gotten a false reading? Our ped seemed so nonchalant, it was almost getting my hopes up that my ob/gyns are wrong. HELP!!!! Jennfier Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 That was a GREAT post ee! Hello , Welcome to the board, glad you are here =) You will find so much support and helpful information here! The Ponseti method is really the least invasive and best treatment for clubfoot that there is. More and more doctors are using this method everyday after seeing such poor outcomes from surgerical treatment. Our Ped. has also not heard of the Ponseti method and I printed off a copy of the Global help booklet to take to him when we go in a couple of weeks for Grace's 1.5 yr shots. He couldn't tell at first glance which of her feet was clubbed and was amazed at how her cf looked. I think that a ped probably dosen't see many cf babies and orthodic issues are not a part of a ped's specialty so I personally wouldn't take a ped's advise as the best source of information for the best treatment options for clubfoot. The fact that she thinks that the FAB (the brace) is an old-fashioned form of treatment says it all. It is either the Ponseti method with the FAB or surgical treatment really and surgery is NOT the way to go!! Surgery causes scar tissue and scar tissue causes painful feet later in life. Many kids start feeling the effects of the surgeries in their teens. It is now known that positional cases of clubfoot are extremly rare, it is an old school of thought really, clubfoot is idiopathic - present at birth and is seen after the 16th week on U/S. No one knows for sure why it happens, it is thought that it is part genetic and part enviornmental. There is a genetic study being done now by Dr. Dobbs that will hopefully answer all these questions. What I want to tell you is that the Ponseti method is really the best treatment out there and your baby deserves the best treatment available, heck, all kids do. Really glad that you found this board and that your baby will be treated by the method. I am sure that after you do some research, that you will do whatever you have to to get your baby to a qualified Ponseti doctor. Check out the links section, there you will find a ton of info. Dr. Ponseit's web site etc etc, some very interesting information. Once again, welcome. & Grace 17 mos unilateral right clubfoot FAB 13 hrs > Hello all! > > I have been lurking for a couple of weeks now, and chatting with > ee via e-mail. But now it's time to " de-lurk " with a question! > > At my 21 week ultrasound, they discovered that our baby has bilateral > clubfeet. We had three docs in our office look at the results, and had > a subsequent u/s, all with the same conclussion. > > Well, today at my son's two year checkup, we mentioned our diagnosis > to his ped, and told her our intent to go to the UofI and Dr. Ponseti > for treatment. > > She told us she thinks in utero diagnosis is faulty, and that she has > known people whose babies have been born with no problems at all, or > with positional cf instead of " true " cf. > > She urged us to wait until he was born...and she said even then it can > take up to a month to be able to tell for sure!!!! > > She also said she would send us to Oklahoma City (we're in Tulsa) to > an ortho ped there. She says they are " very conservative " in treating > cf, and that they rarely perform surgery after casting. When I > described the DB bar to her, she told us it was an old-fashioned form > of brace. > > This goes against everything I have read so far! > > Our ped had never heard of the Ponseti Method, so couldn't comment on > this treatment, but was certainly encouraging a wait and see attitude. > > While I understand we won't know the severity of his cf until he is > born, aren't ultrasound diagnosis pretty accurate? > > Does anyone know of any cases where a pg mom has gotten a false reading? > > Our ped seemed so nonchalant, it was almost getting my hopes up that > my ob/gyns are wrong. > > HELP!!!! > > Jennfier > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 screamed and cried at every cast change for six solid months, had to be restrained physically, then cried for days after each time.... It shouldn't be a painful process, not like that, not even close. Everett cried because he didn't shut up for the first four months of his life, ha ha, but casting didn't phase him - that was the whole tongue-tied-starving-to-death issue working there. s. Re: New and confused! When I was about 25 weeks pregnant, I had an ultrasound, and the results showed that the baby might have clubfoot. I don't know why he didn't get a stronger ultrasound to find out for sure, I don't know. Now I didn't know whether to believe him or not because the ultrasound tech was a moron at the office where he worked. She gave us so many false alarms about certain conditions, it wasn't even funny. However, he let me know that this was a possibility. So, I did a lot of research on my own, before I found this group. I was at a teaching hospital that was supposedly well prepared for this sort of thing. When Maddie was born, we discovered they were right. She did have a clubfoot. However, to our surprise, she had a cute little matching set of clubfeet. The residents casted both her legs the very next day. The one big clue I should have picked up on was that the doctors kept bringing residents, and other doctors in to see " the baby with the clubfeet. " I probably should have taken this as a sign the hospital didn't see many clubfoot babies. Hint number 2 that I should have picked up on was the fact that every time she was casted, she would scream a ton. So, long story short, after about 6 weeks of casts, the doctor moved her into the dbb, set at 45 degrees, with the bar as straight as can be. As the other mothers in this group would tell you and told me, was that this was not the way to set up the brace, and screaming her head off for almost two weeks was not normal. Turns out her feet were not fully corrected. So, I go back to the same doctor, another mistake (I'm beginning to lose count of these mistakes), and he kept blaming me for being inept at putting the brace on. He didn't even look at her foot until I made him take the brace off. Then, he realized he was at fault, didn't apologize for insulting us, and then was all set to perform a tenotomy on her. Now, I knew she would probably need a tenotomy in at least one, if not both feet, but a combination of mommy instinct and realizing how many mistakes had been made thus far, I took Maddie out of the office, and NEVER looked back Maddie lost a little correction while waiting a week to be seen by new doctors, on Ponseti's certified list. However, since she wasn't corrected right the first time, I wasn't too worried. Long story, somewhat short, Maddie had her tenotomy, and after a few setbacks, not the docs fault, she will be moving into the shoes tomorrow, and i couldn't be happier with her care. Since you have a heads up on the probability your baby has clubfeet, get a Ponseti doctor lined up for your baby, and keep on this support group. Everyone here is extremely supportive, and between all of our experiences, most if not all of your questions will be answered. If it does turn out your baby does not have clubfeet, the Ponseti doc will tell you, and you can go on your way. Better to be safe and prepared than sorry later. I shall now get off of my soapbox. Good luck, keep us posted, and most of all, enjoy that beautiful baby. - Michele 5/18/02 and Maddie 9/6/05 bcf jennlinmcl39 wrote: Hello all! I have been lurking for a couple of weeks now, and chatting with ee via e-mail. But now it's time to " de-lurk " with a question! At my 21 week ultrasound, they discovered that our baby has bilateral clubfeet. We had three docs in our office look at the results, and had a subsequent u/s, all with the same conclussion. Well, today at my son's two year checkup, we mentioned our diagnosis to his ped, and told her our intent to go to the UofI and Dr. Ponseti for treatment. She told us she thinks in utero diagnosis is faulty, and that she has known people whose babies have been born with no problems at all, or with positional cf instead of " true " cf. She urged us to wait until he was born...and she said even then it can take up to a month to be able to tell for sure!!!! She also said she would send us to Oklahoma City (we're in Tulsa) to an ortho ped there. She says they are " very conservative " in treating cf, and that they rarely perform surgery after casting. When I described the DB bar to her, she told us it was an old-fashioned form of brace. This goes against everything I have read so far! Our ped had never heard of the Ponseti Method, so couldn't comment on this treatment, but was certainly encouraging a wait and see attitude. While I understand we won't know the severity of his cf until he is born, aren't ultrasound diagnosis pretty accurate? Does anyone know of any cases where a pg mom has gotten a false reading? Our ped seemed so nonchalant, it was almost getting my hopes up that my ob/gyns are wrong. HELP!!!! Jennfier Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 I cannot say for certain about all diagnoses via ulatrasound but ours was correct. He was not able to tell the severity before she was born but if it were me, I would still make plans for the Ponseti method. My daughter was treated originally by local " conservative " doctors and they did nothing but torture her with casts that went nowhere on and off for 9 months and then 3 horrific months in an AFO brace. I wish I had gone with the Ponseti method from the beginning and not wasted so much of our time with the other doctors. How many cases of clubfoot has your pediatrician ever seen? I find sometimes it is easy for Doctors to be nonchalant about things when it is not their child. Jenni jennlinmcl39 wrote: Hello all! I have been lurking for a couple of weeks now, and chatting with ee via e-mail. But now it's time to " de-lurk " with a question! At my 21 week ultrasound, they discovered that our baby has bilateral clubfeet. We had three docs in our office look at the results, and had a subsequent u/s, all with the same conclussion. Well, today at my son's two year checkup, we mentioned our diagnosis to his ped, and told her our intent to go to the UofI and Dr. Ponseti for treatment. She told us she thinks in utero diagnosis is faulty, and that she has known people whose babies have been born with no problems at all, or with positional cf instead of " true " cf. She urged us to wait until he was born...and she said even then it can take up to a month to be able to tell for sure!!!! She also said she would send us to Oklahoma City (we're in Tulsa) to an ortho ped there. She says they are " very conservative " in treating cf, and that they rarely perform surgery after casting. When I described the DB bar to her, she told us it was an old-fashioned form of brace. This goes against everything I have read so far! Our ped had never heard of the Ponseti Method, so couldn't comment on this treatment, but was certainly encouraging a wait and see attitude. While I understand we won't know the severity of his cf until he is born, aren't ultrasound diagnosis pretty accurate? Does anyone know of any cases where a pg mom has gotten a false reading? Our ped seemed so nonchalant, it was almost getting my hopes up that my ob/gyns are wrong. HELP!!!! Jennfier Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 In a message dated 1/11/2006 12:20:34 PM Pacific Standard Time, jennmcl39@... writes: > > > She told us she thinks in utero diagnosis is faulty, My Dil ob told her the exact same thing. My granddaughter was born with 2 clubfeet. DeeDee California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 I was amazed about this as well. In the hands of her first Doctor, kelsey would scream from the beginning of casting and would not stop for 2 days after every cast change. When we started seeing Dr. Von Stein, our Ponseti Doctor, Kelsey would just sit and watch her manipulate the foot and never fussed - not one single tear. Dr. Von Stein said that it was because the previous Doctor was forcing her foot up when, without the tenotomy, it could not bend up without causing her a lot of pain. Jenni number23 wrote: screamed and cried at every cast change for six solid months, had to be restrained physically, then cried for days after each time.... It shouldn't be a painful process, not like that, not even close. Everett cried because he didn't shut up for the first four months of his life, ha ha, but casting didn't phase him - that was the whole tongue-tied-starving-to-death issue working there. s. Re: New and confused! When I was about 25 weeks pregnant, I had an ultrasound, and the results showed that the baby might have clubfoot. I don't know why he didn't get a stronger ultrasound to find out for sure, I don't know. Now I didn't know whether to believe him or not because the ultrasound tech was a moron at the office where he worked. She gave us so many false alarms about certain conditions, it wasn't even funny. However, he let me know that this was a possibility. So, I did a lot of research on my own, before I found this group. I was at a teaching hospital that was supposedly well prepared for this sort of thing. When Maddie was born, we discovered they were right. She did have a clubfoot. However, to our surprise, she had a cute little matching set of clubfeet. The residents casted both her legs the very next day. The one big clue I should have picked up on was that the doctors kept bringing residents, and other doctors in to see " the baby with the clubfeet. " I probably should have taken this as a sign the hospital didn't see many clubfoot babies. Hint number 2 that I should have picked up on was the fact that every time she was casted, she would scream a ton. So, long story short, after about 6 weeks of casts, the doctor moved her into the dbb, set at 45 degrees, with the bar as straight as can be. As the other mothers in this group would tell you and told me, was that this was not the way to set up the brace, and screaming her head off for almost two weeks was not normal. Turns out her feet were not fully corrected. So, I go back to the same doctor, another mistake (I'm beginning to lose count of these mistakes), and he kept blaming me for being inept at putting the brace on. He didn't even look at her foot until I made him take the brace off. Then, he realized he was at fault, didn't apologize for insulting us, and then was all set to perform a tenotomy on her. Now, I knew she would probably need a tenotomy in at least one, if not both feet, but a combination of mommy instinct and realizing how many mistakes had been made thus far, I took Maddie out of the office, and NEVER looked back Maddie lost a little correction while waiting a week to be seen by new doctors, on Ponseti's certified list. However, since she wasn't corrected right the first time, I wasn't too worried. Long story, somewhat short, Maddie had her tenotomy, and after a few setbacks, not the docs fault, she will be moving into the shoes tomorrow, and i couldn't be happier with her care. Since you have a heads up on the probability your baby has clubfeet, get a Ponseti doctor lined up for your baby, and keep on this support group. Everyone here is extremely supportive, and between all of our experiences, most if not all of your questions will be answered. If it does turn out your baby does not have clubfeet, the Ponseti doc will tell you, and you can go on your way. Better to be safe and prepared than sorry later. I shall now get off of my soapbox. Good luck, keep us posted, and most of all, enjoy that beautiful baby. - Michele 5/18/02 and Maddie 9/6/05 bcf jennlinmcl39 wrote: Hello all! I have been lurking for a couple of weeks now, and chatting with ee via e-mail. But now it's time to " de-lurk " with a question! At my 21 week ultrasound, they discovered that our baby has bilateral clubfeet. We had three docs in our office look at the results, and had a subsequent u/s, all with the same conclussion. Well, today at my son's two year checkup, we mentioned our diagnosis to his ped, and told her our intent to go to the UofI and Dr. Ponseti for treatment. She told us she thinks in utero diagnosis is faulty, and that she has known people whose babies have been born with no problems at all, or with positional cf instead of " true " cf. She urged us to wait until he was born...and she said even then it can take up to a month to be able to tell for sure!!!! She also said she would send us to Oklahoma City (we're in Tulsa) to an ortho ped there. She says they are " very conservative " in treating cf, and that they rarely perform surgery after casting. When I described the DB bar to her, she told us it was an old-fashioned form of brace. This goes against everything I have read so far! Our ped had never heard of the Ponseti Method, so couldn't comment on this treatment, but was certainly encouraging a wait and see attitude. While I understand we won't know the severity of his cf until he is born, aren't ultrasound diagnosis pretty accurate? Does anyone know of any cases where a pg mom has gotten a false reading? Our ped seemed so nonchalant, it was almost getting my hopes up that my ob/gyns are wrong. HELP!!!! Jennfier Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 , Welcome to the group! It is wonderful you are able to do all the research ahead of time. We had this luxury as well. Our maternal-fetal medicine doctor who performed our 5 u/s told us that u/s is shown to be about 98% effective in detecting clubfoot. As you stated, he noted that the stiffness or severity could not be determined in this manner. I have heard on one mother that was told it was a possiblity and her child was born with normal feet. I would prepare, as you have done, to go to Iowa. Oklahoma may be ok, but if your ped. hasn't heard of the Ponseti Method and she recommends people there, that is not really a great sign. You could always call them also. It is better to be as prepared as you can be. A baby is a big change and to deal with this just adds more excitement to those first few weeks. If the ortho. deals with clubfeet, they will be able to detect it right away. You can wait a few weeks to a month to start treatment however. The brace is the only device that holds the feet as they need to be held to keep the proper correction. Did she say what kind of brace they used? 11/19/04 jennlinmcl39 wrote: Hello all! I have been lurking for a couple of weeks now, and chatting with ee via e-mail. But now it's time to " de-lurk " with a question! At my 21 week ultrasound, they discovered that our baby has bilateral clubfeet. We had three docs in our office look at the results, and had a subsequent u/s, all with the same conclussion. Well, today at my son's two year checkup, we mentioned our diagnosis to his ped, and told her our intent to go to the UofI and Dr. Ponseti for treatment. She told us she thinks in utero diagnosis is faulty, and that she has known people whose babies have been born with no problems at all, or with positional cf instead of " true " cf. She urged us to wait until he was born...and she said even then it can take up to a month to be able to tell for sure!!!! She also said she would send us to Oklahoma City (we're in Tulsa) to an ortho ped there. She says they are " very conservative " in treating cf, and that they rarely perform surgery after casting. When I described the DB bar to her, she told us it was an old-fashioned form of brace. This goes against everything I have read so far! Our ped had never heard of the Ponseti Method, so couldn't comment on this treatment, but was certainly encouraging a wait and see attitude. While I understand we won't know the severity of his cf until he is born, aren't ultrasound diagnosis pretty accurate? Does anyone know of any cases where a pg mom has gotten a false reading? Our ped seemed so nonchalant, it was almost getting my hopes up that my ob/gyns are wrong. HELP!!!! Jennfier Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 Hi , I was told that my baby had bilateral club feet at a 16 week sonogram and it was correct. She was indeed born with bilateral club feet. The appearance of club feet is so distinctive that I cannot imagine that it could be missed at birth or take a month to decide if that is what it truly is. Although all club feet look somewhat (or very much) different, they share certain characteristics. 's two little club feet were even different from each other, with one being more severe and stiff than the other. In babies with club feet, the calf muscles are typically underdeveloped, as well. 's thighs were nice and fat but her calves were a bit scrawny, which I noticed right away. (She was 8 pounds, 6 ounces when born so a nice, big baby overall which made it easier to notice the calves.) Although the research I did during my pg would sometimes overwhelm and upset me to the point that I would need to stop for a time and take a break to just enjoy being a " normal pg lady " , it proved invaluable after she was born. I think you are wise to do some research now. Most general pediatricians don't see enough club feet to really know much about the condition. Remember that this is about a 1 in a 1000 birth defect so not too common. My pediatrician said that he sees about 1 case a year, if that. He did not know about the Ponseti method, either. He doesn't have to, though, since he is a pediatrician and has to know just a little bit about a lot of things. I think he will know more about club feet after having as a patient, though, which is a good thing. Just make sure that the orthopedist is using the Ponseti method of treatment. I asked a lot of questions of the one we saw when was a week old and was satisfied from the answers that he was using the Ponseti method. He also told me that he had been to Iowa for a three day seminar on the method and was trained by Dr. Ponseti. Best of luck to you. This is a journey like any other and, though a hard one, you will meet many wonderful souls along the way whom you would not have known any other way. We are here for you! Carol and , 10-27-05, bcf and absolutely perfect! > Hello all! > > I have been lurking for a couple of weeks now, and chatting with > ee via e-mail. But now it's time to " de-lurk " with a question! > > At my 21 week ultrasound, they discovered that our baby has bilateral > clubfeet. We had three docs in our office look at the results, and had > a subsequent u/s, all with the same conclussion. > > Well, today at my son's two year checkup, we mentioned our diagnosis > to his ped, and told her our intent to go to the UofI and Dr. Ponseti > for treatment. > > She told us she thinks in utero diagnosis is faulty, and that she has > known people whose babies have been born with no problems at all, or > with positional cf instead of " true " cf. > > She urged us to wait until he was born...and she said even then it can > take up to a month to be able to tell for sure!!!! > > She also said she would send us to Oklahoma City (we're in Tulsa) to > an ortho ped there. She says they are " very conservative " in treating > cf, and that they rarely perform surgery after casting. When I > described the DB bar to her, she told us it was an old-fashioned form > of brace. > > This goes against everything I have read so far! > > Our ped had never heard of the Ponseti Method, so couldn't comment on > this treatment, but was certainly encouraging a wait and see attitude. > > While I understand we won't know the severity of his cf until he is > born, aren't ultrasound diagnosis pretty accurate? > > Does anyone know of any cases where a pg mom has gotten a false reading? > > Our ped seemed so nonchalant, it was almost getting my hopes up that > my ob/gyns are wrong. > > HELP!!!! > > Jennfier > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2006 Report Share Posted January 12, 2006 I couldn't agree more. In every case with my children where they have needed to be seen by a specialist, I have done my research and found the doctor I wanted to have my children seen by. I then politely told my Ped. that this is the doctor I would be seeing, not who he had suggested. I am somewhat biased because I work for Washington University School of Medicine so each time it has turned out that the doc I wanted to see was a Wash U doc, but especially in the case of Sammy's foot, I am SO glad that I went with my choice of doctor and saw Dr. Dobbs instead of the ortho my ped. 1st referred me to. When you need to see a specialist I think it pays to be sure you are really going to a SPECIALIST in whatever particular " ailment " is involved. Oh and my pediatrician now asks me " who do you want to see at Wash U? " instead of just referring me to some random person, and I think he is also referring all his clubfoot patients to Dr. Dobbs, yippee! > > > > > > Hello all! > > > > > > I have been lurking for a couple of weeks now, and chatting with > > > ee via e-mail. But now it's time to " de-lurk " with a question! > > > > > > At my 21 week ultrasound, they discovered that our baby has bilateral > > > clubfeet. We had three docs in our office look at the results, and had > > > a subsequent u/s, all with the same conclussion. > > > > > > Well, today at my son's two year checkup, we mentioned our diagnosis > > > to his ped, and told her our intent to go to the UofI and Dr. Ponseti > > > for treatment. > > > > > > She told us she thinks in utero diagnosis is faulty, and that she has > > > known people whose babies have been born with no problems at all, or > > > with positional cf instead of " true " cf. > > > > > > She urged us to wait until he was born...and she said even then it can > > > take up to a month to be able to tell for sure!!!! > > > > > > She also said she would send us to Oklahoma City (we're in Tulsa) to > > > an ortho ped there. She says they are " very conservative " in treating > > > cf, and that they rarely perform surgery after casting. When I > > > described the DB bar to her, she told us it was an old-fashioned form > > > of brace. > > > > > > This goes against everything I have read so far! > > > > > > Our ped had never heard of the Ponseti Method, so couldn't comment on > > > this treatment, but was certainly encouraging a wait and see attitude. > > > > > > While I understand we won't know the severity of his cf until he is > > > born, aren't ultrasound diagnosis pretty accurate? > > > > > > Does anyone know of any cases where a pg mom has gotten a false > reading? > > > > > > Our ped seemed so nonchalant, it was almost getting my hopes up that > > > my ob/gyns are wrong. > > > > > > HELP!!!! > > > > > > Jennfier > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2006 Report Share Posted January 13, 2006 Listen to your instincts - you are the expectant mother and you know best - a special sense is given to woman during this whole child bearing process. with that being said, I will still add my 2cents. b/c you are confused - the best thing to do is contact Dr. Ponseti and discuss it with him. Our Orthopedic Dr. never heard of the Ponseti method but he sent us to a specialist when he saw he couldn't fix the clubfoot without major surgery. Better to be conservative and explore prior to birth. We know one little tyke that was casted when he was 2 days old b/c they acted on the ultrasound pictures. All the best, Mordechai (father of Yehoshua Yaakov 6 months) > > Hello all! > > I have been lurking for a couple of weeks now, and chatting with > ee via e-mail. But now it's time to " de-lurk " with a question! > > At my 21 week ultrasound, they discovered that our baby has bilateral > clubfeet. We had three docs in our office look at the results, and had > a subsequent u/s, all with the same conclussion. > > Well, today at my son's two year checkup, we mentioned our diagnosis > to his ped, and told her our intent to go to the UofI and Dr. Ponseti > for treatment. > > She told us she thinks in utero diagnosis is faulty, and that she has > known people whose babies have been born with no problems at all, or > with positional cf instead of " true " cf. > > She urged us to wait until he was born...and she said even then it can > take up to a month to be able to tell for sure!!!! > > She also said she would send us to Oklahoma City (we're in Tulsa) to > an ortho ped there. She says they are " very conservative " in treating > cf, and that they rarely perform surgery after casting. When I > described the DB bar to her, she told us it was an old-fashioned form > of brace. > > This goes against everything I have read so far! > > Our ped had never heard of the Ponseti Method, so couldn't comment on > this treatment, but was certainly encouraging a wait and see attitude. > > While I understand we won't know the severity of his cf until he is > born, aren't ultrasound diagnosis pretty accurate? > > Does anyone know of any cases where a pg mom has gotten a false reading? > > Our ped seemed so nonchalant, it was almost getting my hopes up that > my ob/gyns are wrong. > > HELP!!!! > > Jennfier > Quote Link to comment Share on other sites More sharing options...
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