Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 > (His dad went with him, but when I saw the foot I was shocked to see > which angle the doctor put the foot in) I want to say that some of the casts can look very akward and shocking - horrible in fact! You can see a good example of the odd angles here: http://members.aol.com/vc11/week1.htm Also, some babies just don't like having their feet touched - especially after 2 weeks of casting! - because the skin becomes so tender and hypersensitive. Consider if maybe this was the case. And dont feel bad about questioning the doctor on it seeming to hurt him > > My question to all of this is: Is it worth it? > How much would the whole thing cost (casting, shoes etc...) Yes, it really is worth it! As for the cost, I think it usually runs about $2000 or so; BUT see if the doctor will make an acception and give you a discount since you are having to pay out of pocket. Some doctors will do that, you just need to explain the sittuation to them. > If we have doubts with the doctor what can we do? > Could we bring the Ponseti Protocol to another orthopedic and ask > him to follow it? Would he be able to perform a good job without ever > being in Iowa with Dr. Ponseti? If you have doubts, do not be afraid to see a third opinion. If cost is an issue, take photos of the cast, explain the treatment so far and the sittuation and send it to Dr Ponseti at ignacio-ponseti@... . He works Monday, Wednesday and Friday and will usually respond within a week. No, you can't bring the Ponseti Protocol to an untrained ortho. First, because if they do not believe in it they are likely to tell you the will do it and not. Also, even if they are willing, if they have not been properly trained by another Ponseti doctor (it does not necessarily have to be Dr Ponseti) then there is a great risk of them doing it wrong and causing more dammage to the foot. > should we just give up and let them do the conventional way? > I'm from Germany and I don't know this system very well but > maybe somebody could give me an advice/ encouragement?! Don't give up! If you are willing to go the extra mile for your son, you will be able to get this done for him and you will be very happy that he did not undergo surgery. I understand that it can be very hard to have to deal with the beuracracy - especially being from a different country! But, if you can persevere and seek the help of the doctor's office and other people who have fought that fight (I do believe there are some here who have) then you should be able to get thru this. Last of all, sending big hugs to you! Many of us here know what a very tough and trying time this is for you - you are not alone! Angel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 , We basically paid for all the casts for our daughter Rose. I have insurance but each cast was $365 and the insurance only allowed a charge of $164. So, after my 50% co-pay, the insurance paid $82 per cast. That dosn't count the travel expenses to get to the Dr to boot. Yes, I would say it is really worth it and yes, the foot needs to be turned at that impossible angle. I am not the dedicated Ponseti fan that you will find here, but I am sure it has to be much better than surgery. Our Dr. told us that he has been treating club foot for 20+ years and has only been practicing the Ponseti method for about 4 years. He says he wishes he could go back and redo all the surgeries he has done with this non-surgical method. Besides, from what I have been reading about the surgeries, you still end up with casts and a foot abduction brace, besides having PT and scars. Good luck with your treatment and by all means, pay whatever it costs! It is totally worth it to see a Dr that understands and believes in this nonsurgical method. Robin & Rose 3/12/03 Right club foot. claugauga claugauga@...> wrote: Kody now 3 1/2 month After your help to find a doctor in S-California we have a pile of problems coming on to us: We went to Dr. King in Tarzana on April 21st covered by our Insurance (healthnet Med Group University California Irvine) as getting a second Opinion. That day we had a very good impression of the Doctor and he said that Kody will need only 6 cast to be corrected. We went that day ahead and let him do the first cast on our cost (since we drove 1 1/2 hours to get there). The doctors assistent called the Medical Group to ask if they can be single contracted with the doctor in Tarzana for this case. The people from the doctors office said that this should not be a problem and that they are sure they will do it. The result should have be there on the following Friday which it wasen't (What a surprise). Anyway Kody left this cast on for 2 weeks (What a waste of time) and still the medical group didn't make a descision. Finally we went ahead and had the cast change on our own expense. The medical group denied on 5/6/04. And I went ahead to do an expedited appeal with the Healthinsurance. They already told me it's not going to be considered expedited. So it can take up to thirty days!! In that time he would be basically done with the casting! When we went to change the cast the second time it seemed like Kody was in pain when the doctor manipulated the foot. So we are not even sure anymore if Dr. king is completely sure what he is doing. (His dad went with him, but when I saw the foot I was shocked to see which angle the doctor put the foot in) My question to all of this is: Is it worth it? How much would the whole thing cost (casting, shoes etc...) If we have doubts with the doctor what can we do? Could we bring the Ponseti Protocol to another orthopedic and ask him to follow it? Would he be able to perform a good job without ever being in Iowa with Dr. Ponseti? should we just give up and let them do the conventional way? I'm from Germany and I don't know this system very well but maybe somebody could give me an advice/ encouragement?! Thanks a lot and Kody 2/1/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 , I'm sorry that you're having so many difficulties with Kody's treatment and insurance. The insurance system is a real nightmare, isn't it?! Dessi seems to be our resident insurance expert for the state of California- hopefully she's already been in contact with you, or will see your post soon! As far as the casting goes, please check out the photos in the files section, to familiarize yourself with what the casts should look like. There's also a parents' checklist at http://pages.ivillage.com/ponseti_links that you can use to " interview " doctors to help you determine if they're using the standard Ponseti protocol. There have been some good reports about Weinert, but also some conflicting reports- at this time, I think we're still unclear as to whether he's following the protocol 100% for all patients, but Antoinette had interviewed him and felt that he would be for her baby (who is not born yet). You can search the archived messages for those posts concerning Weinert. I hope this information helps- and I hope you'll keep us posted on Kody's progress! Regards, & (3-16-00) left clubfoot, switched to Ponseti method at 4 mo. old > Kody now 3 1/2 month > After your help to find a doctor in S-California we have a pile > of problems coming on to us: > > We went to Dr. King in Tarzana on April 21st covered by our > Insurance (healthnet Med Group University California Irvine) as > getting a second Opinion. > That day we had a very good impression of the Doctor and he said > that Kody will need only 6 cast to be corrected. > We went that day ahead and let him do the first cast on our cost > (since we drove 1 1/2 hours to get there). > The doctors assistent called the Medical Group to ask if they can be > single contracted with the doctor in Tarzana for this case. > The people from the doctors office said that this should not be a > problem and that they are sure they will do it. The result should > have > be there on the following Friday which it wasen't (What a surprise). > Anyway Kody left this cast on for 2 weeks (What a waste of time) and > still the medical group didn't make a descision. Finally we went > ahead and had the cast change on our own expense. The medical group > denied on 5/6/04. And I went ahead to do an expedited appeal with the > Healthinsurance. They already told me it's not going to be considered > expedited. So it can take up to thirty days!! In that time he would > be basically done with the casting! > > When we went to change the cast the second time it seemed like Kody > was in pain when the doctor manipulated the foot. So we are not > even sure anymore if Dr. king is completely sure what he is doing. > (His dad went with him, but when I saw the foot I was shocked to see > which angle the doctor put the foot in) > > My question to all of this is: Is it worth it? > How much would the whole thing cost (casting, shoes etc...) > If we have doubts with the doctor what can we do? > Could we bring the Ponseti Protocol to another orthopedic and ask > him to follow it? Would he be able to perform a good job without ever > being in Iowa with Dr. Ponseti? > should we just give up and let them do the conventional way? > I'm from Germany and I don't know this system very well but > maybe somebody could give me an advice/ encouragement?! > > Thanks a lot > > and Kody 2/1/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 , I'm sorry that you're having so many difficulties with Kody's treatment and insurance. The insurance system is a real nightmare, isn't it?! Dessi seems to be our resident insurance expert for the state of California- hopefully she's already been in contact with you, or will see your post soon! As far as the casting goes, please check out the photos in the files section, to familiarize yourself with what the casts should look like. There's also a parents' checklist at http://pages.ivillage.com/ponseti_links that you can use to " interview " doctors to help you determine if they're using the standard Ponseti protocol. There have been some good reports about Weinert, but also some conflicting reports- at this time, I think we're still unclear as to whether he's following the protocol 100% for all patients, but Antoinette had interviewed him and felt that he would be for her baby (who is not born yet). You can search the archived messages for those posts concerning Weinert. I hope this information helps- and I hope you'll keep us posted on Kody's progress! Regards, & (3-16-00) left clubfoot, switched to Ponseti method at 4 mo. old > Kody now 3 1/2 month > After your help to find a doctor in S-California we have a pile > of problems coming on to us: > > We went to Dr. King in Tarzana on April 21st covered by our > Insurance (healthnet Med Group University California Irvine) as > getting a second Opinion. > That day we had a very good impression of the Doctor and he said > that Kody will need only 6 cast to be corrected. > We went that day ahead and let him do the first cast on our cost > (since we drove 1 1/2 hours to get there). > The doctors assistent called the Medical Group to ask if they can be > single contracted with the doctor in Tarzana for this case. > The people from the doctors office said that this should not be a > problem and that they are sure they will do it. The result should > have > be there on the following Friday which it wasen't (What a surprise). > Anyway Kody left this cast on for 2 weeks (What a waste of time) and > still the medical group didn't make a descision. Finally we went > ahead and had the cast change on our own expense. The medical group > denied on 5/6/04. And I went ahead to do an expedited appeal with the > Healthinsurance. They already told me it's not going to be considered > expedited. So it can take up to thirty days!! In that time he would > be basically done with the casting! > > When we went to change the cast the second time it seemed like Kody > was in pain when the doctor manipulated the foot. So we are not > even sure anymore if Dr. king is completely sure what he is doing. > (His dad went with him, but when I saw the foot I was shocked to see > which angle the doctor put the foot in) > > My question to all of this is: Is it worth it? > How much would the whole thing cost (casting, shoes etc...) > If we have doubts with the doctor what can we do? > Could we bring the Ponseti Protocol to another orthopedic and ask > him to follow it? Would he be able to perform a good job without ever > being in Iowa with Dr. Ponseti? > should we just give up and let them do the conventional way? > I'm from Germany and I don't know this system very well but > maybe somebody could give me an advice/ encouragement?! > > Thanks a lot > > and Kody 2/1/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 , I'm sorry that you're having so many difficulties with Kody's treatment and insurance. The insurance system is a real nightmare, isn't it?! Dessi seems to be our resident insurance expert for the state of California- hopefully she's already been in contact with you, or will see your post soon! As far as the casting goes, please check out the photos in the files section, to familiarize yourself with what the casts should look like. There's also a parents' checklist at http://pages.ivillage.com/ponseti_links that you can use to " interview " doctors to help you determine if they're using the standard Ponseti protocol. There have been some good reports about Weinert, but also some conflicting reports- at this time, I think we're still unclear as to whether he's following the protocol 100% for all patients, but Antoinette had interviewed him and felt that he would be for her baby (who is not born yet). You can search the archived messages for those posts concerning Weinert. I hope this information helps- and I hope you'll keep us posted on Kody's progress! Regards, & (3-16-00) left clubfoot, switched to Ponseti method at 4 mo. old > Kody now 3 1/2 month > After your help to find a doctor in S-California we have a pile > of problems coming on to us: > > We went to Dr. King in Tarzana on April 21st covered by our > Insurance (healthnet Med Group University California Irvine) as > getting a second Opinion. > That day we had a very good impression of the Doctor and he said > that Kody will need only 6 cast to be corrected. > We went that day ahead and let him do the first cast on our cost > (since we drove 1 1/2 hours to get there). > The doctors assistent called the Medical Group to ask if they can be > single contracted with the doctor in Tarzana for this case. > The people from the doctors office said that this should not be a > problem and that they are sure they will do it. The result should > have > be there on the following Friday which it wasen't (What a surprise). > Anyway Kody left this cast on for 2 weeks (What a waste of time) and > still the medical group didn't make a descision. Finally we went > ahead and had the cast change on our own expense. The medical group > denied on 5/6/04. And I went ahead to do an expedited appeal with the > Healthinsurance. They already told me it's not going to be considered > expedited. So it can take up to thirty days!! In that time he would > be basically done with the casting! > > When we went to change the cast the second time it seemed like Kody > was in pain when the doctor manipulated the foot. So we are not > even sure anymore if Dr. king is completely sure what he is doing. > (His dad went with him, but when I saw the foot I was shocked to see > which angle the doctor put the foot in) > > My question to all of this is: Is it worth it? > How much would the whole thing cost (casting, shoes etc...) > If we have doubts with the doctor what can we do? > Could we bring the Ponseti Protocol to another orthopedic and ask > him to follow it? Would he be able to perform a good job without ever > being in Iowa with Dr. Ponseti? > should we just give up and let them do the conventional way? > I'm from Germany and I don't know this system very well but > maybe somebody could give me an advice/ encouragement?! > > Thanks a lot > > and Kody 2/1/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 Ditto. I'll have to say I agree with all of Angel's points. Also if you do fight this with insurance and they agree to cover it they should go back and cover what you paid for, right? Is there a Shriner's Hospital within a few hour drive from you that has a Ponseti Dr? Good luck to you. Pam and (8-12-01) > > > (His dad went with him, but when I saw the foot I was shocked to > see > > which angle the doctor put the foot in) > > I want to say that some of the casts can look very akward and > shocking - horrible in fact! You can see a good example of the odd > angles here: http://members.aol.com/vc11/week1.htm Also, some babies > just don't like having their feet touched - especially after 2 weeks > of casting! - because the skin becomes so tender and hypersensitive. > Consider if maybe this was the case. And dont feel bad about > questioning the doctor on it seeming to hurt him > > > > > My question to all of this is: Is it worth it? > > How much would the whole thing cost (casting, shoes etc...) > > Yes, it really is worth it! As for the cost, I think it usually runs > about $2000 or so; BUT see if the doctor will make an acception and > give you a discount since you are having to pay out of pocket. Some > doctors will do that, you just need to explain the sittuation to them. > > > > If we have doubts with the doctor what can we do? > > Could we bring the Ponseti Protocol to another orthopedic and ask > > him to follow it? Would he be able to perform a good job without > ever > > being in Iowa with Dr. Ponseti? > > If you have doubts, do not be afraid to see a third opinion. If cost > is an issue, take photos of the cast, explain the treatment so far > and the sittuation and send it to Dr Ponseti at > ignacio-ponseti@u... . He works Monday, Wednesday and Friday > and will usually respond within a week. > > No, you can't bring the Ponseti Protocol to an untrained ortho. > First, because if they do not believe in it they are likely to tell > you the will do it and not. Also, even if they are willing, if they > have not been properly trained by another Ponseti doctor (it does not > necessarily have to be Dr Ponseti) then there is a great risk of them > doing it wrong and causing more dammage to the foot. > > > > should we just give up and let them do the conventional way? > > I'm from Germany and I don't know this system very well but > > maybe somebody could give me an advice/ encouragement?! > > Don't give up! If you are willing to go the extra mile for your son, > you will be able to get this done for him and you will be very happy > that he did not undergo surgery. I understand that it can be very > hard to have to deal with the beuracracy - especially being from a > different country! But, if you can persevere and seek the help of > the doctor's office and other people who have fought that fight (I do > believe there are some here who have) then you should be able to get > thru this. > > Last of all, sending big hugs to you! Many of us here know what a > very tough and trying time this is for you - you are not alone! > > Angel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 Ditto. I'll have to say I agree with all of Angel's points. Also if you do fight this with insurance and they agree to cover it they should go back and cover what you paid for, right? Is there a Shriner's Hospital within a few hour drive from you that has a Ponseti Dr? Good luck to you. Pam and (8-12-01) > > > (His dad went with him, but when I saw the foot I was shocked to > see > > which angle the doctor put the foot in) > > I want to say that some of the casts can look very akward and > shocking - horrible in fact! You can see a good example of the odd > angles here: http://members.aol.com/vc11/week1.htm Also, some babies > just don't like having their feet touched - especially after 2 weeks > of casting! - because the skin becomes so tender and hypersensitive. > Consider if maybe this was the case. And dont feel bad about > questioning the doctor on it seeming to hurt him > > > > > My question to all of this is: Is it worth it? > > How much would the whole thing cost (casting, shoes etc...) > > Yes, it really is worth it! As for the cost, I think it usually runs > about $2000 or so; BUT see if the doctor will make an acception and > give you a discount since you are having to pay out of pocket. Some > doctors will do that, you just need to explain the sittuation to them. > > > > If we have doubts with the doctor what can we do? > > Could we bring the Ponseti Protocol to another orthopedic and ask > > him to follow it? Would he be able to perform a good job without > ever > > being in Iowa with Dr. Ponseti? > > If you have doubts, do not be afraid to see a third opinion. If cost > is an issue, take photos of the cast, explain the treatment so far > and the sittuation and send it to Dr Ponseti at > ignacio-ponseti@u... . He works Monday, Wednesday and Friday > and will usually respond within a week. > > No, you can't bring the Ponseti Protocol to an untrained ortho. > First, because if they do not believe in it they are likely to tell > you the will do it and not. Also, even if they are willing, if they > have not been properly trained by another Ponseti doctor (it does not > necessarily have to be Dr Ponseti) then there is a great risk of them > doing it wrong and causing more dammage to the foot. > > > > should we just give up and let them do the conventional way? > > I'm from Germany and I don't know this system very well but > > maybe somebody could give me an advice/ encouragement?! > > Don't give up! If you are willing to go the extra mile for your son, > you will be able to get this done for him and you will be very happy > that he did not undergo surgery. I understand that it can be very > hard to have to deal with the beuracracy - especially being from a > different country! But, if you can persevere and seek the help of > the doctor's office and other people who have fought that fight (I do > believe there are some here who have) then you should be able to get > thru this. > > Last of all, sending big hugs to you! Many of us here know what a > very tough and trying time this is for you - you are not alone! > > Angel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 Ditto. I'll have to say I agree with all of Angel's points. Also if you do fight this with insurance and they agree to cover it they should go back and cover what you paid for, right? Is there a Shriner's Hospital within a few hour drive from you that has a Ponseti Dr? Good luck to you. Pam and (8-12-01) > > > (His dad went with him, but when I saw the foot I was shocked to > see > > which angle the doctor put the foot in) > > I want to say that some of the casts can look very akward and > shocking - horrible in fact! You can see a good example of the odd > angles here: http://members.aol.com/vc11/week1.htm Also, some babies > just don't like having their feet touched - especially after 2 weeks > of casting! - because the skin becomes so tender and hypersensitive. > Consider if maybe this was the case. And dont feel bad about > questioning the doctor on it seeming to hurt him > > > > > My question to all of this is: Is it worth it? > > How much would the whole thing cost (casting, shoes etc...) > > Yes, it really is worth it! As for the cost, I think it usually runs > about $2000 or so; BUT see if the doctor will make an acception and > give you a discount since you are having to pay out of pocket. Some > doctors will do that, you just need to explain the sittuation to them. > > > > If we have doubts with the doctor what can we do? > > Could we bring the Ponseti Protocol to another orthopedic and ask > > him to follow it? Would he be able to perform a good job without > ever > > being in Iowa with Dr. Ponseti? > > If you have doubts, do not be afraid to see a third opinion. If cost > is an issue, take photos of the cast, explain the treatment so far > and the sittuation and send it to Dr Ponseti at > ignacio-ponseti@u... . He works Monday, Wednesday and Friday > and will usually respond within a week. > > No, you can't bring the Ponseti Protocol to an untrained ortho. > First, because if they do not believe in it they are likely to tell > you the will do it and not. Also, even if they are willing, if they > have not been properly trained by another Ponseti doctor (it does not > necessarily have to be Dr Ponseti) then there is a great risk of them > doing it wrong and causing more dammage to the foot. > > > > should we just give up and let them do the conventional way? > > I'm from Germany and I don't know this system very well but > > maybe somebody could give me an advice/ encouragement?! > > Don't give up! If you are willing to go the extra mile for your son, > you will be able to get this done for him and you will be very happy > that he did not undergo surgery. I understand that it can be very > hard to have to deal with the beuracracy - especially being from a > different country! But, if you can persevere and seek the help of > the doctor's office and other people who have fought that fight (I do > believe there are some here who have) then you should be able to get > thru this. > > Last of all, sending big hugs to you! Many of us here know what a > very tough and trying time this is for you - you are not alone! > > Angel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Thank you so much Louisa. He is much better this evening and is already napping pretty well. He wakes up with little fits and starts, I think b/c he is remembering the ordeal but has eaten well and I think we may make it through. He always hated having his legs straightened before the cast. When we changed his diaper, we had to hold his legs to make sure his turned in feet did not get into the poop an dhe disliked that before. I am pretty sure his feet have good circulation and I watched the cast application as close as I could. I am thankful he will not remember this later in life. Luckily, doctor says his foot is pretty flexible so maybe that will make it easier. I thank you very much for your kind input, it is much appreciated. > > My six day old son was just casted bilaterally by a Ponseti- > approved > > doctor. He is very uncomfortable but not in pain. However, we > are > > having trouble soothing him with the usual methods and he is pretty > > unconsolable at times. Did you veterans deal wihth this and if so, > > what did you do? Will he just have to get used to it? Will he > > eventually? It's breaking our hearts to see him so unhappy. > > > > Thanks in advance for your advice. > > > > Gratefully > > > > Antoinette Hewitt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Thank you so much Louisa. He is much better this evening and is already napping pretty well. He wakes up with little fits and starts, I think b/c he is remembering the ordeal but has eaten well and I think we may make it through. He always hated having his legs straightened before the cast. When we changed his diaper, we had to hold his legs to make sure his turned in feet did not get into the poop an dhe disliked that before. I am pretty sure his feet have good circulation and I watched the cast application as close as I could. I am thankful he will not remember this later in life. Luckily, doctor says his foot is pretty flexible so maybe that will make it easier. I thank you very much for your kind input, it is much appreciated. > > My six day old son was just casted bilaterally by a Ponseti- > approved > > doctor. He is very uncomfortable but not in pain. However, we > are > > having trouble soothing him with the usual methods and he is pretty > > unconsolable at times. Did you veterans deal wihth this and if so, > > what did you do? Will he just have to get used to it? Will he > > eventually? It's breaking our hearts to see him so unhappy. > > > > Thanks in advance for your advice. > > > > Gratefully > > > > Antoinette Hewitt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Thank you so much Louisa. He is much better this evening and is already napping pretty well. He wakes up with little fits and starts, I think b/c he is remembering the ordeal but has eaten well and I think we may make it through. He always hated having his legs straightened before the cast. When we changed his diaper, we had to hold his legs to make sure his turned in feet did not get into the poop an dhe disliked that before. I am pretty sure his feet have good circulation and I watched the cast application as close as I could. I am thankful he will not remember this later in life. Luckily, doctor says his foot is pretty flexible so maybe that will make it easier. I thank you very much for your kind input, it is much appreciated. > > My six day old son was just casted bilaterally by a Ponseti- > approved > > doctor. He is very uncomfortable but not in pain. However, we > are > > having trouble soothing him with the usual methods and he is pretty > > unconsolable at times. Did you veterans deal wihth this and if so, > > what did you do? Will he just have to get used to it? Will he > > eventually? It's breaking our hearts to see him so unhappy. > > > > Thanks in advance for your advice. > > > > Gratefully > > > > Antoinette Hewitt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Thanks so much, he is much better this evening and has slept and eaten so I think I uttered the words of a panicked, guilt-stricken, first time mom. He cries out a bit in his sleep but I think he is just remembering the most recent experience. He is sure to miss bending his legs but I am hopeful that the worst is over. I will keep your advice in mind and watch him closely. Thanks again, I truly appreciate it. > it is possible, even with a Ponseti technique, etc., that the cast (s) were applied improperly; perhaps too tight, or maybe a wad of batting is pressing in to a spot making it sore. Have you checked his toes? Are they of good color and circulation? If he is as inconsolable as you say you might consider taking him to the ER or something and having the casts removed. Dr. Ponseti himself (with helpers of course) applied one cast too tight to my baby last year and he was definately in pain. You know your baby better than anyone, what do you think? Is something wrong? If you think so, then better safe than sorry. > > Another time years ago my other son had cast issues, the dr. said it was the rash he had on his face making him cry. (new born baby rash) We knew it was more serious than that, we weren't idiots but evidently that dr. was cuz we took the cast off at home later than everning and found my baby's leg was all purple and swollen up something terible. > s. > > Help! > > > My six day old son was just casted bilaterally by a Ponseti- approved > doctor. He is very uncomfortable but not in pain. However, we are > having trouble soothing him with the usual methods and he is pretty > unconsolable at times. Did you veterans deal wihth this and if so, > what did you do? Will he just have to get used to it? Will he > eventually? It's breaking our hearts to see him so unhappy. > > Thanks in advance for your advice. > > Gratefully > > Antoinette Hewitt > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2009 Report Share Posted June 23, 2009 I am in upstate NY, near Syracuse and I am looking for a doctor that knows about this diet and can help me more. I have been in relapse for almost two years now and its slowly killing me, mentally, physically and emotionally. I have had CD for 13 years and have had 13 surgeries, so i dont want another. Please help if you can. write back or call me please at . Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2009 Report Share Posted June 23, 2009 , are you trying Low Dose Naltrexone? It sounds very promising as a treatment for Crohn’s. I just started it as a cream (recommended for people with active CD). Here’s where you can find information on LDN: www.LowDoseNaltrexone.org Are you on the SCD? Are you taking B12 shots? Are you staying hydrated? Do you have food sensitivities? I hope you can find a knowledgeable doctor. The doctor I found to prescribe me LDN has heard of the SCD (first doctor I’ve been to out of 4 who has even heard of the SCD). He wasn’t an SCD doctor per se, but he knew of it. That’s unheard of in my CD experience here in Houston. If you follow the SCD to the letter, get rid of every illegal, your gut will begin to heal. The SCD saved my life, literally. After the intro diet, follow the next stages found at www.PecanBread.com It is a website for kids following the SCD. And here is where I learned of my B12 deficiency: http://health.groups.yahoo.com/group/scdinfo/message/29153 Hope this info helps. Carol CD for 21 yrs SCD 4.5 yrs No meds except B12 shots & LDN cream 3 mg. From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of dcliffy I am in upstate NY, near Syracuse and I am looking for a doctor that knows about this diet and can help me more. I have been in relapse for almost two years now and its slowly killing me, mentally, physically and emotionally. I have had CD for 13 years and have had 13 surgeries, so i dont want another. Please help if you can. write back or call me please at . Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2009 Report Share Posted June 23, 2009 , I’m further west in NYS – ton/Youngstown/Niagara Falls area – which as I recall would be about a 2 ½ hour drive for you (my husband goes to a post-polio expert in Syracuse a couple of times a year). I have a gastroenterologist here (Niagara Falls) who is both open to me being on the SCD and who has prescribed LDN for me. He hadn’t heard of LDN. I told him about it, gave him some info, also told him about the diet, that I wanted to do them together (he knew I’m very drug sensitive, hadn’t reacted well to the Crohn’s drugs I’ve tried, except prednisone, which one can’t take forever! I may be his only patient on SCD and LDN, unless he’s put other people on them since. I’m sort of his experiment to see, in a year (now somewhat less) what my next colonoscopy looks like. The SCD and LDN together are doing wonders for me! You may write me offlist if you wish and I’ll tell you more.  I have no idea if he is taking new patients. He’s part of a gastroenterology clinic. n From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of dcliffy Sent: Tuesday, June 23, 2009 12:19 PM To: BTVC-SCD Subject: help! I am in upstate NY, near Syracuse and I am looking for a doctor that knows about this diet and can help me more. I have been in relapse for almost two years now and its slowly killing me, mentally, physically and emotionally. I have had CD for 13 years and have had 13 surgeries, so i dont want another. Please help if you can. write back or call me please at . Thank you Quote Link to comment Share on other sites More sharing options...
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