Guest guest Posted August 29, 2004 Report Share Posted August 29, 2004 Don't think that she will definitely need surgery. I can't tell you how many of us were told that here. Probably 80-90% (hey, maybe we need a poll on that one!) until we found the correct Dr. The first Dr. my son saw said we'll see how many surgeries and the second said multiple (probably five to seven) surgeries. His current Dr. (and the one he has seen from 2 weeks until now, he's three-years-old) said we can fix this without surgery. And he did. He did have the bilateral tenotomy which is a very minor surgery not even requiring stitches. Where do you live? Maybe someone here has experience with a Dr. in your area. Pam and (8-12-01) > > > Hi everyone, I am a new member the the group and just wanted to > > give > > > some background. My daughter Addisyn is just over 2 mos old and > > was > > > born w/ bilateral club feet. She has been in casts since she > was 2 > > > wks. We had the tenotomy done 3 wks ago this Monday and we just > > got > > > into the DBB today. If anyone has some tips about the DBB or > > things > > > to look for it would be greatly appreciated. This is definately > a > > > huge adjustment from the freedom she had in the casts!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2004 Report Share Posted August 29, 2004 Don't think that she will definitely need surgery. I can't tell you how many of us were told that here. Probably 80-90% (hey, maybe we need a poll on that one!) until we found the correct Dr. The first Dr. my son saw said we'll see how many surgeries and the second said multiple (probably five to seven) surgeries. His current Dr. (and the one he has seen from 2 weeks until now, he's three-years-old) said we can fix this without surgery. And he did. He did have the bilateral tenotomy which is a very minor surgery not even requiring stitches. Where do you live? Maybe someone here has experience with a Dr. in your area. Pam and (8-12-01) > > > Hi everyone, I am a new member the the group and just wanted to > > give > > > some background. My daughter Addisyn is just over 2 mos old and > > was > > > born w/ bilateral club feet. She has been in casts since she > was 2 > > > wks. We had the tenotomy done 3 wks ago this Monday and we just > > got > > > into the DBB today. If anyone has some tips about the DBB or > > things > > > to look for it would be greatly appreciated. This is definately > a > > > huge adjustment from the freedom she had in the casts!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2004 Report Share Posted August 29, 2004 I'm sorry to hear Addisyn is having trouble with her brace, but what I really find troubling was your doctor's attitude of " We'll see how it goes.....give it a try for a week....... " That sounds like such a devil-may-care opinion he has of your child, or at least the remarks of a doctor who is neither skilled nor qualified to treat your baby's feet. There should be no question as to whether she is ready or not, this isn't poke-n-hope, it's pretty black & white. Please follow the other's advice and look for another opinion. It's true, many babies, even toddlers, here who have been doomed to a sentence of surgery have found wonderful non-surgical correction via the Ponseti Method. I waited too long before questioning my 1st son's doctor and seeking better treatment options, I hope someone, anyone, as many people as possible can learn from my mistake. Best Wishes, s. Re: New member Don't think that she will definitely need surgery. I can't tell you how many of us were told that here. Probably 80-90% (hey, maybe we need a poll on that one!) until we found the correct Dr. The first Dr. my son saw said we'll see how many surgeries and the second said multiple (probably five to seven) surgeries. His current Dr. (and the one he has seen from 2 weeks until now, he's three-years-old) said we can fix this without surgery. And he did. He did have the bilateral tenotomy which is a very minor surgery not even requiring stitches. Where do you live? Maybe someone here has experience with a Dr. in your area. Pam and (8-12-01) > > > Hi everyone, I am a new member the the group and just wanted to > > give > > > some background. My daughter Addisyn is just over 2 mos old and > > was > > > born w/ bilateral club feet. She has been in casts since she > was 2 > > > wks. We had the tenotomy done 3 wks ago this Monday and we just > > got > > > into the DBB today. If anyone has some tips about the DBB or > > things > > > to look for it would be greatly appreciated. This is definately > a > > > huge adjustment from the freedom she had in the casts!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2004 Report Share Posted August 29, 2004 I'm sorry to hear Addisyn is having trouble with her brace, but what I really find troubling was your doctor's attitude of " We'll see how it goes.....give it a try for a week....... " That sounds like such a devil-may-care opinion he has of your child, or at least the remarks of a doctor who is neither skilled nor qualified to treat your baby's feet. There should be no question as to whether she is ready or not, this isn't poke-n-hope, it's pretty black & white. Please follow the other's advice and look for another opinion. It's true, many babies, even toddlers, here who have been doomed to a sentence of surgery have found wonderful non-surgical correction via the Ponseti Method. I waited too long before questioning my 1st son's doctor and seeking better treatment options, I hope someone, anyone, as many people as possible can learn from my mistake. Best Wishes, s. Re: New member Don't think that she will definitely need surgery. I can't tell you how many of us were told that here. Probably 80-90% (hey, maybe we need a poll on that one!) until we found the correct Dr. The first Dr. my son saw said we'll see how many surgeries and the second said multiple (probably five to seven) surgeries. His current Dr. (and the one he has seen from 2 weeks until now, he's three-years-old) said we can fix this without surgery. And he did. He did have the bilateral tenotomy which is a very minor surgery not even requiring stitches. Where do you live? Maybe someone here has experience with a Dr. in your area. Pam and (8-12-01) > > > Hi everyone, I am a new member the the group and just wanted to > > give > > > some background. My daughter Addisyn is just over 2 mos old and > > was > > > born w/ bilateral club feet. She has been in casts since she > was 2 > > > wks. We had the tenotomy done 3 wks ago this Monday and we just > > got > > > into the DBB today. If anyone has some tips about the DBB or > > things > > > to look for it would be greatly appreciated. This is definately > a > > > huge adjustment from the freedom she had in the casts!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 I really hope we don't have to go the surgery route, we have an apt today at 2:40 to go back in and put casts back on. Dr Schwend did say he had another little boy that was as bad as Addisyn if not worse and he kept him from having surgery. He is pretty conservative when it comes to surgery so I know he will do whatever he can to keep that from happening. I am the one who thinks she is going to have surgery. I guess I just want her feet to change within the normal perameters of treatment and that just isn't possible. She'll have to do much more casting than the 6-8 wks. Her feet look great from what they were when she was born, it's just the creases she has on the base of her foot are still really bad. We live in New Mexico and we are going to the best doctor in town. He has gone to Dr Ponseti's seminars and is certified so I do trust him. In fact if he questions any part of treatment for a child he has contacted Ponseti in the past to get his opinion. I just think he doesn't want to give us false hope that surgery is totally out of the question. Anyway, we will let you all know how it goes and thanks for the support, it is much needed!! Mia > > > > Hi everyone, I am a new member the the group and just wanted to > > > give > > > > some background. My daughter Addisyn is just over 2 mos old > and > > > was > > > > born w/ bilateral club feet. She has been in casts since she > > was 2 > > > > wks. We had the tenotomy done 3 wks ago this Monday and we > just > > > got > > > > into the DBB today. If anyone has some tips about the DBB or > > > things > > > > to look for it would be greatly appreciated. This is > definately > > a > > > > huge adjustment from the freedom she had in the casts!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 Hi Mia, I hope you can write back after your appt and tell us what he said. I am sorry the bar is not working for you yet. Think positive. It is good to hear your dr. is conservative with surgery. Louisa 6-27-99 Zoe 2-22-04 RCF FAB 18/7 > > > > > Hi everyone, I am a new member the the group and just wanted > to > > > > give > > > > > some background. My daughter Addisyn is just over 2 mos old > > and > > > > was > > > > > born w/ bilateral club feet. She has been in casts since > she > > > was 2 > > > > > wks. We had the tenotomy done 3 wks ago this Monday and we > > just > > > > got > > > > > into the DBB today. If anyone has some tips about the DBB > or > > > > things > > > > > to look for it would be greatly appreciated. This is > > definately > > > a > > > > > huge adjustment from the freedom she had in the casts!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 Welcome Sydney! s. New member Hi, I just found out about this site from Kori on the nosurgery4clubfoot site. My son Jasper is 16 weeks old and in DBB. We would like to join this list. Tamsin Sydney Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2005 Report Share Posted April 14, 2005 Ditto Come on Mom get that colonoscopy. The prep's a literal pain in the rear but the procedure itself really is no big deal. We hope to hear back that she not only had the test but got the ALL CLEAN from the doc. Narice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2005 Report Share Posted April 14, 2005 Ditto Come on Mom get that colonoscopy. The prep's a literal pain in the rear but the procedure itself really is no big deal. We hope to hear back that she not only had the test but got the ALL CLEAN from the doc. Narice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2005 Report Share Posted April 14, 2005 Really the prep is the worst part of the test they knock you out and you never knew you went through any procedure. Same with an EGD where they put a tube down your throat to look at your stomach. Nonnie Re: new member Ditto Come on Mom get that colonoscopy. The prep's a literal pain in the rear but the procedure itself really is no big deal. We hope to hear back that she not only had the test but got the ALL CLEAN from the doc. Narice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2005 Report Share Posted April 14, 2005 Really the prep is the worst part of the test they knock you out and you never knew you went through any procedure. Same with an EGD where they put a tube down your throat to look at your stomach. Nonnie Re: new member Ditto Come on Mom get that colonoscopy. The prep's a literal pain in the rear but the procedure itself really is no big deal. We hope to hear back that she not only had the test but got the ALL CLEAN from the doc. Narice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2005 Report Share Posted May 29, 2005 Hello to all, I have been reading this site for about 4 weeks now. I too got upset over Karmia's daughters, so deceided to join. I had rectal cancer, took chemo and xray for a month, had it taken out in Feb. Got along really good, they found cells in 4 of the 9 nodes, so once again taking chemo. i refused the xray this time, figured was enough burned up. ha ha. I have had 4of the 12 sessions, have 8 more to go. I have really gotten along good, so far. had a colostmy? will take down about oct. I am looking forward to that. So Karmia, look forward to it, not dread it. The stoma needs cleaned out, that is what they are talking about, like having a enama before surgury to clean out the bowels. won't be so bad. I figure I had 3 kids, and 10 grandchildren, so have had plenty of dirty diapers. ha ha, so can stand this. so plenty to live for,my hubby has been my biggest surporter also. My one daughter lives in Seattle , Wash, I live in Ohio, she left her hubby and 5 kids for 4 weeks to come take care of me. I love that girl. Hang in there, It will be over with before you know it. I need you to tell me how it goes. haha, so i will be ready for mine. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 Dear Pam, That's sad that our group member is raising up. PSC Starts with no symptoms usually first by elevated liver enzymes then other ones such as Itching, Fatigue, Jaundice and pain. It's different as the cases are, in some patients it progresses fast and in some other ones ,slow. What I suggest you as a PSC Patient is just knowing all about it by searching and avoiding harmful things and staying hopeful about its curing. Here in this group every member finds him/her self responsible to be supportive to other patients. so they will tell you more gradually. We are sorry to see you are suffering PSC too. Wish you the best grace, Health Melvyn ( 20 yrs, Tehran, PSC) (Whipple and Cholecyctectomy operations) > > Hello all!! I am Pam a newly diagnosed soul with PSC(2 > weeks) I am asymptomatic at this point besides > elevated liver enzymes and like CJ new to urso > 3/6.Just curious to know if someone has been on it for > a while.If so has their PSC slowed down,or not > advanced ??Thx Pam > > > _____________________________________________________________________ _______________ > Be a better friend, newshound, and > know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 My pharmacist printed out some studies about URSO for me that where helpful, Most of them talk about the use of URSO and the disease PBC, but I still found the info useful. PSC 5/07 Listed > > Hello all!! I am Pam a newly diagnosed soul with PSC(2 > weeks) I am asymptomatic at this point besides > elevated liver enzymes and like CJ new to urso > 3/6.Just curious to know if someone has been on it for > a while.If so has their PSC slowed down,or not > advanced ??Thx Pam > > > ________________________________________________________________________ ____________ > Be a better friend, newshound, and > know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 Everyone in this group are willing to share their experiences. I have also found if you go to messages, you can do a search of all the pervious post from the past years and get lots of info quickly. PSC 5/07 Listed > > Hello all!! I am Pam a newly diagnosed soul with PSC(2 > weeks) I am asymptomatic at this point besides > elevated liver enzymes and like CJ new to urso > 3/6.Just curious to know if someone has been on it for > a while.If so has their PSC slowed down,or not > advanced ??Thx Pam > > > ________________________________________________________________________ ____________ > Be a better friend, newshound, and > know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > Quote Link to comment Share on other sites More sharing options...
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