Guest guest Posted August 29, 2003 Report Share Posted August 29, 2003 Shari and Holly, I was just asking if did this!! Rose is almost 6 months old and during her hour that the dbb is off, she will twist that foot and poke her big toe in the air. the next minute she straightens it out and bounces on it. She wears her dbb 23/7 but I do give her the full hour every day without it. Sometimes she just lays on the floor and kicks. I have been making a point to stand her on her feet when the dbb is off. She stands up really well and bounces with the shoes on and is a little more tentative when she is barefoot. Any stories about your own children would be appreciated. Robin & Rose 3/12/03 Holly wrote: Shari, I could have typed your post. Wait, I actually did the other day when the boards were somewhat on the fritz..LOL Anyway, I completely understand what you are saying when you say that on will sometimes hold his foot in such a way that makes it appear as though it could possibly be relapsing. Just ask my dh, the other day we were going for a walk and I said " see, look how he's holding his foot, do you think I should call Dr. Ponseti? " ...only to have him completely turn it outward a second later. I was looking at my friend's baby's feet and noticed that she turns her toes/feet in quite often too. I think this may be a typical baby " stance " ...although it does cause some worry on our part doesn't it? I'll be curious to read other responses, but want you to know that once we went down to 14 hrs/day in the DBB per Dr. Ponseti's recommendation, the paranoia set in!!! Just know you're not alone! Holly Zachary 7/27/02 Unilateral Right Clubfoot Treated by Dr. Ponseti 14 hrs/day DBB > Hi everyone! Sorry for not posting in a while, but I haven't had any > questions until now. > In case some of you don't know us, our son on has a right > clubfoot and was treated by Dr. Ponseti when he was 4 months old. He > is now 8 months old. > on's time in the DBB has been reduced to 16 hours for a couple > of weeks now. We are really worried about relapse, so I emailed Dr. > Ponseti and asked him what to look for and he said his foot is > unlikely to relapse if on is wearing the DBB the time that he > should. I'm sending pictures to Dr. Ponseti tomorrow just to make > sure his foot is still doing okay. Anyhow, were any of you a little > paranoid about relapse? I look at on's foot and if he is > holding it a certain way, I think it looks like it's possibly > relapsing, but then he'll flip it way out other way and it looks > just fine. I just can't seem to stop worrying about it. My husband > and I are diligent about using the DBB, so I know the risk is low, > but there is always a risk. Has anyone had a relapse happen to them, > and if so, how did you know? Any input would help allay my fears. > Thanks, > > Shari Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2003 Report Share Posted August 29, 2003 Holly and Robin, Thanks for the posts. Holly I really had to laugh when I read your post! Also, how old was Zachary when you went down to 14 hours a day in the DBB? Thanks for making me feel like I'm not the only one who worries so much about relapse. Shari > > Hi everyone! Sorry for not posting in a while, but I haven't had > any > > questions until now. > > In case some of you don't know us, our son on has a right > > clubfoot and was treated by Dr. Ponseti when he was 4 months old. > He > > is now 8 months old. > > on's time in the DBB has been reduced to 16 hours for a > couple > > of weeks now. We are really worried about relapse, so I emailed Dr. > > Ponseti and asked him what to look for and he said his foot is > > unlikely to relapse if on is wearing the DBB the time that he > > should. I'm sending pictures to Dr. Ponseti tomorrow just to make > > sure his foot is still doing okay. Anyhow, were any of you a little > > paranoid about relapse? I look at on's foot and if he is > > holding it a certain way, I think it looks like it's possibly > > relapsing, but then he'll flip it way out other way and it looks > > just fine. I just can't seem to stop worrying about it. My husband > > and I are diligent about using the DBB, so I know the risk is low, > > but there is always a risk. Has anyone had a relapse happen to > them, > > and if so, how did you know? Any input would help allay my fears. > > Thanks, > > > > Shari > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2003 Report Share Posted August 29, 2003 I worry all the time. Especially since my son was not treated by a Ponsetti doctor. My husband and I decided to take pictures of his " corrected feet " and post them here and also send them to Dr. Ponsetti. After hearing Kai's story I am really worried that maybe my doctor just thinks his feet are corrected, and we aren't going to keep on just believing everything is okay if it isn't. His feet look good to me, but I am not a trained doctor. I hadn't done this before because I didn't think could afford to go anywhere else, but I have read differently from this group. Sorry for all of this I know you just asking a simple question but I just had to let it all out. > >Reply-To: nosurgery4clubfoot >To: nosurgery4clubfoot >Subject: relapse >Date: Thu, 28 Aug 2003 20:07:07 -0000 > >Hi everyone! Sorry for not posting in a while, but I haven't had any >questions until now. >In case some of you don't know us, our son on has a right >clubfoot and was treated by Dr. Ponseti when he was 4 months old. He >is now 8 months old. >on's time in the DBB has been reduced to 16 hours for a couple >of weeks now. We are really worried about relapse, so I emailed Dr. >Ponseti and asked him what to look for and he said his foot is >unlikely to relapse if on is wearing the DBB the time that he >should. I'm sending pictures to Dr. Ponseti tomorrow just to make >sure his foot is still doing okay. Anyhow, were any of you a little >paranoid about relapse? I look at on's foot and if he is >holding it a certain way, I think it looks like it's possibly >relapsing, but then he'll flip it way out other way and it looks >just fine. I just can't seem to stop worrying about it. My husband >and I are diligent about using the DBB, so I know the risk is low, >but there is always a risk. Has anyone had a relapse happen to them, >and if so, how did you know? Any input would help allay my fears. >Thanks, > >Shari > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2003 Report Share Posted August 29, 2003 Shari, I feel like I am always paranoid about a relapse. Becky is now 21 months old and is running and climbing like a champ. She was seen by Dr. Ponseti at 1 month old and did great. So then we decided to follow up with a Dr. on the qualified list once we got home, due to the cost of traveling to Iowa. When she was about 10 months old the Dr. here said that she was beginning to relapse, and that she HAD to wear the reverse last shoes(I didn't even notice that they were relapsing until I was shown what was going on). And I know from what I have read about the Ponseti method I knew that wasn't what she needed. So I emailed pictures to Dr. P and he called and wrote me back saying that she would need 2-3 additional casts and then back in the brace. So we went back and had that done. Now she is doing great. We have been seeing Dr. Early here at Children's Hospital LA and I really like seeing him and feel like he is really following " the method " . I am constantly checking her feet and she even wears the DBB a couple of extra hours a day. We go back for another checkup in a couple of weeks. I always seem to worry less about her feet after we have seen the doctor and he says that she is doing fine. I would feel TONS better if we were seeing Dr. P every couple of months but that is NOT an option. I wish that I could tell you not to worry , but as my husband says I am the queen of paranoia! But I am sure if you sent pictures to Dr. P he would be able to let you know how on's feet are looking, and if anyone could see a relapse it would be him! and Becky 11/12/01 Bilateral Clubfoot > Hi everyone! Sorry for not posting in a while, but I haven't had any > questions until now. > In case some of you don't know us, our son on has a right > clubfoot and was treated by Dr. Ponseti when he was 4 months old. He > is now 8 months old. > on's time in the DBB has been reduced to 16 hours for a couple > of weeks now. We are really worried about relapse, so I emailed Dr. > Ponseti and asked him what to look for and he said his foot is > unlikely to relapse if on is wearing the DBB the time that he > should. I'm sending pictures to Dr. Ponseti tomorrow just to make > sure his foot is still doing okay. Anyhow, were any of you a little > paranoid about relapse? I look at on's foot and if he is > holding it a certain way, I think it looks like it's possibly > relapsing, but then he'll flip it way out other way and it looks > just fine. I just can't seem to stop worrying about it. My husband > and I are diligent about using the DBB, so I know the risk is low, > but there is always a risk. Has anyone had a relapse happen to them, > and if so, how did you know? Any input would help allay my fears. > Thanks, > > Shari Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 Hey everyone. I started SCD 4 months ago and it was amazing after just the first day, felt like a normal person which i havent felt for years. about a month ago my UC symtoms started to return so i started the intro diet. my symptoms then slightly improved then as i reintroduced the next stage over food the symptoms returned within a day. I went back on the intro diet again and have been on it ever since (around 4 weeks now. I assumed that the diet was just not working for me which was discouraging after such a positive change but after reading about everyone else's relapses it seems this is fairly normal. My question is then, how long do the relapses normally last? Should i stop being on the intro diet (5 weeks seems way to long to be on it to me)? If i do start reintroducing foods how do i know if they are harming me if i already have symptoms? admittedly my current symptoms are not as bad as my old true flare ups there is far less blood and it is mostly watery D. Any help would be appreciated. Luke Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 What I suspect you're hitting is something called " the three month flare. " As you're aware, the objective of SCD is to starve out the bad bacteria. Well, it has been observed that right around three months on the diet, you've done such a good job of starving them that their numbers are dropping rapidly. You've gotten rid of most of the weak sisters amongst the bad bacteria and the remaining ones are the stronger ones. So in effect, right now, you're saying, " Away with you! " and they're saying " H-ll no, we won't go! " and creating havoc for you. So it is absolutely critical that you hold fast at this point and not eat any illegals, because if you feed the bacteria right now, you'll let those stronger ones multiple, and then they'll be that much harder to starve out. The " three month flare " can occur anywhere from 9 weeks to 16 weeks. It can also occur again at 6-7 months, and 10-12 months. Those bacteria are stubborn. But YOU are more stubborn. My suggestion would be to drop back to easier-to-digest foods for a couple of days, which you say you've already done. Rest as much as possible, and don't push. Then gradually (probably not quite so gradually as the first time) reintroduce your regular foods. — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 What I suspect you're hitting is something called " the three month flare. " As you're aware, the objective of SCD is to starve out the bad bacteria. Well, it has been observed that right around three months on the diet, you've done such a good job of starving them that their numbers are dropping rapidly. You've gotten rid of most of the weak sisters amongst the bad bacteria and the remaining ones are the stronger ones. So in effect, right now, you're saying, " Away with you! " and they're saying " H-ll no, we won't go! " and creating havoc for you. So it is absolutely critical that you hold fast at this point and not eat any illegals, because if you feed the bacteria right now, you'll let those stronger ones multiple, and then they'll be that much harder to starve out. The " three month flare " can occur anywhere from 9 weeks to 16 weeks. It can also occur again at 6-7 months, and 10-12 months. Those bacteria are stubborn. But YOU are more stubborn. My suggestion would be to drop back to easier-to-digest foods for a couple of days, which you say you've already done. Rest as much as possible, and don't push. Then gradually (probably not quite so gradually as the first time) reintroduce your regular foods. — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 > > What I suspect you're hitting is something called " the three month > flare. " As you're aware, the objective of SCD is to starve out the > bad bacteria. Well, it has been observed that right around three > months on the diet, you've done such a good job of starving them > that their numbers are dropping rapidly. You've gotten rid of most > of the weak sisters amongst the bad bacteria and the remaining ones > are the stronger ones. > > So in effect, right now, you're saying, " Away with you! " and they're > saying " H-ll no, we won't go! " and creating havoc for you. So it is > absolutely critical that you hold fast at this point and not eat any > illegals, because if you feed the bacteria right now, you'll let > those stronger ones multiple, and then they'll be that much harder > to starve out. > > The " three month flare " can occur anywhere from 9 weeks to 16 weeks. > It can also occur again at 6-7 months, and 10-12 months. Those > bacteria are stubborn. But YOU are more stubborn. > > My suggestion would be to drop back to easier-to-digest foods for a > couple of days, which you say you've already done. Rest as much as > possible, and don't push. Then gradually (probably not quite so > gradually as the first time) reintroduce your regular foods. Unfortunately there is no average period for when the flare is over - it's different for everyone - it can be days or months or several months. Sometimes it can take a long time to work back to where you were before the flare hit - and some of the time the only way to do so is by tweaking what you were eating previously. Mara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 Thank you. Should i wait till my watery D is better before introducing foods or just start introducing them and hope it doesnt get worse? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2009 Report Share Posted March 11, 2009 Marilyn and Mara gave you good advice, imo....I'm wondering if adding in some yogurt now might help you get out of this flare? What do others think of this? I don't have personal experience w. a long flare like this, but, from much reading here over the years, it seems like some folks need something to jump-start them out of the flare, and the yogurt is often just the thing to do it. Good luck and hang in there. Ellen in Boston 11 y/o dd scd since 5/06 for Crohn's med-free for six months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2009 Report Share Posted March 11, 2009 Marilyn and Mara gave you good advice, imo....I'm wondering if adding in some yogurt now might help you get out of this flare? What do others think of this? I don't have personal experience w. a long flare like this, but, from much reading here over the years, it seems like some folks need something to jump-start them out of the flare, and the yogurt is often just the thing to do it. Good luck and hang in there. Ellen in Boston 11 y/o dd scd since 5/06 for Crohn's med-free for six months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2009 Report Share Posted March 11, 2009 Marilyn and Mara gave you good advice, imo....I'm wondering if adding in some yogurt now might help you get out of this flare? What do others think of this? I don't have personal experience w. a long flare like this, but, from much reading here over the years, it seems like some folks need something to jump-start them out of the flare, and the yogurt is often just the thing to do it. Good luck and hang in there. Ellen in Boston 11 y/o dd scd since 5/06 for Crohn's med-free for six months Quote Link to comment Share on other sites More sharing options...
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