Guest guest Posted February 23, 2002 Report Share Posted February 23, 2002 Jenn, After 's tenotomies she ended up with one foot that was great, flexed 20% upward and one foot that was'nt so great. Only flexed about 10% and it was questionable at that point if she may possibly need another tenotomy at a future date for the one foot. The day she got her brace Dr. Ponseti had both feet out at the same angle in the shoes but he had to readjust the one foot on the brace so that it did'nt flex upward as high as the " good " foot. (So as not to do any damage to it while wearing the brace.) As it turned out, wearing the brace did the trick and at our next appointment 3 months later, both feet flexed to 20%. He said many times that the brace often helps in that area and not to worry. These days when I check her feet to see how flexible they still are, the one foot does tend to be a little " tighter " than the other but it's still good. She's been in the brace now for about a year and a half and only wears it at night time. I don't know what to say about the possible furthur surgery that your doctor is talking about, but I definitely would give Dr. Ponseti a call and get an opinion from him. Kind of like a second opinion. Holly and Question >Olivia had her tenotomy done yesterday. Wow! I have seen pictures >of how far out the casts are turned, but I was still surprised when I >got a look at it!!! My question is about the up and down movement of >the foot. Is that called dorsiflexion? And should it be good after >the tenotomy? And if it's not, what does that mean? The doctor said >that he was able to get her foot to a neutral position, but not any >further. Her big toe is also shorter than the rest of her toes and >he says that's because her first metatarsal still points down and he >can't get it to come up any further. He mentioned that some kids >will get more movement after the bracing, but I thought the brace was >just to hold the correction? He also said that she may require >further surgery besides the tenotomy. > >I am planning on emailing Dr. Ponseti with some pictures of her foot >and the casts to get his opinion, but also wanted to know what you >all think. What is your experience with this?? > >Thanks for any input! > >Jen & Olivia 10-18-01 Left Clubfoot > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2002 Report Share Posted February 23, 2002 Jenn, After 's tenotomies she ended up with one foot that was great, flexed 20% upward and one foot that was'nt so great. Only flexed about 10% and it was questionable at that point if she may possibly need another tenotomy at a future date for the one foot. The day she got her brace Dr. Ponseti had both feet out at the same angle in the shoes but he had to readjust the one foot on the brace so that it did'nt flex upward as high as the " good " foot. (So as not to do any damage to it while wearing the brace.) As it turned out, wearing the brace did the trick and at our next appointment 3 months later, both feet flexed to 20%. He said many times that the brace often helps in that area and not to worry. These days when I check her feet to see how flexible they still are, the one foot does tend to be a little " tighter " than the other but it's still good. She's been in the brace now for about a year and a half and only wears it at night time. I don't know what to say about the possible furthur surgery that your doctor is talking about, but I definitely would give Dr. Ponseti a call and get an opinion from him. Kind of like a second opinion. Holly and Question >Olivia had her tenotomy done yesterday. Wow! I have seen pictures >of how far out the casts are turned, but I was still surprised when I >got a look at it!!! My question is about the up and down movement of >the foot. Is that called dorsiflexion? And should it be good after >the tenotomy? And if it's not, what does that mean? The doctor said >that he was able to get her foot to a neutral position, but not any >further. Her big toe is also shorter than the rest of her toes and >he says that's because her first metatarsal still points down and he >can't get it to come up any further. He mentioned that some kids >will get more movement after the bracing, but I thought the brace was >just to hold the correction? He also said that she may require >further surgery besides the tenotomy. > >I am planning on emailing Dr. Ponseti with some pictures of her foot >and the casts to get his opinion, but also wanted to know what you >all think. What is your experience with this?? > >Thanks for any input! > >Jen & Olivia 10-18-01 Left Clubfoot > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2002 Report Share Posted February 23, 2002 Thank you so much ! That certainly relieves some of my anxiety. I will be emailing Dr. Ponseti on Monday to see what he thinks! Jen & Olivia > Jen, > I know it is a shock to see how up and out the foot is! If you go to > the photos section and look in Calebs album you can see what his and > his friend Edens casts looked like the day of their Tenotomies were > done at the U of Iowa. It is picture #7. > > Also about the dorsoflexion, Calebs was not great at first and did > improve in the shoes. Now his is fine. > > And I am always for Dr. Ponseti's opinion!!!! Who would know more > than he would? > Best of luck, you are in our prayers > and Caleb 3-31-01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2002 Report Share Posted February 23, 2002 Thank you so much ! That certainly relieves some of my anxiety. I will be emailing Dr. Ponseti on Monday to see what he thinks! Jen & Olivia > Jen, > I know it is a shock to see how up and out the foot is! If you go to > the photos section and look in Calebs album you can see what his and > his friend Edens casts looked like the day of their Tenotomies were > done at the U of Iowa. It is picture #7. > > Also about the dorsoflexion, Calebs was not great at first and did > improve in the shoes. Now his is fine. > > And I am always for Dr. Ponseti's opinion!!!! Who would know more > than he would? > Best of luck, you are in our prayers > and Caleb 3-31-01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2002 Report Share Posted February 23, 2002 Thank you so much ! That certainly relieves some of my anxiety. I will be emailing Dr. Ponseti on Monday to see what he thinks! Jen & Olivia > Jen, > I know it is a shock to see how up and out the foot is! If you go to > the photos section and look in Calebs album you can see what his and > his friend Edens casts looked like the day of their Tenotomies were > done at the U of Iowa. It is picture #7. > > Also about the dorsoflexion, Calebs was not great at first and did > improve in the shoes. Now his is fine. > > And I am always for Dr. Ponseti's opinion!!!! Who would know more > than he would? > Best of luck, you are in our prayers > and Caleb 3-31-01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2002 Report Share Posted February 23, 2002 Thank you Holly! I think that the surgery that the doctor was talking about was a tendon transfer. He said that since Olivia's clubfoot is so severe and nonflexible that she is at a really high risk of a relapse. He also said that it's very important to use the brace diligently, but that some kids just don't " take to it " and end up needing the tendon transfer. I guess the point he was trying to make is that we must make her wear the brace no matter what since her foot is so severe. She really has no dorsoflexion right now. He was able to move her foot into the neutral position, but not any further. I know he had hoped for more than that. He also told us that the brace can be helpful in that area and to just wait and see. I'm still going to be emailing Dr. Ponseti for his opinion, but thanks again for your input!! Jen & Olivia > Jenn, > After 's tenotomies she ended up with one foot that was great, flexed > 20% upward and one foot that was'nt so great. Only flexed about 10% and it > was questionable at that point if she may possibly need another tenotomy at > a future date for the one foot. The day she got her brace Dr. Ponseti had > both feet out at the same angle in the shoes but he had to readjust the one > foot on the brace so that it did'nt flex upward as high as the " good " foot. > (So as not to do any damage to it while wearing the brace.) As it turned > out, wearing the brace did the trick and at our next appointment 3 months > later, both feet flexed to 20%. He said many times that the brace often > helps in that area and not to worry. > These days when I check her feet to see how flexible they still are, the one > foot does tend to be a little " tighter " than the other but it's still good. > She's been in the brace now for about a year and a half and only wears it at > night time. > I don't know what to say about the possible furthur surgery that your doctor > is talking about, but I definitely would give Dr. Ponseti a call and get an > opinion from him. Kind of like a second opinion. > Holly and > Question > > > >Olivia had her tenotomy done yesterday. Wow! I have seen pictures > >of how far out the casts are turned, but I was still surprised when I > >got a look at it!!! My question is about the up and down movement of > >the foot. Is that called dorsiflexion? And should it be good after > >the tenotomy? And if it's not, what does that mean? The doctor said > >that he was able to get her foot to a neutral position, but not any > >further. Her big toe is also shorter than the rest of her toes and > >he says that's because her first metatarsal still points down and he > >can't get it to come up any further. He mentioned that some kids > >will get more movement after the bracing, but I thought the brace was > >just to hold the correction? He also said that she may require > >further surgery besides the tenotomy. > > > >I am planning on emailing Dr. Ponseti with some pictures of her foot > >and the casts to get his opinion, but also wanted to know what you > >all think. What is your experience with this?? > > > >Thanks for any input! > > > >Jen & Olivia 10-18-01 Left Clubfoot > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2002 Report Share Posted February 23, 2002 Thank you Holly! I think that the surgery that the doctor was talking about was a tendon transfer. He said that since Olivia's clubfoot is so severe and nonflexible that she is at a really high risk of a relapse. He also said that it's very important to use the brace diligently, but that some kids just don't " take to it " and end up needing the tendon transfer. I guess the point he was trying to make is that we must make her wear the brace no matter what since her foot is so severe. She really has no dorsoflexion right now. He was able to move her foot into the neutral position, but not any further. I know he had hoped for more than that. He also told us that the brace can be helpful in that area and to just wait and see. I'm still going to be emailing Dr. Ponseti for his opinion, but thanks again for your input!! Jen & Olivia > Jenn, > After 's tenotomies she ended up with one foot that was great, flexed > 20% upward and one foot that was'nt so great. Only flexed about 10% and it > was questionable at that point if she may possibly need another tenotomy at > a future date for the one foot. The day she got her brace Dr. Ponseti had > both feet out at the same angle in the shoes but he had to readjust the one > foot on the brace so that it did'nt flex upward as high as the " good " foot. > (So as not to do any damage to it while wearing the brace.) As it turned > out, wearing the brace did the trick and at our next appointment 3 months > later, both feet flexed to 20%. He said many times that the brace often > helps in that area and not to worry. > These days when I check her feet to see how flexible they still are, the one > foot does tend to be a little " tighter " than the other but it's still good. > She's been in the brace now for about a year and a half and only wears it at > night time. > I don't know what to say about the possible furthur surgery that your doctor > is talking about, but I definitely would give Dr. Ponseti a call and get an > opinion from him. Kind of like a second opinion. > Holly and > Question > > > >Olivia had her tenotomy done yesterday. Wow! I have seen pictures > >of how far out the casts are turned, but I was still surprised when I > >got a look at it!!! My question is about the up and down movement of > >the foot. Is that called dorsiflexion? And should it be good after > >the tenotomy? And if it's not, what does that mean? The doctor said > >that he was able to get her foot to a neutral position, but not any > >further. Her big toe is also shorter than the rest of her toes and > >he says that's because her first metatarsal still points down and he > >can't get it to come up any further. He mentioned that some kids > >will get more movement after the bracing, but I thought the brace was > >just to hold the correction? He also said that she may require > >further surgery besides the tenotomy. > > > >I am planning on emailing Dr. Ponseti with some pictures of her foot > >and the casts to get his opinion, but also wanted to know what you > >all think. What is your experience with this?? > > > >Thanks for any input! > > > >Jen & Olivia 10-18-01 Left Clubfoot > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2002 Report Share Posted February 23, 2002 Hi Jen, When Eden had her casts removed after her tenotomy, Dr. Ponseti said that her dorsiflexion was not as good as he would have liked it to be. At that point, she could only flex her feet upwards to 15%. He gave us stretching exercises to perform on her feet for five minutes every day, but warned us that if her dorsiflexion did not improve after wearing the FAB full-time for three months, she might have to have a second tenotomy performed. We were very diligent with the exercises and FAB wear, and were relieved to find out that after the three months were over, her feet were able to flex upwards to 30% (I believe Dr. P said that 25% is considered " normal " ). I would contact Dr. Ponseti, but please try not to worry too much. If it is just a matter of limited dorsiflexion, Dr. P said that the WORST CASE scenario would be another tenotomy. & Eden 7/20/01 severe bilateral CF > Olivia had her tenotomy done yesterday. Wow! I have seen pictures > of how far out the casts are turned, but I was still surprised when I > got a look at it!!! My question is about the up and down movement of > the foot. Is that called dorsiflexion? And should it be good after > the tenotomy? And if it's not, what does that mean? The doctor said > that he was able to get her foot to a neutral position, but not any > further. Her big toe is also shorter than the rest of her toes and > he says that's because her first metatarsal still points down and he > can't get it to come up any further. He mentioned that some kids > will get more movement after the bracing, but I thought the brace was > just to hold the correction? He also said that she may require > further surgery besides the tenotomy. > > I am planning on emailing Dr. Ponseti with some pictures of her foot > and the casts to get his opinion, but also wanted to know what you > all think. What is your experience with this?? > > Thanks for any input! > > Jen & Olivia 10-18-01 Left Clubfoot Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2002 Report Share Posted February 23, 2002 Hi Jen, My daughter had a unilateral clubfoot. Her tenotomy was done by an non Ponseti practicing doctor. It is my understanding that there will always be a slight difference in dorsiflexion between the clubfoot side and the non clubfoot side. My daughter is 2y.o. we can tell a difference in the range of dorsiflexion. However Ivy's funcion is good. She can rise up on her tippy toes. I know that when we switched to Dr .Ponseti that he was concidering doing a second tenotomy. I don't know if that is an option, or if that would help Olivia. It is my understanding that the FAB is to be worn after " correction " is achieved. However the bend in the bar is to aide in keeping the heal down. I can see how the FAB might help improve dorsiflexion. I would inncorage you to go ahead with your plans to talk with Dr Ponseti. Sara and Ivy 8/17/99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2002 Report Share Posted February 24, 2002 I think the reason the brace helps with the dorsiflexion is that it is very heavy and can make the ligaments more flexible because of the weight pulling on them. Joanne > >Reply-To: nosurgery4clubfoot >To: nosurgery4clubfoot >Subject: Re: Question >Date: Sun, 24 Feb 2002 03:48:42 -0000 > >Thank you Holly! I think that the surgery that the doctor was >talking about was a tendon transfer. He said that since Olivia's >clubfoot is so severe and nonflexible that she is at a really high >risk of a relapse. He also said that it's very important to use the >brace diligently, but that some kids just don't " take to it " and end >up needing the tendon transfer. I guess the point he was trying to >make is that we must make her wear the brace no matter what since her >foot is so severe. She really has no dorsoflexion right now. He was >able to move her foot into the neutral position, but not any >further. I know he had hoped for more than that. He also told us >that the brace can be helpful in that area and to just wait and see. > >I'm still going to be emailing Dr. Ponseti for his opinion, but >thanks again for your input!! > >Jen & Olivia > > > > Jenn, > > After 's tenotomies she ended up with one foot that was great, >flexed > > 20% upward and one foot that was'nt so great. Only flexed about 10% >and it > > was questionable at that point if she may possibly need another >tenotomy at > > a future date for the one foot. The day she got her brace Dr. >Ponseti had > > both feet out at the same angle in the shoes but he had to readjust >the one > > foot on the brace so that it did'nt flex upward as high as >the " good " foot. > > (So as not to do any damage to it while wearing the brace.) As it >turned > > out, wearing the brace did the trick and at our next appointment 3 >months > > later, both feet flexed to 20%. He said many times that the brace >often > > helps in that area and not to worry. > > These days when I check her feet to see how flexible they still >are, the one > > foot does tend to be a little " tighter " than the other but it's >still good. > > She's been in the brace now for about a year and a half and only >wears it at > > night time. > > I don't know what to say about the possible furthur surgery that >your doctor > > is talking about, but I definitely would give Dr. Ponseti a call >and get an > > opinion from him. Kind of like a second opinion. > > Holly and > > Question > > > > > > >Olivia had her tenotomy done yesterday. Wow! I have seen pictures > > >of how far out the casts are turned, but I was still surprised >when I > > >got a look at it!!! My question is about the up and down movement >of > > >the foot. Is that called dorsiflexion? And should it be good >after > > >the tenotomy? And if it's not, what does that mean? The doctor >said > > >that he was able to get her foot to a neutral position, but not any > > >further. Her big toe is also shorter than the rest of her toes and > > >he says that's because her first metatarsal still points down and >he > > >can't get it to come up any further. He mentioned that some kids > > >will get more movement after the bracing, but I thought the brace >was > > >just to hold the correction? He also said that she may require > > >further surgery besides the tenotomy. > > > > > >I am planning on emailing Dr. Ponseti with some pictures of her >foot > > >and the casts to get his opinion, but also wanted to know what you > > >all think. What is your experience with this?? > > > > > >Thanks for any input! > > > > > >Jen & Olivia 10-18-01 Left Clubfoot > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2002 Report Share Posted February 24, 2002 Jenn, I completely agree about using the brace diligently. After going through one unsuccessful treatment we had our minds set that if this Ponseti method worked we would do every thing that the doctor told us for as long as he told us to ensure the best possible outcome. Although sometimes there is always the case that even though you have done everything right and not strayed from your regiment that problems can arise anyway, at least we thought that we could say we did everything in our power to avoid it. The BEST piece of advice Dr. Ponseti ever gave us was to treat the brace as though it was a cast and unremovable for the first couple of nights so that could adjust to it and learn to live with it right from the start. Since then she has never had a single night that she has been out of the brace, even the times that she was ill. She has always slept better with it on anyways because she is so used to it. Up until a few nights ago................I took the brace off at 3:00am because she has been so sick the past week. She has the flu and a double ear infection and her temp was at 104 that night. Boy, I have to tell you, on one hand I did'nt hesitate to give her a little comfort by taking the brace off and putting her in bed with me for the rest of the night, but on the other hand I felt guilty about loosing those few hours out of the brace. Anyway, Dr. Ponseti could'nt stress enough the importance of the brace being used exactly as prescribed, like your doctor has also warned you of. I think initially it was the one part of the treatment that my husband and I dreaded the most. I think mostly because of the amount of time (in years) that it has to usually be worn. Now I can honestly say, it's just part of 's jammies! We don't even notice it anymore and she could care less that we put it on every night. She does however give us her opinion in the morning when she has to wait a half hour after getting up for me to take them off. Best of luck, Holly and Question >> >> >> >Olivia had her tenotomy done yesterday. Wow! I have seen pictures >> >of how far out the casts are turned, but I was still surprised >when I >> >got a look at it!!! My question is about the up and down movement >of >> >the foot. Is that called dorsiflexion? And should it be good >after >> >the tenotomy? And if it's not, what does that mean? The doctor >said >> >that he was able to get her foot to a neutral position, but not any >> >further. Her big toe is also shorter than the rest of her toes and >> >he says that's because her first metatarsal still points down and >he >> >can't get it to come up any further. He mentioned that some kids >> >will get more movement after the bracing, but I thought the brace >was >> >just to hold the correction? He also said that she may require >> >further surgery besides the tenotomy. >> > >> >I am planning on emailing Dr. Ponseti with some pictures of her >foot >> >and the casts to get his opinion, but also wanted to know what you >> >all think. What is your experience with this?? >> > >> >Thanks for any input! >> > >> >Jen & Olivia 10-18-01 Left Clubfoot >> > >> > >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 Hi Kristi, While some people do achieve spontaneous remission within a few months, the average person takes 6 months to 1 year and many people remain on the drugs for several years. Everyone eventually goes into spontaneous remission and the idea is to use the drugs until this happens. Anti-thyroid drugs both help lower your thyroid hormone levels and help you achieve remission because of their mild immunosuppressant effect. The idea isn't to take you off the drugs to see if you've achieved remission because that's just guessing. Ideally, you would have a test for TSI, the antibodies that cause hyperthyroidism in GD early on. When your doctor suspects that you might be approaching remission, you'd have another TSI level. When it approaches the low end of the normal range, you've achieved remission. There are other tests to help determine if you're in remission. Some docs use ultrasound with doppler imaging to see if you've had a reduction in thyroid volume. But there has to be guidelines like this. Your thyroid hormone levels decline from the drugs so you can't look at these levels as a way of predicting remission. Also, ATDs should never be withdrawn abruptly. The idea is to reduce them slowly so your immune system gets used to the change. Your idea to combine diet and supplements as part of your healing protocol is a good one. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 Hi Kristi, While some people do achieve spontaneous remission within a few months, the average person takes 6 months to 1 year and many people remain on the drugs for several years. Everyone eventually goes into spontaneous remission and the idea is to use the drugs until this happens. Anti-thyroid drugs both help lower your thyroid hormone levels and help you achieve remission because of their mild immunosuppressant effect. The idea isn't to take you off the drugs to see if you've achieved remission because that's just guessing. Ideally, you would have a test for TSI, the antibodies that cause hyperthyroidism in GD early on. When your doctor suspects that you might be approaching remission, you'd have another TSI level. When it approaches the low end of the normal range, you've achieved remission. There are other tests to help determine if you're in remission. Some docs use ultrasound with doppler imaging to see if you've had a reduction in thyroid volume. But there has to be guidelines like this. Your thyroid hormone levels decline from the drugs so you can't look at these levels as a way of predicting remission. Also, ATDs should never be withdrawn abruptly. The idea is to reduce them slowly so your immune system gets used to the change. Your idea to combine diet and supplements as part of your healing protocol is a good one. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 Hi Kristi, While some people do achieve spontaneous remission within a few months, the average person takes 6 months to 1 year and many people remain on the drugs for several years. Everyone eventually goes into spontaneous remission and the idea is to use the drugs until this happens. Anti-thyroid drugs both help lower your thyroid hormone levels and help you achieve remission because of their mild immunosuppressant effect. The idea isn't to take you off the drugs to see if you've achieved remission because that's just guessing. Ideally, you would have a test for TSI, the antibodies that cause hyperthyroidism in GD early on. When your doctor suspects that you might be approaching remission, you'd have another TSI level. When it approaches the low end of the normal range, you've achieved remission. There are other tests to help determine if you're in remission. Some docs use ultrasound with doppler imaging to see if you've had a reduction in thyroid volume. But there has to be guidelines like this. Your thyroid hormone levels decline from the drugs so you can't look at these levels as a way of predicting remission. Also, ATDs should never be withdrawn abruptly. The idea is to reduce them slowly so your immune system gets used to the change. Your idea to combine diet and supplements as part of your healing protocol is a good one. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 In a message dated 4/23/2002 10:18:45 AM Central Daylight Time, kristi@... writes: > Hi Everyone, > I have a question I thought I'd just throw out here. I had my doc > appointment yesterday. I was diagnosed with Graves in December, > started tapazole in January, went way into hypoland and was dropped > from 40 mg to 10 mg about five weeks ago. Anyway, the doc asked me > how I felt and I told her I was feeling fine actually. She said my > thryoid was still a little enlarged and she didn't think I was in > remission. She said that we'd wait for the labs to get back and if > everything was good we'd stay on this dose for 2 or 3 months and then > see about stopping them to see if I go into remission. ANYWAY, my > question is....doesn't it take longer than a few months to achieve > remission? From everything I've read, you need to be on at least a > small dose of meds for 12-18 months before having a chance at > remission. This doctor has been OK, but she does mention RAI > everytime I see her. Am I wrong or is this a little rushed? I don't > feel anywhere near ready to stop the medication in 2 months. I'm > still working on dietary and lifestyle changes and to achieve some > kind of feeling of balance. Does that make sense? > Thanks for any thoughts you might have on this. > Kristi > Kristi, My daughter Amy just had another endo visit yesterday and the doctor thinks she's going toward hypo after 8 weeks of Tapazole, 10 mg. twice a day. Not only has he not even mentioned RAI as a possibility, but his opinion was that if she could go that quickly from hyper to hypo, he believes she will NEVER need think of surgery or RAI, that she can be successfully treated with ATDs. We're waiting for the blood tests to come back but he's looking at lowering her dose to get her levels right on target. So, yes, I believe your doctor is out of line. Stay strong in what you believe you need. It sounds as if your numbers changed as rapidly as Amy's did, albeit on a higher dose of ATD. Amy's Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 In a message dated 4/23/2002 10:18:45 AM Central Daylight Time, kristi@... writes: > Hi Everyone, > I have a question I thought I'd just throw out here. I had my doc > appointment yesterday. I was diagnosed with Graves in December, > started tapazole in January, went way into hypoland and was dropped > from 40 mg to 10 mg about five weeks ago. Anyway, the doc asked me > how I felt and I told her I was feeling fine actually. She said my > thryoid was still a little enlarged and she didn't think I was in > remission. She said that we'd wait for the labs to get back and if > everything was good we'd stay on this dose for 2 or 3 months and then > see about stopping them to see if I go into remission. ANYWAY, my > question is....doesn't it take longer than a few months to achieve > remission? From everything I've read, you need to be on at least a > small dose of meds for 12-18 months before having a chance at > remission. This doctor has been OK, but she does mention RAI > everytime I see her. Am I wrong or is this a little rushed? I don't > feel anywhere near ready to stop the medication in 2 months. I'm > still working on dietary and lifestyle changes and to achieve some > kind of feeling of balance. Does that make sense? > Thanks for any thoughts you might have on this. > Kristi > Kristi, My daughter Amy just had another endo visit yesterday and the doctor thinks she's going toward hypo after 8 weeks of Tapazole, 10 mg. twice a day. Not only has he not even mentioned RAI as a possibility, but his opinion was that if she could go that quickly from hyper to hypo, he believes she will NEVER need think of surgery or RAI, that she can be successfully treated with ATDs. We're waiting for the blood tests to come back but he's looking at lowering her dose to get her levels right on target. So, yes, I believe your doctor is out of line. Stay strong in what you believe you need. It sounds as if your numbers changed as rapidly as Amy's did, albeit on a higher dose of ATD. Amy's Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 In a message dated 4/23/2002 10:18:45 AM Central Daylight Time, kristi@... writes: > Hi Everyone, > I have a question I thought I'd just throw out here. I had my doc > appointment yesterday. I was diagnosed with Graves in December, > started tapazole in January, went way into hypoland and was dropped > from 40 mg to 10 mg about five weeks ago. Anyway, the doc asked me > how I felt and I told her I was feeling fine actually. She said my > thryoid was still a little enlarged and she didn't think I was in > remission. She said that we'd wait for the labs to get back and if > everything was good we'd stay on this dose for 2 or 3 months and then > see about stopping them to see if I go into remission. ANYWAY, my > question is....doesn't it take longer than a few months to achieve > remission? From everything I've read, you need to be on at least a > small dose of meds for 12-18 months before having a chance at > remission. This doctor has been OK, but she does mention RAI > everytime I see her. Am I wrong or is this a little rushed? I don't > feel anywhere near ready to stop the medication in 2 months. I'm > still working on dietary and lifestyle changes and to achieve some > kind of feeling of balance. Does that make sense? > Thanks for any thoughts you might have on this. > Kristi > Kristi, My daughter Amy just had another endo visit yesterday and the doctor thinks she's going toward hypo after 8 weeks of Tapazole, 10 mg. twice a day. Not only has he not even mentioned RAI as a possibility, but his opinion was that if she could go that quickly from hyper to hypo, he believes she will NEVER need think of surgery or RAI, that she can be successfully treated with ATDs. We're waiting for the blood tests to come back but he's looking at lowering her dose to get her levels right on target. So, yes, I believe your doctor is out of line. Stay strong in what you believe you need. It sounds as if your numbers changed as rapidly as Amy's did, albeit on a higher dose of ATD. Amy's Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 > This doctor has been OK, but she does mention RAI > everytime I see her. Am I wrong or is this a little rushed? I don't > feel anywhere near ready to stop the medication in 2 months. I'm > still working on dietary and lifestyle changes and to achieve some > kind of feeling of balance. Does that make sense? > Thanks for any thoughts you might have on this. Kristi, I'd say you are being rushed! Your body and mind need time and your instincts know it. Follow those gut reactions, they can tell you alot. If your doc is not willing to give you the time you need to find balance, then maybe you should look for another. SOme people take ATD's for years and years. You get as long as you want! Val Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 > This doctor has been OK, but she does mention RAI > everytime I see her. Am I wrong or is this a little rushed? I don't > feel anywhere near ready to stop the medication in 2 months. I'm > still working on dietary and lifestyle changes and to achieve some > kind of feeling of balance. Does that make sense? > Thanks for any thoughts you might have on this. Kristi, I'd say you are being rushed! Your body and mind need time and your instincts know it. Follow those gut reactions, they can tell you alot. If your doc is not willing to give you the time you need to find balance, then maybe you should look for another. SOme people take ATD's for years and years. You get as long as you want! Val Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 Absolutely it takes longer than that. My doc told me the same thing-try it for a few months and go off and see what happens. That's just asking for failure. Of course, he just wants me to have RAI and get it over with. From what I understand it does take 18 to 24 months, AND you should never stop them cold turkey. You need to wean off them so your system doesn't go into shock! If you're heading for remission, you'll have been lowering your dose gradually to keep from going hypo most likely anyway. In some cases, there's a spontaneous remission, but I think that's rare. Hang tough. As long as you're feeling good and doing OK on the ATDs there's no reason to rush it. Holly Question Hi Everyone, I have a question I thought I'd just throw out here. I had my doc appointment yesterday. I was diagnosed with Graves in December, started tapazole in January, went way into hypoland and was dropped from 40 mg to 10 mg about five weeks ago. Anyway, the doc asked me how I felt and I told her I was feeling fine actually. She said my thryoid was still a little enlarged and she didn't think I was in remission. She said that we'd wait for the labs to get back and if everything was good we'd stay on this dose for 2 or 3 months and then see about stopping them to see if I go into remission. ANYWAY, my question is....doesn't it take longer than a few months to achieve remission? From everything I've read, you need to be on at least a small dose of meds for 12-18 months before having a chance at remission. This doctor has been OK, but she does mention RAI everytime I see her. Am I wrong or is this a little rushed? I don't feel anywhere near ready to stop the medication in 2 months. I'm still working on dietary and lifestyle changes and to achieve some kind of feeling of balance. Does that make sense? Thanks for any thoughts you might have on this. Kristi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 Absolutely it takes longer than that. My doc told me the same thing-try it for a few months and go off and see what happens. That's just asking for failure. Of course, he just wants me to have RAI and get it over with. From what I understand it does take 18 to 24 months, AND you should never stop them cold turkey. You need to wean off them so your system doesn't go into shock! If you're heading for remission, you'll have been lowering your dose gradually to keep from going hypo most likely anyway. In some cases, there's a spontaneous remission, but I think that's rare. Hang tough. As long as you're feeling good and doing OK on the ATDs there's no reason to rush it. Holly Question Hi Everyone, I have a question I thought I'd just throw out here. I had my doc appointment yesterday. I was diagnosed with Graves in December, started tapazole in January, went way into hypoland and was dropped from 40 mg to 10 mg about five weeks ago. Anyway, the doc asked me how I felt and I told her I was feeling fine actually. She said my thryoid was still a little enlarged and she didn't think I was in remission. She said that we'd wait for the labs to get back and if everything was good we'd stay on this dose for 2 or 3 months and then see about stopping them to see if I go into remission. ANYWAY, my question is....doesn't it take longer than a few months to achieve remission? From everything I've read, you need to be on at least a small dose of meds for 12-18 months before having a chance at remission. This doctor has been OK, but she does mention RAI everytime I see her. Am I wrong or is this a little rushed? I don't feel anywhere near ready to stop the medication in 2 months. I'm still working on dietary and lifestyle changes and to achieve some kind of feeling of balance. Does that make sense? Thanks for any thoughts you might have on this. Kristi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 Absolutely it takes longer than that. My doc told me the same thing-try it for a few months and go off and see what happens. That's just asking for failure. Of course, he just wants me to have RAI and get it over with. From what I understand it does take 18 to 24 months, AND you should never stop them cold turkey. You need to wean off them so your system doesn't go into shock! If you're heading for remission, you'll have been lowering your dose gradually to keep from going hypo most likely anyway. In some cases, there's a spontaneous remission, but I think that's rare. Hang tough. As long as you're feeling good and doing OK on the ATDs there's no reason to rush it. Holly Question Hi Everyone, I have a question I thought I'd just throw out here. I had my doc appointment yesterday. I was diagnosed with Graves in December, started tapazole in January, went way into hypoland and was dropped from 40 mg to 10 mg about five weeks ago. Anyway, the doc asked me how I felt and I told her I was feeling fine actually. She said my thryoid was still a little enlarged and she didn't think I was in remission. She said that we'd wait for the labs to get back and if everything was good we'd stay on this dose for 2 or 3 months and then see about stopping them to see if I go into remission. ANYWAY, my question is....doesn't it take longer than a few months to achieve remission? From everything I've read, you need to be on at least a small dose of meds for 12-18 months before having a chance at remission. This doctor has been OK, but she does mention RAI everytime I see her. Am I wrong or is this a little rushed? I don't feel anywhere near ready to stop the medication in 2 months. I'm still working on dietary and lifestyle changes and to achieve some kind of feeling of balance. Does that make sense? Thanks for any thoughts you might have on this. Kristi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 That's interesting...I hadn't heard that. I was actually a little surprised by how well the drugs seemed to work. I'm glad to hear your daughter is doing well on them too! My heart goes out to her, being so young. She's lucky to have such a caring mother who is out there looking for information! My thoughts and prayers are with you, Kristi Re: Question In a message dated 4/23/2002 10:18:45 AM Central Daylight Time, kristi@... writes: > Hi Everyone, > I have a question I thought I'd just throw out here. I had my doc > appointment yesterday. I was diagnosed with Graves in December, > started tapazole in January, went way into hypoland and was dropped > from 40 mg to 10 mg about five weeks ago. Anyway, the doc asked me > how I felt and I told her I was feeling fine actually. She said my > thryoid was still a little enlarged and she didn't think I was in > remission. She said that we'd wait for the labs to get back and if > everything was good we'd stay on this dose for 2 or 3 months and then > see about stopping them to see if I go into remission. ANYWAY, my > question is....doesn't it take longer than a few months to achieve > remission? From everything I've read, you need to be on at least a > small dose of meds for 12-18 months before having a chance at > remission. This doctor has been OK, but she does mention RAI > everytime I see her. Am I wrong or is this a little rushed? I don't > feel anywhere near ready to stop the medication in 2 months. I'm > still working on dietary and lifestyle changes and to achieve some > kind of feeling of balance. Does that make sense? > Thanks for any thoughts you might have on this. > Kristi > Kristi, My daughter Amy just had another endo visit yesterday and the doctor thinks she's going toward hypo after 8 weeks of Tapazole, 10 mg. twice a day. Not only has he not even mentioned RAI as a possibility, but his opinion was that if she could go that quickly from hyper to hypo, he believes she will NEVER need think of surgery or RAI, that she can be successfully treated with ATDs. We're waiting for the blood tests to come back but he's looking at lowering her dose to get her levels right on target. So, yes, I believe your doctor is out of line. Stay strong in what you believe you need. It sounds as if your numbers changed as rapidly as Amy's did, albeit on a higher dose of ATD. Amy's Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 That's interesting...I hadn't heard that. I was actually a little surprised by how well the drugs seemed to work. I'm glad to hear your daughter is doing well on them too! My heart goes out to her, being so young. She's lucky to have such a caring mother who is out there looking for information! My thoughts and prayers are with you, Kristi Re: Question In a message dated 4/23/2002 10:18:45 AM Central Daylight Time, kristi@... writes: > Hi Everyone, > I have a question I thought I'd just throw out here. I had my doc > appointment yesterday. I was diagnosed with Graves in December, > started tapazole in January, went way into hypoland and was dropped > from 40 mg to 10 mg about five weeks ago. Anyway, the doc asked me > how I felt and I told her I was feeling fine actually. She said my > thryoid was still a little enlarged and she didn't think I was in > remission. She said that we'd wait for the labs to get back and if > everything was good we'd stay on this dose for 2 or 3 months and then > see about stopping them to see if I go into remission. ANYWAY, my > question is....doesn't it take longer than a few months to achieve > remission? From everything I've read, you need to be on at least a > small dose of meds for 12-18 months before having a chance at > remission. This doctor has been OK, but she does mention RAI > everytime I see her. Am I wrong or is this a little rushed? I don't > feel anywhere near ready to stop the medication in 2 months. I'm > still working on dietary and lifestyle changes and to achieve some > kind of feeling of balance. Does that make sense? > Thanks for any thoughts you might have on this. > Kristi > Kristi, My daughter Amy just had another endo visit yesterday and the doctor thinks she's going toward hypo after 8 weeks of Tapazole, 10 mg. twice a day. Not only has he not even mentioned RAI as a possibility, but his opinion was that if she could go that quickly from hyper to hypo, he believes she will NEVER need think of surgery or RAI, that she can be successfully treated with ATDs. We're waiting for the blood tests to come back but he's looking at lowering her dose to get her levels right on target. So, yes, I believe your doctor is out of line. Stay strong in what you believe you need. It sounds as if your numbers changed as rapidly as Amy's did, albeit on a higher dose of ATD. Amy's Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 That's interesting...I hadn't heard that. I was actually a little surprised by how well the drugs seemed to work. I'm glad to hear your daughter is doing well on them too! My heart goes out to her, being so young. She's lucky to have such a caring mother who is out there looking for information! My thoughts and prayers are with you, Kristi Re: Question In a message dated 4/23/2002 10:18:45 AM Central Daylight Time, kristi@... writes: > Hi Everyone, > I have a question I thought I'd just throw out here. I had my doc > appointment yesterday. I was diagnosed with Graves in December, > started tapazole in January, went way into hypoland and was dropped > from 40 mg to 10 mg about five weeks ago. Anyway, the doc asked me > how I felt and I told her I was feeling fine actually. She said my > thryoid was still a little enlarged and she didn't think I was in > remission. She said that we'd wait for the labs to get back and if > everything was good we'd stay on this dose for 2 or 3 months and then > see about stopping them to see if I go into remission. ANYWAY, my > question is....doesn't it take longer than a few months to achieve > remission? From everything I've read, you need to be on at least a > small dose of meds for 12-18 months before having a chance at > remission. This doctor has been OK, but she does mention RAI > everytime I see her. Am I wrong or is this a little rushed? I don't > feel anywhere near ready to stop the medication in 2 months. I'm > still working on dietary and lifestyle changes and to achieve some > kind of feeling of balance. Does that make sense? > Thanks for any thoughts you might have on this. > Kristi > Kristi, My daughter Amy just had another endo visit yesterday and the doctor thinks she's going toward hypo after 8 weeks of Tapazole, 10 mg. twice a day. Not only has he not even mentioned RAI as a possibility, but his opinion was that if she could go that quickly from hyper to hypo, he believes she will NEVER need think of surgery or RAI, that she can be successfully treated with ATDs. We're waiting for the blood tests to come back but he's looking at lowering her dose to get her levels right on target. So, yes, I believe your doctor is out of line. Stay strong in what you believe you need. It sounds as if your numbers changed as rapidly as Amy's did, albeit on a higher dose of ATD. Amy's Pam Quote Link to comment Share on other sites More sharing options...
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