Guest guest Posted December 24, 2008 Report Share Posted December 24, 2008 My advice (remember it is free so take it for that) is do NOT have the surgery in the wrist. Try joint injections, a biologic agent, more OT, water therapy, heat, the fluido machine,. you name it---but not surgery. I bet with more aggressive therapy and medications you can get that wrist a moving. e, mom to " joe " 21 poly/lupus who is SO grateful she had Remicaid today so she will feel better for Christmas From: hendricksonhouseful <nuestrasenora@...> Subject: RE: newbie question Date: Tuesday, December 23, 2008, 9:54 AM She is seeing an OT for her wrist and she has gained some forward motion. But it is locked going back and to the side. She has about 10 more days to see if the methotrexate can reduce the inflammation and unlock it. I don't think they are talking about a steroid injection. I think he wants to have an orthopedic surgeon do a soft tissue release surgery and repair the damaged tissue in her wrist joint. It's weird to see the pain come and go. It'd be nice if the whole disease was more clear cut, but I guess this is the roller coaster ride that I'm in for, isn't it? Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2008 Report Share Posted December 24, 2008 I second that opinion!! (n, 19, systemic) On Dec 23, 2008, at 10:04 PM, bound for london wrote: > My advice (remember it is free so take it for that) is do NOT have > the surgery in the wrist. Try joint injections, a biologic agent, > more OT, water therapy, heat, the fluido machine,. you name it--- > but not surgery. I bet with more aggressive therapy and medications > you can get that wrist a moving. > > e, mom to " joe " 21 poly/lupus who is SO grateful she had > Remicaid today so she will feel better for Christmas > > > From: hendricksonhouseful <nuestrasenora@...> > Subject: RE: newbie question > > Date: Tuesday, December 23, 2008, 9:54 AM > > She is seeing an OT for her wrist and she has gained some forward > motion. > > But it is locked going back and to the side. She has about 10 more > days to > > see if the methotrexate can reduce the inflammation and unlock it. > I don't > > think they are talking about a steroid injection. I think he wants > to have > > an orthopedic surgeon do a soft tissue release surgery and repair the > > damaged tissue in her wrist joint. > > It's weird to see the pain come and go. It'd be nice if the whole > disease > > was more clear cut, but I guess this is the roller coaster ride > that I'm in > > for, isn't it? > > Amy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2008 Report Share Posted December 24, 2008 So I’m probably naïve here, but why not surgery? It sounds like it would be an outpatient thing, and she would just be sedated, not general anesthesia. I’m all for the steroid injection if that would work, but I am just curious as to why you recommend against surgery. Too aggressive, too soon? Amy RE: newbie question @group <mailto: %40> s.com Date: Tuesday, December 23, 2008, 9:54 AM She is seeing an OT for her wrist and she has gained some forward motion. But it is locked going back and to the side. She has about 10 more days to see if the methotrexate can reduce the inflammation and unlock it. I don't think they are talking about a steroid injection. I think he wants to have an orthopedic surgeon do a soft tissue release surgery and repair the damaged tissue in her wrist joint. It's weird to see the pain come and go. It'd be nice if the whole disease was more clear cut, but I guess this is the roller coaster ride that I'm in for, isn't it? Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2008 Report Share Posted December 25, 2008 Yes, way too aggressive and way too soon. Surgery should always be a last resort. It should never be used unless everything else has been tried--unless it is an obvious emergency such as a bursting appendix or something. Soft tissue releases are not as easy as the doctor may have said---the therapy, the recovery etc to heal. Also things such as surgery can really irritate the inflammation and set off other problems. I have seen a lot of contractures be managed with splints, therapies, medications, joint injections, etc and they will return to full function especially in a child whose body is still growing and changing. And even in adults. Surgery, even if considered minor, should be a last resort. There is so much more to be done before surgery should be considered. Methotrexate is a great drug but a slow acting one. There are biologic agents out there too. I can't remember the age of the child in question but if she is school age she can qualify for therapy, splints etc at school (in the States---I know nothing about other countries). even if preschool age there are programs out there. A good orthopedic surgeon would not even consider the surgery until other things have been tried such as the joint injections, multiple therapies and medications. Hope that makes some sense. It is 2:30 in the morning, it is Christmas and I am sick so my brain is fuzzy with Benadryl at the moment. e, mom to 'joe' 21 poly/lupus From: hendricksonhouseful <nuestrasenora@ <mailto:nuestraseno ra%40twol. com> twol.com> Subject: RE: newbie question @group <mailto:jra- list%40grou ps.com> s.com Date: Tuesday, December 23, 2008, 9:54 AM She is seeing an OT for her wrist and she has gained some forward motion. But it is locked going back and to the side. She has about 10 more days to see if the methotrexate can reduce the inflammation and unlock it. I don't think they are talking about a steroid injection. I think he wants to have an orthopedic surgeon do a soft tissue release surgery and repair the damaged tissue in her wrist joint. It's weird to see the pain come and go. It'd be nice if the whole disease was more clear cut, but I guess this is the roller coaster ride that I'm in for, isn't it? Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2008 Report Share Posted December 25, 2008 Amy, e is right on the mark. And she said it beautifully. Don't even consider surgery at this point. Try joint injections. (n, 19, systemic) On Dec 25, 2008, at 2:29 AM, bound for london wrote: > Yes, way too aggressive and way too soon. Surgery should always be > a last resort. It should never be used unless everything else has > been tried--unless it is an obvious emergency such as a bursting > appendix or something. Soft tissue releases are not as easy as the > doctor may have said---the therapy, the recovery etc to heal. Also > things such as surgery can really irritate the inflammation and set > off other problems. I have seen a lot of contractures be managed > with splints, therapies, medications, joint injections, etc and > they will return to full function especially in a child whose body > is still growing and changing. And even in adults. Surgery, even if > considered minor, should be a last resort. There is so much more to > be done before surgery should be considered. > > Methotrexate is a great drug but a slow acting one. There are > biologic agents out there too. I can't remember the age of the > child in question but if she is school age she can qualify for > therapy, splints etc at school (in the States---I know nothing > about other countries). even if preschool age there are programs > out there. A good orthopedic surgeon would not even consider the > surgery until other things have been tried such as the joint > injections, multiple therapies and medications. > > Hope that makes some sense. It is 2:30 in the morning, it is > Christmas and I am sick so my brain is fuzzy with Benadryl at the > moment. > > e, mom to 'joe' 21 poly/lupus > > > > From: hendricksonhouseful <nuestrasenora@ <mailto:nuestraseno ra% > 40twol. com> > > twol.com> > > Subject: RE: newbie question > > @group <mailto:jra- list%40grou ps.com> s.com > > Date: Tuesday, December 23, 2008, 9:54 AM > > > > She is seeing an OT for her wrist and she has gained some forward > motion. > > > > But it is locked going back and to the side. She has about 10 more > days to > > > > see if the methotrexate can reduce the inflammation and unlock it. > I don't > > > > think they are talking about a steroid injection. I think he wants > to have > > > > an orthopedic surgeon do a soft tissue release surgery and repair the > > > > damaged tissue in her wrist joint. > > > > It's weird to see the pain come and go. It'd be nice if the whole > disease > > > > was more clear cut, but I guess this is the roller coaster ride > that I'm in > > > > for, isn't it? > > > > Amy > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2008 Report Share Posted December 26, 2008 Hi Amy, If possible, I would try to hold off longer on Lucy's wrist. It can often takes weeks to months for the effectiveness of Methotrexate to become fully apparent. It really can take a long time for it to make a difference and if your daughter just began seeing a rheumatologist this month, I think it's way too soon to even consider such a drastic and invasive treatment. You'd be shocked at the difference the right meds can make. Really and truly. Before my son was even diagnosed with arthritis (systemic JIA) I had a friend whose mother had RA. Basically untreated RA, I might add. Her body bore the ravages of the disease. Her hands and fingers, elbows and knees, and feet and toes, were severely deformed from the disease. She needed full time caregivers to help with a slew of everyday tasks that she was no longer able to perform. When my son got sick, he had the full on systemic features of the disease AND the joint issues. I was so tearful and distressed when Josh began to get huge nodules on both his wrists and ankles. In my mind, the treatment was not working and his now his body was being ravaged just like my friend's Moms. His perfect little body would never be the same again, or so I thought. Well, even though sometimes the nodules lasted for months at a time, and even though he lost mobility in those affected joints, and even though those hard lumps and bumps were sometimes larger even than the body's normal joint bumps, each and every time he's ever had them ... they've disappeared. When his arthritis is active, they appear sometimes. When the arthritis is being well-controlled by the meds, they go away. They are not soft, fluid filled, cysts. Or appear not to be. They're hard as bone, like typical rheumatoid nodules. They are not always permanent, if you're taking arthritis meds. Once the arthritis is being controlled again, after they run their course, mobility is again increased. At least it has been, in my son's case. I wouldn't jump the gun on it. Seems like, if I'm understanding correctly, your daughter only just began treatment for arthritis. Two months ago? As much as we'd hope to catch this ASAP and get everything controlled real quick so we could get back to 'normal' right away, it doesn't always work on our timetable. Patience is a virtue and our child having arthritis will certainly try our patience at times but hopefully also help us to learn better how to be patient while waiting for results. Maybe? Occupational therapists, unless they've had lots of experience with children with arthritis, may be more result-orientated. Like, after an accident, a person who has limitations may go expressly trying to recover some of those lost functions. For a child with arthritis, it's a bit different. The body changes depending on disease activity. One particular joint may be affected at one time and that same joint may be completely or nearly completely healed in a matter of a few weeks or months, and the arthritis may then be active in a different, unrelated, joint. At least in my son's case. When his ankles got to be so bad that we were planning on doing steroid injections in them, we started the process of seeing the orthopedic guy. Living on an island, it takes a bit more time. By the time the doc was doing his next scheduled island visit, my son's ankles were completely better. Pain was gone. Mobility much/drastically improved. The nodules had disappeared! However ... a couple weeks later, they were growing/showing up on his wrists! No need for the injection, really. It was just a matter of time. I might have been willing, very early on, to schedule a surgery for him, if it would have taken away the unsightly bumps and helped him be able to move his hands (or feet) better. But ... it would have been unnecessary. Please keep us updated on how Lucy is doing. Try to have the rheumatologist conference with the OT. And most importantly, take things one day at a time ... if you're able. It is a roller coaster ride at times and sometimes you'll want to get off. But sometimes you get to that place where you're coasting along gently and are able to enjoy the ride ... until the next bump or curve : ) Happy Holidays, Georgina RE: newbie question She is seeing an OT for her wrist and she has gained some forward motion. But it is locked going back and to the side. She has about 10 more days to see if the methotrexate can reduce the inflammation and unlock it. I don't think they are talking about a steroid injection. I think he wants to have an orthopedic surgeon do a soft tissue release surgery and repair the damaged tissue in her wrist joint. It's weird to see the pain come and go. It'd be nice if the whole disease was more clear cut, but I guess this is the roller coaster ride that I'm in for, isn't it? Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2008 Report Share Posted December 26, 2008 Georgina, It's the rheumatologist who wants the surgery, not the OT. I'm in Colorado and he has been in practice for over 20 years. He's one of only 3 pediatric rheumatologists in the state. I've been told he's the best. I'm new to all of this and I don't know what questions to ask, what direction to go? I love my E-groups and have gotten so much wisdom from virtual friends over the years. So I value your input. But I'm such a newbie to the world of JA that it's difficult to go up against the experts. Lucy is supposed to have a sleep over at her Grandma's (my mom) on Monday. Today, at Christmas dinner, my mom saw how much pain Lucy is in and told me that she can't have her come stat if she is going to be in pain. " She " can't handle it. Hmphhh. My mom's got way too many dysfunctions for this email, lol. But it makes me sad. Amy Re: newbie question Hi Amy, If possible, I would try to hold off longer on Lucy's wrist. It can often takes weeks to months for the effectiveness of Methotrexate to become fully apparent. It really can take a long time for it to make a difference and if your daughter just began seeing a rheumatologist this month, I think it's way too soon to even consider such a drastic and invasive treatment. You'd be shocked at the difference the right meds can make. Really and truly. Before my son was even diagnosed with arthritis (systemic JIA) I had a friend whose mother had RA. Basically untreated RA, I might add. Her body bore the ravages of the disease. Her hands and fingers, elbows and knees, and feet and toes, were severely deformed from the disease. She needed full time caregivers to help with a slew of everyday tasks that she was no longer able to perform. When my son got sick, he had the full on systemic features of the disease AND the joint issues. I was so tearful and distressed when Josh began to get huge nodules on both his wrists and ankles. In my mind, the treatment was not working and his now his body was being ravaged just like my friend's Moms. His perfect little body would never be the same again, or so I thought. Well, even though sometimes the nodules lasted for months at a time, and even though he lost mobility in those affected joints, and even though those hard lumps and bumps were sometimes larger even than the body's normal joint bumps, each and every time he's ever had them ... they've disappeared. When his arthritis is active, they appear sometimes. When the arthritis is being well-controlled by the meds, they go away. They are not soft, fluid filled, cysts. Or appear not to be. They're hard as bone, like typical rheumatoid nodules. They are not always permanent, if you're taking arthritis meds. Once the arthritis is being controlled again, after they run their course, mobility is again increased. At least it has been, in my son's case. I wouldn't jump the gun on it. Seems like, if I'm understanding correctly, your daughter only just began treatment for arthritis. Two months ago? As much as we'd hope to catch this ASAP and get everything controlled real quick so we could get back to 'normal' right away, it doesn't always work on our timetable. Patience is a virtue and our child having arthritis will certainly try our patience at times but hopefully also help us to learn better how to be patient while waiting for results. Maybe? Occupational therapists, unless they've had lots of experience with children with arthritis, may be more result-orientated. Like, after an accident, a person who has limitations may go expressly trying to recover some of those lost functions. For a child with arthritis, it's a bit different. The body changes depending on disease activity. One particular joint may be affected at one time and that same joint may be completely or nearly completely healed in a matter of a few weeks or months, and the arthritis may then be active in a different, unrelated, joint. At least in my son's case. When his ankles got to be so bad that we were planning on doing steroid injections in them, we started the process of seeing the orthopedic guy. Living on an island, it takes a bit more time. By the time the doc was doing his next scheduled island visit, my son's ankles were completely better. Pain was gone. Mobility much/drastically improved. The nodules had disappeared! However ... a couple weeks later, they were growing/showing up on his wrists! No need for the injection, really. It was just a matter of time. I might have been willing, very early on, to schedule a surgery for him, if it would have taken away the unsightly bumps and helped him be able to move his hands (or feet) better. But ... it would have been unnecessary. Please keep us updated on how Lucy is doing. Try to have the rheumatologist conference with the OT. And most importantly, take things one day at a time .... if you're able. It is a roller coaster ride at times and sometimes you'll want to get off. But sometimes you get to that place where you're coasting along gently and are able to enjoy the ride ... until the next bump or curve : ) Happy Holidays, Georgina RE: newbie question She is seeing an OT for her wrist and she has gained some forward motion. But it is locked going back and to the side. She has about 10 more days to see if the methotrexate can reduce the inflammation and unlock it. I don't think they are talking about a steroid injection. I think he wants to have an orthopedic surgeon do a soft tissue release surgery and repair the damaged tissue in her wrist joint. It's weird to see the pain come and go. It'd be nice if the whole disease was more clear cut, but I guess this is the roller coaster ride that I'm in for, isn't it? Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2008 Report Share Posted December 26, 2008 Amy, I pray that things will go well for you. It is always sad to hear of? another child that has been diagnosed with JRA but I am glad you found this site. There are so many wonderful people here to give you information. The most wonderful thing about this group of people is the support they will give you on top of the valuable information. I am glad you have?a good doctor that you feel comfortable and confident with. Veri & Jaye 14 poly Re: newbie question Hi Amy, If possible, I would try to hold off longer on Lucy's wrist. It can often takes weeks to months for the effectiveness of Methotrexate to become fully apparent. It really can take a long time for it to make a difference and if your daughter just began seeing a rheumatologist this month, I think it's way too soon to even consider such a drastic and invasive treatment. You'd be shocked at the difference the right meds can make. Really and truly. Before my son was even diagnosed with arthritis (systemic JIA) I had a friend whose mother had RA. Basically untreated RA, I might add. Her body bore the ravages of the disease. Her hands and fingers, elbows and knees, and feet and toes, were severely deformed from the disease. She needed full time caregivers to help with a slew of everyday tasks that she was no longer able to perform. When my son got sick, he had the full on systemic features of the disease AND the joint issues. I was so tearful and distressed when Josh began to get huge nodules on both his wrists and ankles. In my mind, the treatment was not working and his now his body was being ravaged just like my friend's Moms. His perfect little body would never be the same again, or so I thought. Well, even though sometimes the nodules lasted for months at a time, and even though he lost mobility in those affected joints, and even though those hard lumps and bumps were sometimes larger even than the body's normal joint bumps, each and every time he's ever had them ... they've disappeared. When his arthritis is active, they appear sometimes. When the arthritis is being well-controlled by the meds, they go away. They are not soft, fluid filled, cysts. Or appear not to be. They're hard as bone, like typical rheumatoid nodules. They are not always permanent, if you're taking arthritis meds. Once the arthritis is being controlled again, after they run their course, mobility is again increased. At least it has been, in my son's case. I wouldn't jump the gun on it. Seems like, if I'm understanding correctly, your daughter only just began treatment for arthritis. Two months ago? As much as we'd hope to catch this ASAP and get everything controlled real quick so we could get back to 'normal' right away, it doesn't always work on our timetable. Patience is a virtue and our child having arthritis will certainly try our patience at times but hopefully also help us to learn better how to be patient while waiting for results. Maybe? Occupational therapists, unless they've had lots of experience with children with arthritis, may be more result-orientated. Like, after an accident, a person who has limitations may go expressly trying to recover some of those lost functions. For a child with arthritis, it's a bit different. The body changes depending on disease activity. One particular joint may be affected at one time and that same joint may be completely or nearly completely healed in a matter of a few weeks or months, and the arthritis may then be active in a different, unrelated, joint. At least in my son's case. When his ankles got to be so bad that we were planning on doing steroid injections in them, we started the process of seeing the orthopedic guy. Living on an island, it takes a bit more time. By the time the doc was doing his next scheduled island visit, my son's ankles were completely better. Pain was gone. Mobility much/drastically improved. The nodules had disappeared! However ... a couple weeks later, they were growing/showing up on his wrists! No need for the injection, really. It was just a matter of time. I might have been willing, very early on, to schedule a surgery for him, if it would have taken away the unsightly bumps and helped him be able to move his hands (or feet) better. But ... it would have been unnecessary. Please keep us updated on how Lucy is doing. Try to have the rheumatologist conference with the OT. And most importantly, take things one day at a time .... if you're able. It is a roller coaster ride at times and sometimes you'll want to get off. But sometimes you get to that place where you're coasting along gently and are able to enjoy the ride ... until the next bump or curve : ) Happy Holidays, Georgina RE: newbie question She is seeing an OT for her wrist and she has gained some forward motion. But it is locked going back and to the side. She has about 10 more days to see if the methotrexate can reduce the inflammation and unlock it. I don't think they are talking about a steroid injection. I think he wants to have an orthopedic surgeon do a soft tissue release surgery and repair the damaged tissue in her wrist joint. It's weird to see the pain come and go. It'd be nice if the whole disease was more clear cut, but I guess this is the roller coaster ride that I'm in for, isn't it? Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2008 Report Share Posted December 26, 2008 Sorry to hear your mom would react like that to the child's pain. Sounds like she does have her own issues. A child feels weird and different enough having this disease (or any) and could really use all the support they can get. I hope your mom will realize how much her granddaughter needs her too. I'm curious what exactly the surgery the dr proposed would entail? Is he talking about fusing her wrists or something? Or doing some sort of cartilage scrape? I would get all the details and do some research before I ok'd surgery. I do agree with the others that joint injections (which are done outpatient and under anesthesia) would be a good first step. But as always, you must do what your heart tells you is right for your child. Again, I would research anything first. Please let us know how it all goes, Michele ( 21, spondy) ________________________________ From: [mailto: ] On Behalf Of hendricksonhouseful Sent: Thursday, December 25, 2008 8:51 PM Subject: RE: newbie question Georgina, It's the rheumatologist who wants the surgery, not the OT. I'm in Colorado and he has been in practice for over 20 years. He's one of only 3 pediatric rheumatologists in the state. I've been told he's the best. I'm new to all of this and I don't know what questions to ask, what direction to go? I love my E-groups and have gotten so much wisdom from virtual friends over the years. So I value your input. But I'm such a newbie to the world of JA that it's difficult to go up against the experts. Lucy is supposed to have a sleep over at her Grandma's (my mom) on Monday. Today, at Christmas dinner, my mom saw how much pain Lucy is in and told me that she can't have her come stat if she is going to be in pain. " She " can't handle it. Hmphhh. My mom's got way too many dysfunctions for this email, lol. But it makes me sad. Amy Re: newbie question Hi Amy, If possible, I would try to hold off longer on Lucy's wrist. It can often takes weeks to months for the effectiveness of Methotrexate to become fully apparent. It really can take a long time for it to make a difference and if your daughter just began seeing a rheumatologist this month, I think it's way too soon to even consider such a drastic and invasive treatment. You'd be shocked at the difference the right meds can make. Really and truly. Before my son was even diagnosed with arthritis (systemic JIA) I had a friend whose mother had RA. Basically untreated RA, I might add. Her body bore the ravages of the disease. Her hands and fingers, elbows and knees, and feet and toes, were severely deformed from the disease. She needed full time caregivers to help with a slew of everyday tasks that she was no longer able to perform. When my son got sick, he had the full on systemic features of the disease AND the joint issues. I was so tearful and distressed when Josh began to get huge nodules on both his wrists and ankles. In my mind, the treatment was not working and his now his body was being ravaged just like my friend's Moms. His perfect little body would never be the same again, or so I thought. Well, even though sometimes the nodules lasted for months at a time, and even though he lost mobility in those affected joints, and even though those hard lumps and bumps were sometimes larger even than the body's normal joint bumps, each and every time he's ever had them ... they've disappeared. When his arthritis is active, they appear sometimes. When the arthritis is being well-controlled by the meds, they go away. They are not soft, fluid filled, cysts. Or appear not to be. They're hard as bone, like typical rheumatoid nodules. They are not always permanent, if you're taking arthritis meds. Once the arthritis is being controlled again, after they run their course, mobility is again increased. At least it has been, in my son's case. I wouldn't jump the gun on it. Seems like, if I'm understanding correctly, your daughter only just began treatment for arthritis. Two months ago? As much as we'd hope to catch this ASAP and get everything controlled real quick so we could get back to 'normal' right away, it doesn't always work on our timetable. Patience is a virtue and our child having arthritis will certainly try our patience at times but hopefully also help us to learn better how to be patient while waiting for results. Maybe? Occupational therapists, unless they've had lots of experience with children with arthritis, may be more result-orientated. Like, after an accident, a person who has limitations may go expressly trying to recover some of those lost functions. For a child with arthritis, it's a bit different. The body changes depending on disease activity. One particular joint may be affected at one time and that same joint may be completely or nearly completely healed in a matter of a few weeks or months, and the arthritis may then be active in a different, unrelated, joint. At least in my son's case. When his ankles got to be so bad that we were planning on doing steroid injections in them, we started the process of seeing the orthopedic guy. Living on an island, it takes a bit more time. By the time the doc was doing his next scheduled island visit, my son's ankles were completely better. Pain was gone. Mobility much/drastically improved. The nodules had disappeared! However ... a couple weeks later, they were growing/showing up on his wrists! No need for the injection, really. It was just a matter of time. I might have been willing, very early on, to schedule a surgery for him, if it would have taken away the unsightly bumps and helped him be able to move his hands (or feet) better. But ... it would have been unnecessary. Please keep us updated on how Lucy is doing. Try to have the rheumatologist conference with the OT. And most importantly, take things one day at a time .... if you're able. It is a roller coaster ride at times and sometimes you'll want to get off. But sometimes you get to that place where you're coasting along gently and are able to enjoy the ride ... until the next bump or curve : ) Happy Holidays, Georgina RE: newbie question She is seeing an OT for her wrist and she has gained some forward motion. But it is locked going back and to the side. She has about 10 more days to see if the methotrexate can reduce the inflammation and unlock it. I don't think they are talking about a steroid injection. I think he wants to have an orthopedic surgeon do a soft tissue release surgery and repair the damaged tissue in her wrist joint. It's weird to see the pain come and go. It'd be nice if the whole disease was more clear cut, but I guess this is the roller coaster ride that I'm in for, isn't it? Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2009 Report Share Posted January 3, 2009 Welcome! What a great way to start a new year - with a band! PB mans " productive burp " or " bandster barf " - a small (usually) barf when we have overreaten or somehow otherwise forgotten a band rule. they can also be big and painfulo, like a real vomit. definitely to be avoided, for both comfort and band safety reasons. we all have a few as we learn/forget the rules, but too many can cause band slips. Ther is a whole lengthy document in the files here called " Abbreviations " that will be useful - there are lots of odd terms we use. Glad you found us! Sandy r > > Hi! I'm a brand new bandster as of 12/30 and have been reading up on > what to expect. I keep seeing references to pb and sliming and don't > know what those are. Probably not peanut butter or Pottery Barn! > > Thanks! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2009 Report Share Posted January 3, 2009 productive burp and sliming is when, as Sandy said, you eat too much or eat too big of a bite, or don't chew well enough. You know what it feels like when you are sick and you keep fighting throwing up. All the saliva in your mouth, you keep swallowing and swallowing fighting that feeling. Well, my experiences have been like that. All that builds up along with the stomach fluids trying to help it pass... it has to go somewhere... thus it comes back up. It is like throwing up slime. It has only happened a couple of times to me. It has not been like " throwing up from your toes " / violent kind of throw up. Just like a hard burp and up it comes. Word of caution. If you think something is going to happen get away from family and friends and table quickly... When it decides to come up ... it will. You can't hold it down and run to the the bathroom... Hope this helps. There are some band videos ... good and bad on you tube. Burson Pampered Chef Independent Consultant http://www.pamperedchef.biz/carrieb ________________________________ From: sunny_az_blonde <gailp@...> Sent: Saturday, January 3, 2009 8:55:58 AM Subject: Newbie question Hi! I'm a brand new bandster as of 12/30 and have been reading up on what to expect. I keep seeing references to pb and sliming and don't know what those are. Probably not peanut butter or Pottery Barn! Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2009 Report Share Posted January 3, 2009 Hi, I am . I was banded on August 4th. Tomorrow is my 5 month bandiversary. I finally hit restriction the Tuesday before Thanksgiving. I had lost about 28 # with liquid preop and the restricted diet for a month after. Then I came to a stand still and gained/lost 3-5 # for 2 months. Not sure how much I';ve lost since then, but I have. I got on the scales at home (just got them for Christmas) and according to them I have lost 8 or 10 # since the Tuesday before Thanksgiving. At 09:55 AM 1/3/2009, you wrote: >Hi! I'm a brand new bandster as of 12/30 and have been reading up on >what to expect. I keep seeing references to pb and sliming and don't >know what those are. Probably not peanut butter or Pottery Barn! > >Thanks! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2009 Report Share Posted January 3, 2009 Welcome! you're doing great now! it's very tough to lose over the holidays, but you did anyway.. way to go! please go over the recent poost called " What is a good fill? " to be sue yu are not TOO tight. newer people sometmes think good restriction means barely able to eat a thing, and this is not only incorrect, it's very very dangerous. Glad you're with us! Sandy r > > Hi, I am . I was banded on August 4th. Tomorrow is my 5 month > bandiversary. I finally hit restriction the Tuesday before > Thanksgiving. I had lost about 28 # with liquid preop and the > restricted diet for a month after. Then I came to a stand still and > gained/lost 3-5 # for 2 months. Not sure how much I';ve lost since > then, but I have. I got on the scales at home (just got them for > Christmas) and according to them I have lost 8 or 10 # since the > Tuesday before Thanksgiving. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2009 Report Share Posted January 3, 2009 Sandy, I've been here for months. I was just saying hi to the newbie. At 03:51 PM 1/3/2009, you wrote: >Welcome! you're doing great now! it's very tough to lose over the >holidays, but you did anyway.. way to go! >please go over the recent poost called " What is a good fill? " to be >sue yu are not TOO tight. newer people sometmes think good >restriction means barely able to eat a thing, and this is not only >incorrect, it's very very dangerous. > >Glad you're with us! > >Sandy r > > > > > Hi, I am . I was banded on August 4th. Tomorrow is my 5 >month > > bandiversary. I finally hit restriction the Tuesday before > > Thanksgiving. I had lost about 28 # with liquid preop and the > > restricted diet for a month after. Then I came to a stand still and > > gained/lost 3-5 # for 2 months. Not sure how much I';ve lost since > > then, but I have. I got on the scales at home (just got them for > > Christmas) and according to them I have lost 8 or 10 # since the > > Tuesday before Thanksgiving. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2009 Report Share Posted January 3, 2009 Hi all, I rarely post but wanted to say to I was also banded August 4. It seems like a slow process but I'm working at it, as you are. I haven't been able to walk much but do water exercises 3 times a week. Dr. says when you are 60 your metabolism is in the tank so it takes extra work - my back just won't let me. My first fill wasn't until Nov. 14. Since then I have to watch eating speed and chewing well or the PB's get me. I still can't tell when I am really full. I see the dr. again next week and I know he will be upset with me because I haven't really lost anything since the fill. I have lost inches going from a 24W down to an 18W. The hardest part about this whole thing is not drinking anything during or an hour after eating. Take care all and have a successful banded New Year. Margaret 260-254-223-150 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2009 Report Share Posted January 3, 2009 Hi, Margaret - good to see you pipe up! :-) the first 1-2 fills are not even meant to be enough, and lots of us don't lose much, and i know your doc understands this. it takes most people 3-5 small monthly - 6 week fills to get to a pretty good restriction when we will start to lose well. it's important to creep up slowly with fills, so the stomach barely notices. but, my gosh, 24 down to 18 already is wonderful!! the scale is only one of many ways to measure success - and the least important. Better health, fewer meds, nice clothes, better self-image are all much more important. i just turned 60, and the metabolism surely dos not have to be in the tank. It depends how healthy we keep it, with good eating and good activity. Dan here is WAAAAAAAY older than you and I (tee hee, he is out in the S. pacific somewhere an will not see this for a good while, I hope) ) and runs marathons and plays raquetball and surely also is not tanked. Exercise and activity are even more important at " our " age. even with bad knees, hips, etc there are always SOME forms of exercise that we can do. It IS had not to drink for that hour after a meal , but if we stay VERY well hydrated before and after meals, it won't be so bad. Bandsters need 80-100 oz a day minimum, sipped througout the day. then, drink a big glass in the 15 minutes or so right before a meal - right up to the time you begin to eat - and this will help quench thirst, and lubricate the mouth and throat so it's easier not to drink. I also think it's ok to have a small sip or two during a mal to keep the throat lubricated. Most foods also help. Has your doc or his staff taught you about the 'soft stop' signs ? see the next post. these are the clues to when we must stop eating. " Full " is the term we use, but it is a poor one for banding. the correct term is simply " satisfied " - not FULL at all, in the sense we were before - which usually meant stuffed and uncomfortable. " Satisfied " is more like " Ok, i'm happy here..i could eat more, but no need to. comfortable, not hungry any longer. " you can get a bit more fill when you have adjusted well to this one, with very few pb's any longer. you're clearly doing well i you have lost all hiose inches - and the best is yet to come! sandy r > > Hi all, > I rarely post but wanted to say to I was also banded August 4. It seems like a slow > process but I'm working at it, as you are. I haven't been able to walk much but do water > exercises 3 times a week. Dr. says when you are 60 your metabolism is in the tank so it takes > extra work - my back just won't let me. > My first fill wasn't until Nov. 14. Since then I have to watch eating speed and chewing well or > the PB's get me. I still can't tell when I am really full. I see the dr. again next week and I know > he will be upset with me because I haven't really lost anything since the fill. I have lost > inches going from a 24W down to an 18W. > The hardest part about this whole thing is not drinking anything during or an hour after > eating. > Take care all and have a successful banded New Year. > Margaret > 260-254-223-150 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 Well, Hi Margaret. Today is our 5 month bandiversary. You are right about it being slow, but that is okay. Sometimes I can tell when I am full. The funny thing is, I get my loud hiccup about 10 to 15 minutes after I stop eating. I am 45 and my metabolism has never been good. I have arthritis very bad in my feet and shoulders, so exercise is difficult. My oldest son just moved out, so I am going to put the tony little gazel in his room and see how I do with that. I do swim in the summer. I am in PA so our swim season is short. Eating speed and chewing arewwhere I have to watch the most too. I try to drink right up until I eat. I sometimes need a small sip during the meal if something is really salthy. Good luck. At 07:46 PM 1/3/2009, you wrote: >Hi all, >I rarely post but wanted to say to I was also banded August >4. It seems like a slow >process but I'm working at it, as you are. I haven't been able to >walk much but do water >exercises 3 times a week. Dr. says when you are 60 your metabolism >is in the tank so it takes >extra work - my back just won't let me. >My first fill wasn't until Nov. 14. Since then I have to watch >eating speed and chewing well or >the PB's get me. I still can't tell when I am really full. I see the >dr. again next week and I know >he will be upset with me because I haven't really lost anything >since the fill. I have lost >inches going from a 24W down to an 18W. >The hardest part about this whole thing is not drinking anything >during or an hour after >eating. >Take care all and have a successful banded New Year. >Margaret >260-254-223-150 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 > > >Hi all, > >I rarely post but wanted to say to I was also banded August > >4. It seems like a slow > >process but I'm working at it, as you are. I haven't been able to > >walk much but do water > >exercises 3 times a week. Dr. says when you are 60 your metabolism > >is in the tank so it takes > >extra work - my back just won't let me. > >My first fill wasn't until Nov. 14. Since then I have to watch > >eating speed and chewing well or > >the PB's get me. I still can't tell when I am really full. I see the > >dr. again next week and I know > >he will be upset with me because I haven't really lost anything > >since the fill. I have lost > >inches going from a 24W down to an 18W. > >The hardest part about this whole thing is not drinking anything > >during or an hour after > >eating. > >Take care all and have a successful banded New Year. > >Margaret > >260-254-223-150 > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 I'm in Marblehead, OH, which is on Lake Erie. I also get that loud hiccup - my husband just laughs then asks if I am OK - Arthritis is my biggest enemy but I decided I am going to use a recumbent bike. Our local hospital has a wellness program, you can use the pool, which I do, or the floor equipment. I hope to start doing both in a few weeks. My last daughter is getting married the 24th and then I should have more time. It was fun ordering my dress. I ordered right after Thanksgiving and got one size smaller than I was wearing. When the dress came in it was just about perfect. My doc was supposed to have a support group but just as I was to go to it the RN in charge quit and it has not restarted yet. I really appreciate this sight with all the info. It seems if I have a problem it is addressed here somewhere. Have a great day. Margaret > > > > >Hi all, > > >I rarely post but wanted to say to I was also banded August > > >4. It seems like a slow > > >process but I'm working at it, as you are. I haven't been able to > > >walk much but do water > > >exercises 3 times a week. Dr. says when you are 60 your metabolism > > >is in the tank so it takes > > >extra work - my back just won't let me. > > >My first fill wasn't until Nov. 14. Since then I have to watch > > >eating speed and chewing well or > > >the PB's get me. I still can't tell when I am really full. I see > the > > >dr. again next week and I know > > >he will be upset with me because I haven't really lost anything > > >since the fill. I have lost > > >inches going from a 24W down to an 18W. > > >The hardest part about this whole thing is not drinking anything > > >during or an hour after > > >eating. > > >Take care all and have a successful banded New Year. > > >Margaret > > >260-254-223-150 > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 Alana - We have a special deal with Dr. Brownstein (who is a friend of mine) to get 10% off your total order of his books from his website www.drbrownstein.com until the end of March. I would recommend doing that. One drop 2x a week is pathetically low for what your body requires. That would be about 2.5 mgs per drop. I take 100 mgs / day. Others take 50 mgs. The Iodoral tablets come in 12.5 and 50 mg tablets. That is the pill form of Lugol's. I do advise reading the Iodine book so that you can understand why it is good. You can also read the research on Dr. Abraham's website www.optimox.com Re: Re: MTHFRare you referring to Carl Pfieiffer? I saw him at Brain Bio Center in Princeton NJ. I was so sick after a partial thyroidectomy and no meds. I lost 30 years of my life and am only alive today b/c I got a computer.my mother and sisters struggle with mental illness.Gracia No virus found in this incoming message.Checked by AVG - www.avg.com Version: 8.0.237 / Virus Database: 270.11.8/1985 - Release Date: 03/05/09 07:54:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2009 Report Share Posted August 13, 2009 This website may answer some of your questions: http://tinyurl.com/pklso7 For pancreatic cancer have you also researched Dr. J. - high dose porcine-based pancreatic enzyme therapy? http://www.dr-gonzalez.com/clinical_pearls.htm Dotsie In a message dated 8/13/2009 11:14:59 A.M. Eastern Daylight Time, mikeleekc01@... writes: My wife has pancreatic cancer and I have put her on Sutherlandia OPC (an oleander plant extract), Budwig diet, and H2O2 by inhalation. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2009 Report Share Posted August 15, 2009 > > Hi Everyone, > I am new to this forum and would like to ask where I can get a complete description of the Beck protocol which includes precautions, compatibility with orally taken drugs etc. The files section should have a copy of the protocol. However watching the videos is a lot of fun too... they're very good. http://video.google.com.au/videosearch?sourceid=navclient & rlz=1T4GGLL_enAU323 & q=\ Bob%20Beck%20electro & um=1 & ie=UTF-8 & sa=N & hl=en & tab=wv# > My wife has pancreatic cancer and I have put her on Sutherlandia OPC (an oleander plant extract), Interesting... Oleander is very toxic to the liver... but that undoubtedly depends on dose. Budwig diet That's a good one... but only half the story. Prof Peskin has the other half: http://www.brianpeskin.com/ and H2O2 by inhalation. Probably much better to take it by ozonating water... at least that was my preferred method after a long time experimenting. > I would like to include the Beck protocol into her treatment. > Are all these compatible? Just remember that the cell wall becomes more porous when you apply a micro current to it. That means medications work better. That's a 2 edged sword... as it also means toxins do to. Therefore don't take your oleander extract at the same time as you use the biotuner. On the other hand you might want to take some of your vitamins at the same time as you use the biotuner. You need to experiment with it to establish what works best. > Thanks > > -- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2009 Report Share Posted August 15, 2009 By popular request they've bought the links section back... and all the links are back. Take a look at some of them. :-) > > > > Hi Everyone, > > I am new to this forum and would like to ask where I can get a complete description of the Beck protocol which includes precautions, compatibility with orally taken drugs etc. > > The files section should have a copy of the protocol. > > However watching the videos is a lot of fun too... they're very good. > > http://video.google.com.au/videosearch?sourceid=navclient & rlz=1T4GGLL_enAU323 & q=\ Bob%20Beck%20electro & um=1 & ie=UTF-8 & sa=N & hl=en & tab=wv# > > > My wife has pancreatic cancer and I have put her on Sutherlandia OPC (an oleander plant extract), > > Interesting... Oleander is very toxic to the liver... but that undoubtedly depends on dose. > > Budwig diet > > That's a good one... but only half the story. > > Prof Peskin has the other half: > > http://www.brianpeskin.com/ > > and H2O2 by inhalation. > > Probably much better to take it by ozonating water... at least that was my preferred method after a long time experimenting. > > > I would like to include the Beck protocol into her treatment. > > Are all these compatible? > > Just remember that the cell wall becomes more porous when you apply a micro current to it. That means medications work better. > > That's a 2 edged sword... as it also means toxins do to. > > Therefore don't take your oleander extract at the same time as you use the biotuner. On the other hand you might want to take some of your vitamins at the same time as you use the biotuner. You need to experiment with it to establish what works best. > > > Thanks > > > > -- > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2010 Report Share Posted January 18, 2010 Everyone needs iodine. You are experiencing bromide detox, which is good! You also need to know how to deal with detox. Are you taking the companion nutrients also? See the following website, and I would suggest you read all the information on the site, not just the bromide detox, and also read from the others listed. http://www.breastcancerchoices.org/bromidedetoxsymptomsandstrategies.html www.naturalthyroidchoices.com Donna in IL I started taking Lugol's recently. Within a few days of taking 25 mg (4-5 drops) per day, I noticed that my nose got runny within an hour of taking. I also got a big edgy. I read on the following Web site that " moisture in nose " is a sign to stop taking iodine. http://www.altcancer.com/lugols.htm Does that mean I do not need iodine or that I'm taking too much? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2010 Report Share Posted December 5, 2010 Hello. I have been reading over the website and I have not found what I am looking for... I have been on thyroid medication (T3 only= cytomel for months) and compounded thyroid medication (t3/T4) since 2005. My doctor has me on cortisol due to low numbers plus bio-identical estrogen, progesterone and testosterone. I am currently weaning off the cortisol and am wondering if it would be a good idea for me to start the candida diet or wait until I am off the cortisol??? Also, I have a nut allergy and have never tried coconut. Do people with nut allergies have a coconut reaction?? Last time I had any kind of nuts, my throat started closing... (now carry an Epi-pen). I am troubled by brain fog and lightheadedness. I already take some of the supplements you recommend. Thank you in advance, Lori Quote Link to comment Share on other sites More sharing options...
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