Guest guest Posted February 21, 2011 Report Share Posted February 21, 2011 I wanted to add to this that there is NO doubt the LOD has pretty much turned my kid's life around. He's a huge diet responder in the first place, but we were fortunate enough to be led to the LOD FIRST, and wow. I wish you could see my kid. When I first started reading about it, I was pretty much in despair because I thought there was just NO way I could get him off his chocolate almond milk (makes me cringe to think about it),do GFCFSFCF, Feingold, everything-free, but just a few months later we were rockin' and rollin' and it's just second nature now. Soon as I see one ingredient I go " Nope. " The ladies over on TLO group are much better cooks than I, but they share like crazy and are amazing like the ones here. We gotta get rid of his parasite infection, deal with thyroid issues, but other than that LOD is all we do. He's had two pretty big regressions in the past year, both times when we tried Nystatin, big shocker, just made that connection a few days ago. Everytime I try one of the " wonder drugs " it backfires, so we just decided hey, lets just keep doing what works. AND LOD WORKS! You'll be happy you tried it, Amy > > > > So how do you know when you should avoid high oxalates? > > > > I strongly suspect I should avoid it with my younger guy. But the older, I > > don't know. > > I hate to cut out stuff like carrots and spinach because there's so much > >benefit > > > > to them. Vitamin C has been a God-send. We rely on peanut butter too, not only > > > > to mix in supps but as a source of protein because beef came back elevated so I > > > > try to watch it. I hate to take these things away if oxolates are not an issue > > > for him. > > > > what signs should I be watching for? > > > > -Tammy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2011 Report Share Posted February 21, 2011 I finally sold gfcf to my husband and he's been awesome. But this, this is going to take some convincing. Do you have a link I can reference for foods that are free of gluten, casein, corn, soy, gmo, oxalate, phenols, salicylates? A bit of sugar is ok. Food coloring is out. I'm frustrated. My little guy went from being a complete fiend about cow's milk to barely drinking any at all, save once in a while to dunk a cookie or two in. Now he's a water guy. Can't get enough. When we decided to go 100% gfcf, I introduced him to almond milk for the calcium and efa's. He loves the stuff. Now I'm hearing that was probably a mistake. wtf?? I'm beginning to feel like the poster child for "What NOT to do"...lmao...Hey, everyone has a special gift : ) I'm considering doing scd this summer when their appetites are low. I don't mind all the cooking and preparing as long as I know I'm not spending so much money and energy making things worse. rrrrr. There could very well be a revolt over gfcf chocolate chip pancakes. You might even see it on the news.... I'll be the one in the straightjacket..... -Tammy To: mb12 valtrex Sent: Mon, February 21, 2011 7:08:44 AMSubject: Re: oxalates I wanted to add to this that there is NO doubt the LOD has pretty much turned my kid's life around. He's a huge diet responder in the first place, but we were fortunate enough to be led to the LOD FIRST, and wow. I wish you could see my kid. When I first started reading about it, I was pretty much in despair because I thought there was just NO way I could get him off his chocolate almond milk (makes me cringe to think about it),do GFCFSFCF, Feingold, everything-free, but just a few months later we were rockin' and rollin' and it's just second nature now. Soon as I see one ingredient I go "Nope." The ladies over on TLO group are much better cooks than I, but they share like crazy and are amazing like the ones here. We gotta get rid of his parasite infection, deal with thyroid issues, but other than that LOD is all we do. He's had two pretty big regressions in the past year, both times when we tried Nystatin, big shocker, just made that connection a few days ago. Everytime I try one of the "wonder drugs" it backfires, so we just decided hey, lets just keep doing what works. AND LOD WORKS! You'll be happy you tried it,Amy> >> > So how do you know when you should avoid high oxalates? > > > > I strongly suspect I should avoid it with my younger guy. But the older, I > > don't know.> > I hate to cut out stuff like carrots and spinach because there's so much > >benefit > >> > to them. Vitamin C has been a God-send. We rely on peanut butter too, not only > >> > to mix in supps but as a source of protein because beef came back elevated so I > >> > try to watch it. I hate to take these things away if oxolates are not an issue > > > for him.> > > > what signs should I be watching for?> > > > -Tammy> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2011 Report Share Posted February 21, 2011 okay so my son just pooed his diaper and there were more clear crystal looking things in it. They aren't hard however more like a jello texture. I first noticed this a couple days ago and the only thing I have changed since Friday is the addition of Activated Charcoal.... So is the dumping a good sign, or a sign that he is consuming things he shouldn't? Can the charcoal help guide these out?? His DAN! doc mentioned the Oxalate Diet earlier this month..... > > > > > > > > Alberta!!!!!!!!!!!!!!!!!! > > > > Yay!!!!!!!!!!!!!!!!!!!!!! That is beyond awesome. I am doing the > > > happy dance > > > > for you, mama!! > > > > > > > > I want to say thank you because 15 minutes ago I was feeling so > > > frustrated and > > > > discouraged that I was ready to throw in the towel and drive my son to > > > pizza > > > > hut. Hearing this put me right back in check. > > > > > > > > > > > Way to go Maia!!!! > > > > > > > > -Tammy > > > > > > > > > > > > > > > > ________________________________ > > > > From: Alberta <gnomederwear@> > > > > > > > To: mb12 valtrex > > > > Sent: Sun, February 20, 2011 7:29:20 PM > > > > Subject: Re: Re: oxalates > > > > > > > >  > > > > I'm on Week 8 of SCD/medium-low oxalates right now. We started two days > > > after > > > > Christmas Day, when Maia was sick and had the flu and didn't eat for 2 > > > days -- I > > > > used that as an opportunity to start her on SCD and reduce oxalates. > > > > > > > > > > > > Each week, I'm seeing absolutely incredible gains I hadn't seen ever with > > > all > > > > the interventions we've done. I've stopped almost all of her > > > supplements right > > > > now except liquid MB12 and CLO. We are also doing some cell food and > > > > chlorophyll on the advice of our DAN. > > > > > > > > We saw a little bit of regression in Weeks 5 to 6 but she had a few weeks > > > of > > > > heavy oxalate dumping. I saw crystals in her stools and urine. A LOT > > > came out > > > > (I had no idea prior to starting this that she even had an oxalate issue > > > -- she > > > > just had chronic loose stools and I couldn't figure out why). > > > > > > > > > > > > Here are the new things I'm seeing in Week 8 that weren't there before: > > > > 1. Verbal imitation -- this is the holy grail I've been chasing for a > > > whole > > > > year. She is imitating certain words in poetry on kids shows she's > > > seeing on > > > > TV. She imitates words I make. Prompted is still a bit iffy but when > > > her ABA > > > > therapist asked her to sit the other day, Maia pulled out the chair and > > > said > > > > " sit " . She is imitating all kinds of words and sounds that people > > > around her > > > > are making. She is trying to sing songs. She went from completely > > > mute a year > > > > ago to imitation. She had some quasi word approximations 2 months ago, > > > but now > > > > it is turning into focus on what someone is saying and verbal > > > imitation. Lots > > > > and lots of chattering all day long. My chatty little Princess Maia! > > > She is > > > > attempting new words like saying " music " , " store " . > > > > > > > > 2. Her apraxia is lifting even more. She is able to blow bubbles from a > > > bubble > > > > wand now. She was not able to do this even two weeks ago. This is a > > > skill she > > > > has just acquired. > > > > > > > > > > > > 3. Her stools are consistently formed now. She had an infraction a few > > > days ago > > > > and ate some potato chips and got into some chocolate. Not pretty and > > > she had > > > > diarrhea for two days but once those things left the system, everything > > > was good > > > > again. > > > > > > > > 4. SO focussed in her ABA sessions. She did an entire 3 hour session > > > with only > > > > one 15 minute break in her last ABA session. > > > > > > > > > > > > 5. Can sit through circle time at preschool very consistently now. She > > > can sit > > > > through 35 minutes at a time now without getting up and getting > > > distracted. She > > > > participates in circle time. > > > > > > > > 6. She had an awkward wave before where when she was prompted to wave > > > " bye " to > > > > someone, the palm of her hand would be facing herself. She has just > > > learned to > > > > correct that in Week 7 of reduced oxalate/SCD. > > > > > > > > > > > > This is SO exciting for us. I never imagined that her apraxia could > > > lift like > > > > that. I wish I would've spent that last year doing SCD and low > > > oxalates. I'm > > > > so motivated to do this right now and I'm going to be so fastidious about > > > it. > > > > I'm so amazed at the really nice things I've been seeing in only 8 weeks > > > on this > > > > new diet. Really, really nice! > > > > > > > > I just picked up her DMG in liquid form right now to make sure it's > > > SCD. But > > > > I've also heard that many people with oxalate issues have problems with > > > DMG. > > > > But I was seeing her do some nice things in DMG before. I'm going to > > > > re-introduce it again slowly and see what happens. > > > > > > > > > > > > > > > > > > > > > -- > > Toni > > > > ------ > > Mind like a steel trap... > > Rusty and illegal in 37 states. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2011 Report Share Posted February 21, 2011 okay so my son just pooed his diaper and there were more clear crystal looking things in it. They aren't hard however more like a jello texture. I first noticed this a couple days ago and the only thing I have changed since Friday is the addition of Activated Charcoal.... So is the dumping a good sign, or a sign that he is consuming things he shouldn't? Can the charcoal help guide these out?? His DAN! doc mentioned the Oxalate Diet earlier this month..... > > > > > > > > Alberta!!!!!!!!!!!!!!!!!! > > > > Yay!!!!!!!!!!!!!!!!!!!!!! That is beyond awesome. I am doing the > > > happy dance > > > > for you, mama!! > > > > > > > > I want to say thank you because 15 minutes ago I was feeling so > > > frustrated and > > > > discouraged that I was ready to throw in the towel and drive my son to > > > pizza > > > > hut. Hearing this put me right back in check. > > > > > > > > > > > Way to go Maia!!!! > > > > > > > > -Tammy > > > > > > > > > > > > > > > > ________________________________ > > > > From: Alberta <gnomederwear@> > > > > > > > To: mb12 valtrex > > > > Sent: Sun, February 20, 2011 7:29:20 PM > > > > Subject: Re: Re: oxalates > > > > > > > >  > > > > I'm on Week 8 of SCD/medium-low oxalates right now. We started two days > > > after > > > > Christmas Day, when Maia was sick and had the flu and didn't eat for 2 > > > days -- I > > > > used that as an opportunity to start her on SCD and reduce oxalates. > > > > > > > > > > > > Each week, I'm seeing absolutely incredible gains I hadn't seen ever with > > > all > > > > the interventions we've done. I've stopped almost all of her > > > supplements right > > > > now except liquid MB12 and CLO. We are also doing some cell food and > > > > chlorophyll on the advice of our DAN. > > > > > > > > We saw a little bit of regression in Weeks 5 to 6 but she had a few weeks > > > of > > > > heavy oxalate dumping. I saw crystals in her stools and urine. A LOT > > > came out > > > > (I had no idea prior to starting this that she even had an oxalate issue > > > -- she > > > > just had chronic loose stools and I couldn't figure out why). > > > > > > > > > > > > Here are the new things I'm seeing in Week 8 that weren't there before: > > > > 1. Verbal imitation -- this is the holy grail I've been chasing for a > > > whole > > > > year. She is imitating certain words in poetry on kids shows she's > > > seeing on > > > > TV. She imitates words I make. Prompted is still a bit iffy but when > > > her ABA > > > > therapist asked her to sit the other day, Maia pulled out the chair and > > > said > > > > " sit " . She is imitating all kinds of words and sounds that people > > > around her > > > > are making. She is trying to sing songs. She went from completely > > > mute a year > > > > ago to imitation. She had some quasi word approximations 2 months ago, > > > but now > > > > it is turning into focus on what someone is saying and verbal > > > imitation. Lots > > > > and lots of chattering all day long. My chatty little Princess Maia! > > > She is > > > > attempting new words like saying " music " , " store " . > > > > > > > > 2. Her apraxia is lifting even more. She is able to blow bubbles from a > > > bubble > > > > wand now. She was not able to do this even two weeks ago. This is a > > > skill she > > > > has just acquired. > > > > > > > > > > > > 3. Her stools are consistently formed now. She had an infraction a few > > > days ago > > > > and ate some potato chips and got into some chocolate. Not pretty and > > > she had > > > > diarrhea for two days but once those things left the system, everything > > > was good > > > > again. > > > > > > > > 4. SO focussed in her ABA sessions. She did an entire 3 hour session > > > with only > > > > one 15 minute break in her last ABA session. > > > > > > > > > > > > 5. Can sit through circle time at preschool very consistently now. She > > > can sit > > > > through 35 minutes at a time now without getting up and getting > > > distracted. She > > > > participates in circle time. > > > > > > > > 6. She had an awkward wave before where when she was prompted to wave > > > " bye " to > > > > someone, the palm of her hand would be facing herself. She has just > > > learned to > > > > correct that in Week 7 of reduced oxalate/SCD. > > > > > > > > > > > > This is SO exciting for us. I never imagined that her apraxia could > > > lift like > > > > that. I wish I would've spent that last year doing SCD and low > > > oxalates. I'm > > > > so motivated to do this right now and I'm going to be so fastidious about > > > it. > > > > I'm so amazed at the really nice things I've been seeing in only 8 weeks > > > on this > > > > new diet. Really, really nice! > > > > > > > > I just picked up her DMG in liquid form right now to make sure it's > > > SCD. But > > > > I've also heard that many people with oxalate issues have problems with > > > DMG. > > > > But I was seeing her do some nice things in DMG before. I'm going to > > > > re-introduce it again slowly and see what happens. > > > > > > > > > > > > > > > > > > > > > -- > > Toni > > > > ------ > > Mind like a steel trap... > > Rusty and illegal in 37 states. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2011 Report Share Posted February 21, 2011 I was so happy/excited to read this, Alberta. We just started SCD/low ox a month ago... we are still going through some hard times with it, but to read about your daughter's gains is so exciting and makes me even more sure that we are doing the right thing. , so far snacks are hard for us as well. Not sure what to use for ABA reinforcers now too... if anyone has any ideas, all I can come up with is bubbles. And tickles. Songs. And iPad games. But Crosby is liking cucumbers and string beans for snacks, and I've been taking sliced Applegate farms hot dogs with us everywhere (with an ice pack). I'd love to hear what other suggestions people have for snacks/reinforcers. Also, question for Toni: I was reading that vitamin C and fish oil are high ox. What do you use in lieu of these? Both are used a lot with Crosby, and I need to know what to replace them with. Is the fermented fish oil low ox? Thanks! > > > > > > > > Alberta!!!!!!!!!!!!!!!!!! > > > > Yay!!!!!!!!!!!!!!!!!!!!!! That is beyond awesome. I am doing the > > > happy dance > > > > for you, mama!! > > > > > > > > I want to say thank you because 15 minutes ago I was feeling so > > > frustrated and > > > > discouraged that I was ready to throw in the towel and drive my son to > > > pizza > > > > hut. Hearing this put me right back in check. > > > > > > > > > > > Way to go Maia!!!! > > > > > > > > -Tammy > > > > > > > > > > > > > > > > ________________________________ > > > > From: Alberta <gnomederwear@> > > > > > > > To: mb12 valtrex > > > > Sent: Sun, February 20, 2011 7:29:20 PM > > > > Subject: Re: Re: oxalates > > > > > > > >  > > > > I'm on Week 8 of SCD/medium-low oxalates right now. We started two days > > > after > > > > Christmas Day, when Maia was sick and had the flu and didn't eat for 2 > > > days -- I > > > > used that as an opportunity to start her on SCD and reduce oxalates. > > > > > > > > > > > > Each week, I'm seeing absolutely incredible gains I hadn't seen ever with > > > all > > > > the interventions we've done. I've stopped almost all of her > > > supplements right > > > > now except liquid MB12 and CLO. We are also doing some cell food and > > > > chlorophyll on the advice of our DAN. > > > > > > > > We saw a little bit of regression in Weeks 5 to 6 but she had a few weeks > > > of > > > > heavy oxalate dumping. I saw crystals in her stools and urine. A LOT > > > came out > > > > (I had no idea prior to starting this that she even had an oxalate issue > > > -- she > > > > just had chronic loose stools and I couldn't figure out why). > > > > > > > > > > > > Here are the new things I'm seeing in Week 8 that weren't there before: > > > > 1. Verbal imitation -- this is the holy grail I've been chasing for a > > > whole > > > > year. She is imitating certain words in poetry on kids shows she's > > > seeing on > > > > TV. She imitates words I make. Prompted is still a bit iffy but when > > > her ABA > > > > therapist asked her to sit the other day, Maia pulled out the chair and > > > said > > > > " sit " . She is imitating all kinds of words and sounds that people > > > around her > > > > are making. She is trying to sing songs. She went from completely > > > mute a year > > > > ago to imitation. She had some quasi word approximations 2 months ago, > > > but now > > > > it is turning into focus on what someone is saying and verbal > > > imitation. Lots > > > > and lots of chattering all day long. My chatty little Princess Maia! > > > She is > > > > attempting new words like saying " music " , " store " . > > > > > > > > 2. Her apraxia is lifting even more. She is able to blow bubbles from a > > > bubble > > > > wand now. She was not able to do this even two weeks ago. This is a > > > skill she > > > > has just acquired. > > > > > > > > > > > > 3. Her stools are consistently formed now. She had an infraction a few > > > days ago > > > > and ate some potato chips and got into some chocolate. Not pretty and > > > she had > > > > diarrhea for two days but once those things left the system, everything > > > was good > > > > again. > > > > > > > > 4. SO focussed in her ABA sessions. She did an entire 3 hour session > > > with only > > > > one 15 minute break in her last ABA session. > > > > > > > > > > > > 5. Can sit through circle time at preschool very consistently now. She > > > can sit > > > > through 35 minutes at a time now without getting up and getting > > > distracted. She > > > > participates in circle time. > > > > > > > > 6. She had an awkward wave before where when she was prompted to wave > > > " bye " to > > > > someone, the palm of her hand would be facing herself. She has just > > > learned to > > > > correct that in Week 7 of reduced oxalate/SCD. > > > > > > > > > > > > This is SO exciting for us. I never imagined that her apraxia could > > > lift like > > > > that. I wish I would've spent that last year doing SCD and low > > > oxalates. I'm > > > > so motivated to do this right now and I'm going to be so fastidious about > > > it. > > > > I'm so amazed at the really nice things I've been seeing in only 8 weeks > > > on this > > > > new diet. Really, really nice! > > > > > > > > I just picked up her DMG in liquid form right now to make sure it's > > > SCD. But > > > > I've also heard that many people with oxalate issues have problems with > > > DMG. > > > > But I was seeing her do some nice things in DMG before. I'm going to > > > > re-introduce it again slowly and see what happens. > > > > > > > > > > > > > > > > > > > > > -- > > Toni > > > > ------ > > Mind like a steel trap... > > Rusty and illegal in 37 states. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2011 Report Share Posted February 21, 2011 I was so happy/excited to read this, Alberta. We just started SCD/low ox a month ago... we are still going through some hard times with it, but to read about your daughter's gains is so exciting and makes me even more sure that we are doing the right thing. , so far snacks are hard for us as well. Not sure what to use for ABA reinforcers now too... if anyone has any ideas, all I can come up with is bubbles. And tickles. Songs. And iPad games. But Crosby is liking cucumbers and string beans for snacks, and I've been taking sliced Applegate farms hot dogs with us everywhere (with an ice pack). I'd love to hear what other suggestions people have for snacks/reinforcers. Also, question for Toni: I was reading that vitamin C and fish oil are high ox. What do you use in lieu of these? Both are used a lot with Crosby, and I need to know what to replace them with. Is the fermented fish oil low ox? Thanks! > > > > > > > > Alberta!!!!!!!!!!!!!!!!!! > > > > Yay!!!!!!!!!!!!!!!!!!!!!! That is beyond awesome. I am doing the > > > happy dance > > > > for you, mama!! > > > > > > > > I want to say thank you because 15 minutes ago I was feeling so > > > frustrated and > > > > discouraged that I was ready to throw in the towel and drive my son to > > > pizza > > > > hut. Hearing this put me right back in check. > > > > > > > > > > > Way to go Maia!!!! > > > > > > > > -Tammy > > > > > > > > > > > > > > > > ________________________________ > > > > From: Alberta <gnomederwear@> > > > > > > > To: mb12 valtrex > > > > Sent: Sun, February 20, 2011 7:29:20 PM > > > > Subject: Re: Re: oxalates > > > > > > > >  > > > > I'm on Week 8 of SCD/medium-low oxalates right now. We started two days > > > after > > > > Christmas Day, when Maia was sick and had the flu and didn't eat for 2 > > > days -- I > > > > used that as an opportunity to start her on SCD and reduce oxalates. > > > > > > > > > > > > Each week, I'm seeing absolutely incredible gains I hadn't seen ever with > > > all > > > > the interventions we've done. I've stopped almost all of her > > > supplements right > > > > now except liquid MB12 and CLO. We are also doing some cell food and > > > > chlorophyll on the advice of our DAN. > > > > > > > > We saw a little bit of regression in Weeks 5 to 6 but she had a few weeks > > > of > > > > heavy oxalate dumping. I saw crystals in her stools and urine. A LOT > > > came out > > > > (I had no idea prior to starting this that she even had an oxalate issue > > > -- she > > > > just had chronic loose stools and I couldn't figure out why). > > > > > > > > > > > > Here are the new things I'm seeing in Week 8 that weren't there before: > > > > 1. Verbal imitation -- this is the holy grail I've been chasing for a > > > whole > > > > year. She is imitating certain words in poetry on kids shows she's > > > seeing on > > > > TV. She imitates words I make. Prompted is still a bit iffy but when > > > her ABA > > > > therapist asked her to sit the other day, Maia pulled out the chair and > > > said > > > > " sit " . She is imitating all kinds of words and sounds that people > > > around her > > > > are making. She is trying to sing songs. She went from completely > > > mute a year > > > > ago to imitation. She had some quasi word approximations 2 months ago, > > > but now > > > > it is turning into focus on what someone is saying and verbal > > > imitation. Lots > > > > and lots of chattering all day long. My chatty little Princess Maia! > > > She is > > > > attempting new words like saying " music " , " store " . > > > > > > > > 2. Her apraxia is lifting even more. She is able to blow bubbles from a > > > bubble > > > > wand now. She was not able to do this even two weeks ago. This is a > > > skill she > > > > has just acquired. > > > > > > > > > > > > 3. Her stools are consistently formed now. She had an infraction a few > > > days ago > > > > and ate some potato chips and got into some chocolate. Not pretty and > > > she had > > > > diarrhea for two days but once those things left the system, everything > > > was good > > > > again. > > > > > > > > 4. SO focussed in her ABA sessions. She did an entire 3 hour session > > > with only > > > > one 15 minute break in her last ABA session. > > > > > > > > > > > > 5. Can sit through circle time at preschool very consistently now. She > > > can sit > > > > through 35 minutes at a time now without getting up and getting > > > distracted. She > > > > participates in circle time. > > > > > > > > 6. She had an awkward wave before where when she was prompted to wave > > > " bye " to > > > > someone, the palm of her hand would be facing herself. She has just > > > learned to > > > > correct that in Week 7 of reduced oxalate/SCD. > > > > > > > > > > > > This is SO exciting for us. I never imagined that her apraxia could > > > lift like > > > > that. I wish I would've spent that last year doing SCD and low > > > oxalates. I'm > > > > so motivated to do this right now and I'm going to be so fastidious about > > > it. > > > > I'm so amazed at the really nice things I've been seeing in only 8 weeks > > > on this > > > > new diet. Really, really nice! > > > > > > > > I just picked up her DMG in liquid form right now to make sure it's > > > SCD. But > > > > I've also heard that many people with oxalate issues have problems with > > > DMG. > > > > But I was seeing her do some nice things in DMG before. I'm going to > > > > re-introduce it again slowly and see what happens. > > > > > > > > > > > > > > > > > > > > > -- > > Toni > > > > ------ > > Mind like a steel trap... > > Rusty and illegal in 37 states. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2011 Report Share Posted February 21, 2011 Okay I jest read on Dr. Greene's website that the crystals CAN be and are MOSTLY soft like JELLO, which is what I found in my son's diaper! I don't know what this means!!?? > > > > > > > > > > Alberta!!!!!!!!!!!!!!!!!! > > > > > Yay!!!!!!!!!!!!!!!!!!!!!! That is beyond awesome. I am doing the > > > > happy dance > > > > > for you, mama!! > > > > > > > > > > I want to say thank you because 15 minutes ago I was feeling so > > > > frustrated and > > > > > discouraged that I was ready to throw in the towel and drive my son to > > > > pizza > > > > > hut. Hearing this put me right back in check. > > > > > > > > > > > > > > Way to go Maia!!!! > > > > > > > > > > -Tammy > > > > > > > > > > > > > > > > > > > > ________________________________ > > > > > From: Alberta <gnomederwear@> > > > > > > > > > To: mb12 valtrex > > > > > Sent: Sun, February 20, 2011 7:29:20 PM > > > > > Subject: Re: Re: oxalates > > > > > > > > > >  > > > > > I'm on Week 8 of SCD/medium-low oxalates right now. We started two days > > > > after > > > > > Christmas Day, when Maia was sick and had the flu and didn't eat for 2 > > > > days -- I > > > > > used that as an opportunity to start her on SCD and reduce oxalates. > > > > > > > > > > > > > > > Each week, I'm seeing absolutely incredible gains I hadn't seen ever with > > > > all > > > > > the interventions we've done. I've stopped almost all of her > > > > supplements right > > > > > now except liquid MB12 and CLO. We are also doing some cell food and > > > > > chlorophyll on the advice of our DAN. > > > > > > > > > > We saw a little bit of regression in Weeks 5 to 6 but she had a few weeks > > > > of > > > > > heavy oxalate dumping. I saw crystals in her stools and urine. A LOT > > > > came out > > > > > (I had no idea prior to starting this that she even had an oxalate issue > > > > -- she > > > > > just had chronic loose stools and I couldn't figure out why). > > > > > > > > > > > > > > > Here are the new things I'm seeing in Week 8 that weren't there before: > > > > > 1. Verbal imitation -- this is the holy grail I've been chasing for a > > > > whole > > > > > year. She is imitating certain words in poetry on kids shows she's > > > > seeing on > > > > > TV. She imitates words I make. Prompted is still a bit iffy but when > > > > her ABA > > > > > therapist asked her to sit the other day, Maia pulled out the chair and > > > > said > > > > > " sit " . She is imitating all kinds of words and sounds that people > > > > around her > > > > > are making. She is trying to sing songs. She went from completely > > > > mute a year > > > > > ago to imitation. She had some quasi word approximations 2 months ago, > > > > but now > > > > > it is turning into focus on what someone is saying and verbal > > > > imitation. Lots > > > > > and lots of chattering all day long. My chatty little Princess Maia! > > > > She is > > > > > attempting new words like saying " music " , " store " . > > > > > > > > > > 2. Her apraxia is lifting even more. She is able to blow bubbles from a > > > > bubble > > > > > wand now. She was not able to do this even two weeks ago. This is a > > > > skill she > > > > > has just acquired. > > > > > > > > > > > > > > > 3. Her stools are consistently formed now. She had an infraction a few > > > > days ago > > > > > and ate some potato chips and got into some chocolate. Not pretty and > > > > she had > > > > > diarrhea for two days but once those things left the system, everything > > > > was good > > > > > again. > > > > > > > > > > 4. SO focussed in her ABA sessions. She did an entire 3 hour session > > > > with only > > > > > one 15 minute break in her last ABA session. > > > > > > > > > > > > > > > 5. Can sit through circle time at preschool very consistently now. She > > > > can sit > > > > > through 35 minutes at a time now without getting up and getting > > > > distracted. She > > > > > participates in circle time. > > > > > > > > > > 6. She had an awkward wave before where when she was prompted to wave > > > > " bye " to > > > > > someone, the palm of her hand would be facing herself. She has just > > > > learned to > > > > > correct that in Week 7 of reduced oxalate/SCD. > > > > > > > > > > > > > > > This is SO exciting for us. I never imagined that her apraxia could > > > > lift like > > > > > that. I wish I would've spent that last year doing SCD and low > > > > oxalates. I'm > > > > > so motivated to do this right now and I'm going to be so fastidious about > > > > it. > > > > > I'm so amazed at the really nice things I've been seeing in only 8 weeks > > > > on this > > > > > new diet. Really, really nice! > > > > > > > > > > I just picked up her DMG in liquid form right now to make sure it's > > > > SCD. But > > > > > I've also heard that many people with oxalate issues have problems with > > > > DMG. > > > > > But I was seeing her do some nice things in DMG before. I'm going to > > > > > re-introduce it again slowly and see what happens. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > -- > > > Toni > > > > > > ------ > > > Mind like a steel trap... > > > Rusty and illegal in 37 states. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2011 Report Share Posted February 21, 2011 Okay I jest read on Dr. Greene's website that the crystals CAN be and are MOSTLY soft like JELLO, which is what I found in my son's diaper! I don't know what this means!!?? > > > > > > > > > > Alberta!!!!!!!!!!!!!!!!!! > > > > > Yay!!!!!!!!!!!!!!!!!!!!!! That is beyond awesome. I am doing the > > > > happy dance > > > > > for you, mama!! > > > > > > > > > > I want to say thank you because 15 minutes ago I was feeling so > > > > frustrated and > > > > > discouraged that I was ready to throw in the towel and drive my son to > > > > pizza > > > > > hut. Hearing this put me right back in check. > > > > > > > > > > > > > > Way to go Maia!!!! > > > > > > > > > > -Tammy > > > > > > > > > > > > > > > > > > > > ________________________________ > > > > > From: Alberta <gnomederwear@> > > > > > > > > > To: mb12 valtrex > > > > > Sent: Sun, February 20, 2011 7:29:20 PM > > > > > Subject: Re: Re: oxalates > > > > > > > > > >  > > > > > I'm on Week 8 of SCD/medium-low oxalates right now. We started two days > > > > after > > > > > Christmas Day, when Maia was sick and had the flu and didn't eat for 2 > > > > days -- I > > > > > used that as an opportunity to start her on SCD and reduce oxalates. > > > > > > > > > > > > > > > Each week, I'm seeing absolutely incredible gains I hadn't seen ever with > > > > all > > > > > the interventions we've done. I've stopped almost all of her > > > > supplements right > > > > > now except liquid MB12 and CLO. We are also doing some cell food and > > > > > chlorophyll on the advice of our DAN. > > > > > > > > > > We saw a little bit of regression in Weeks 5 to 6 but she had a few weeks > > > > of > > > > > heavy oxalate dumping. I saw crystals in her stools and urine. A LOT > > > > came out > > > > > (I had no idea prior to starting this that she even had an oxalate issue > > > > -- she > > > > > just had chronic loose stools and I couldn't figure out why). > > > > > > > > > > > > > > > Here are the new things I'm seeing in Week 8 that weren't there before: > > > > > 1. Verbal imitation -- this is the holy grail I've been chasing for a > > > > whole > > > > > year. She is imitating certain words in poetry on kids shows she's > > > > seeing on > > > > > TV. She imitates words I make. Prompted is still a bit iffy but when > > > > her ABA > > > > > therapist asked her to sit the other day, Maia pulled out the chair and > > > > said > > > > > " sit " . She is imitating all kinds of words and sounds that people > > > > around her > > > > > are making. She is trying to sing songs. She went from completely > > > > mute a year > > > > > ago to imitation. She had some quasi word approximations 2 months ago, > > > > but now > > > > > it is turning into focus on what someone is saying and verbal > > > > imitation. Lots > > > > > and lots of chattering all day long. My chatty little Princess Maia! > > > > She is > > > > > attempting new words like saying " music " , " store " . > > > > > > > > > > 2. Her apraxia is lifting even more. She is able to blow bubbles from a > > > > bubble > > > > > wand now. She was not able to do this even two weeks ago. This is a > > > > skill she > > > > > has just acquired. > > > > > > > > > > > > > > > 3. Her stools are consistently formed now. She had an infraction a few > > > > days ago > > > > > and ate some potato chips and got into some chocolate. Not pretty and > > > > she had > > > > > diarrhea for two days but once those things left the system, everything > > > > was good > > > > > again. > > > > > > > > > > 4. SO focussed in her ABA sessions. She did an entire 3 hour session > > > > with only > > > > > one 15 minute break in her last ABA session. > > > > > > > > > > > > > > > 5. Can sit through circle time at preschool very consistently now. She > > > > can sit > > > > > through 35 minutes at a time now without getting up and getting > > > > distracted. She > > > > > participates in circle time. > > > > > > > > > > 6. She had an awkward wave before where when she was prompted to wave > > > > " bye " to > > > > > someone, the palm of her hand would be facing herself. She has just > > > > learned to > > > > > correct that in Week 7 of reduced oxalate/SCD. > > > > > > > > > > > > > > > This is SO exciting for us. I never imagined that her apraxia could > > > > lift like > > > > > that. I wish I would've spent that last year doing SCD and low > > > > oxalates. I'm > > > > > so motivated to do this right now and I'm going to be so fastidious about > > > > it. > > > > > I'm so amazed at the really nice things I've been seeing in only 8 weeks > > > > on this > > > > > new diet. Really, really nice! > > > > > > > > > > I just picked up her DMG in liquid form right now to make sure it's > > > > SCD. But > > > > > I've also heard that many people with oxalate issues have problems with > > > > DMG. > > > > > But I was seeing her do some nice things in DMG before. I'm going to > > > > > re-introduce it again slowly and see what happens. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > -- > > > Toni > > > > > > ------ > > > Mind like a steel trap... > > > Rusty and illegal in 37 states. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2011 Report Share Posted February 21, 2011 Hi, (is it Seroj?), Most oxalate scientists would tell you that the B6 could not possibly help you on the ascorbic acid side, but I don't necessarily agree with them, but to tell you why it might sometimes help, it will take some explaining. When vitamin C acts as an antioxidant, ascorbic acid is quickly converted to dihydroascorbic acid. After that, over time, a large portion of the dihydroascorbic acid will be converted into oxalate...somewhere between 22-67% of the dose over about two weeks...not so much right away but more while you are still at the doctor's office compared to later. You would see an immediate benefit from the vitamin C reducing oxidative stress in the short term, but in the long run the oxalate it produces becomes a serious PRO-oxidant. So taking vitamin C backfires in time...long after you would think of associating new symptoms of oxidative stress to the dose of ascorbic acid. This is why taking OTHER antioxidants to reduce oxidative stress makes so much more sense, like taking alpha lipoic acid or NAC or glutathione or vitamin E. The conversion of vitamin C to oxalate happens without enzymatic help, so this conversion doesn't relate to B6 chemistry at all. The RATE of conversion to oxalate seems to have more to do with how seriously someone is in oxidative stress when you give them the vitamin C. Of course, most doctors advise people to take vitamin C BECAUSE they think a patient needs it BECAUSE he is in oxidative stress and they think it will be a solution. That is probably true only in the first few minutes, but after that, everything changes! But what about B6? The Gamelins are a husband and wife team who were investigating WHAT CAUSED the neurotoxicity from a cancer drug called oxaliplatin. This drug releases oxalate into the system in its job of delivering platinum to cancer cells. The wife, who is a Ph.D. toxicologist, found that the oxalate released got into neurons and changed the operation of sodium channels and this was because oxalate as a free ion crossed into the inside of neurons, and once there, this free oxalate tied up intracellular calcium....Oxalate does this very well! So what would that do to the neuron? It would tangle with all the cell signalling that is regulated with calcium which is MAJOR. But that is not all. Oxalate is also attracted to and can also tie up other positively charge ions like magnesium, zinc, copper, manganese, iron, etc, and even mercury, aluminum and lead! Each ion is a bit different in how it is handled once bound to oxalate and where that complex is found. Anyway, the Gamelins wondered if " oxalate " genetics could tell them why some patients developed worse neurotoxicity from the IV oxalate compared to others. They looked for polymorphisms on the two main genes that cause genetic hyperoxaluria. The significant polymorphism that associated to neurotoxicity in their patients was in the B6 dependent enzyme AGT. In a one-direction reaction, AGT converts glyoxylate into brand new oxalate. Nobody had told the Gamelins that scientists couldn't find a different enzyme in humans that could convert oxalate to glyoxylate to make AGT relevant, so it was natural to ask: how could this polymorphism do anything that would help with oxalate that came into the body in the blood? The only way the Gamelin's data made sense was if there was an enzyme that would convert the IV oxalate into intracellular glyoxylate. Clearly, polymorphisms that made the AGT enzyme more dependent on B6 described the genetics of the cancer patients who experienced the most serious neurotoxicity from IV oxalate! What a coup! They also found that the best way to reduce the toxicity from the IV was to give their patients calcium and magnesium in the IV with the cancer drug because that would keep less oxalate from entering neurons. So, essentially, Seroj, if you are still with me, if B6 helps with ascorbic acid's conversion to oxalate, it is only if there is an uncharacterized way that oxalate formed from vitamin C would be converted into glyoxylate, allowing the glyoxylate formed that way to be converted into harmless glycine using the B6 dependent step of the enzyme AGT. The Gamelin's studies (and much other data) also counter Tamaro's theory that reducing calcium would or could offer an advantage against the neurotoxicity of oxalate. The literature is so clear time and again. Calcium and magnesium protect against the toxicity of oxalate. A treatment that ties up calcium, like giving high dose vitamin K trying to drive higher levels of vitamin K dependent enzymes, would clearly make things in the nervous system worse. But B6 has nothing to do with the conversion of vitamin C to oxalate. That reaction can take place in the test tube on the way to the laboratory without any enzymatic help that would require B6. Did that make sense? > > B6 is very good to combat oxalate specially from vitamin c Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2011 Report Share Posted February 21, 2011 Hi, (is it Seroj?), Most oxalate scientists would tell you that the B6 could not possibly help you on the ascorbic acid side, but I don't necessarily agree with them, but to tell you why it might sometimes help, it will take some explaining. When vitamin C acts as an antioxidant, ascorbic acid is quickly converted to dihydroascorbic acid. After that, over time, a large portion of the dihydroascorbic acid will be converted into oxalate...somewhere between 22-67% of the dose over about two weeks...not so much right away but more while you are still at the doctor's office compared to later. You would see an immediate benefit from the vitamin C reducing oxidative stress in the short term, but in the long run the oxalate it produces becomes a serious PRO-oxidant. So taking vitamin C backfires in time...long after you would think of associating new symptoms of oxidative stress to the dose of ascorbic acid. This is why taking OTHER antioxidants to reduce oxidative stress makes so much more sense, like taking alpha lipoic acid or NAC or glutathione or vitamin E. The conversion of vitamin C to oxalate happens without enzymatic help, so this conversion doesn't relate to B6 chemistry at all. The RATE of conversion to oxalate seems to have more to do with how seriously someone is in oxidative stress when you give them the vitamin C. Of course, most doctors advise people to take vitamin C BECAUSE they think a patient needs it BECAUSE he is in oxidative stress and they think it will be a solution. That is probably true only in the first few minutes, but after that, everything changes! But what about B6? The Gamelins are a husband and wife team who were investigating WHAT CAUSED the neurotoxicity from a cancer drug called oxaliplatin. This drug releases oxalate into the system in its job of delivering platinum to cancer cells. The wife, who is a Ph.D. toxicologist, found that the oxalate released got into neurons and changed the operation of sodium channels and this was because oxalate as a free ion crossed into the inside of neurons, and once there, this free oxalate tied up intracellular calcium....Oxalate does this very well! So what would that do to the neuron? It would tangle with all the cell signalling that is regulated with calcium which is MAJOR. But that is not all. Oxalate is also attracted to and can also tie up other positively charge ions like magnesium, zinc, copper, manganese, iron, etc, and even mercury, aluminum and lead! Each ion is a bit different in how it is handled once bound to oxalate and where that complex is found. Anyway, the Gamelins wondered if " oxalate " genetics could tell them why some patients developed worse neurotoxicity from the IV oxalate compared to others. They looked for polymorphisms on the two main genes that cause genetic hyperoxaluria. The significant polymorphism that associated to neurotoxicity in their patients was in the B6 dependent enzyme AGT. In a one-direction reaction, AGT converts glyoxylate into brand new oxalate. Nobody had told the Gamelins that scientists couldn't find a different enzyme in humans that could convert oxalate to glyoxylate to make AGT relevant, so it was natural to ask: how could this polymorphism do anything that would help with oxalate that came into the body in the blood? The only way the Gamelin's data made sense was if there was an enzyme that would convert the IV oxalate into intracellular glyoxylate. Clearly, polymorphisms that made the AGT enzyme more dependent on B6 described the genetics of the cancer patients who experienced the most serious neurotoxicity from IV oxalate! What a coup! They also found that the best way to reduce the toxicity from the IV was to give their patients calcium and magnesium in the IV with the cancer drug because that would keep less oxalate from entering neurons. So, essentially, Seroj, if you are still with me, if B6 helps with ascorbic acid's conversion to oxalate, it is only if there is an uncharacterized way that oxalate formed from vitamin C would be converted into glyoxylate, allowing the glyoxylate formed that way to be converted into harmless glycine using the B6 dependent step of the enzyme AGT. The Gamelin's studies (and much other data) also counter Tamaro's theory that reducing calcium would or could offer an advantage against the neurotoxicity of oxalate. The literature is so clear time and again. Calcium and magnesium protect against the toxicity of oxalate. A treatment that ties up calcium, like giving high dose vitamin K trying to drive higher levels of vitamin K dependent enzymes, would clearly make things in the nervous system worse. But B6 has nothing to do with the conversion of vitamin C to oxalate. That reaction can take place in the test tube on the way to the laboratory without any enzymatic help that would require B6. Did that make sense? > > B6 is very good to combat oxalate specially from vitamin c Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2011 Report Share Posted February 21, 2011 Hi, (is it Seroj?), Most oxalate scientists would tell you that the B6 could not possibly help you on the ascorbic acid side, but I don't necessarily agree with them, but to tell you why it might sometimes help, it will take some explaining. When vitamin C acts as an antioxidant, ascorbic acid is quickly converted to dihydroascorbic acid. After that, over time, a large portion of the dihydroascorbic acid will be converted into oxalate...somewhere between 22-67% of the dose over about two weeks...not so much right away but more while you are still at the doctor's office compared to later. You would see an immediate benefit from the vitamin C reducing oxidative stress in the short term, but in the long run the oxalate it produces becomes a serious PRO-oxidant. So taking vitamin C backfires in time...long after you would think of associating new symptoms of oxidative stress to the dose of ascorbic acid. This is why taking OTHER antioxidants to reduce oxidative stress makes so much more sense, like taking alpha lipoic acid or NAC or glutathione or vitamin E. The conversion of vitamin C to oxalate happens without enzymatic help, so this conversion doesn't relate to B6 chemistry at all. The RATE of conversion to oxalate seems to have more to do with how seriously someone is in oxidative stress when you give them the vitamin C. Of course, most doctors advise people to take vitamin C BECAUSE they think a patient needs it BECAUSE he is in oxidative stress and they think it will be a solution. That is probably true only in the first few minutes, but after that, everything changes! But what about B6? The Gamelins are a husband and wife team who were investigating WHAT CAUSED the neurotoxicity from a cancer drug called oxaliplatin. This drug releases oxalate into the system in its job of delivering platinum to cancer cells. The wife, who is a Ph.D. toxicologist, found that the oxalate released got into neurons and changed the operation of sodium channels and this was because oxalate as a free ion crossed into the inside of neurons, and once there, this free oxalate tied up intracellular calcium....Oxalate does this very well! So what would that do to the neuron? It would tangle with all the cell signalling that is regulated with calcium which is MAJOR. But that is not all. Oxalate is also attracted to and can also tie up other positively charge ions like magnesium, zinc, copper, manganese, iron, etc, and even mercury, aluminum and lead! Each ion is a bit different in how it is handled once bound to oxalate and where that complex is found. Anyway, the Gamelins wondered if " oxalate " genetics could tell them why some patients developed worse neurotoxicity from the IV oxalate compared to others. They looked for polymorphisms on the two main genes that cause genetic hyperoxaluria. The significant polymorphism that associated to neurotoxicity in their patients was in the B6 dependent enzyme AGT. In a one-direction reaction, AGT converts glyoxylate into brand new oxalate. Nobody had told the Gamelins that scientists couldn't find a different enzyme in humans that could convert oxalate to glyoxylate to make AGT relevant, so it was natural to ask: how could this polymorphism do anything that would help with oxalate that came into the body in the blood? The only way the Gamelin's data made sense was if there was an enzyme that would convert the IV oxalate into intracellular glyoxylate. Clearly, polymorphisms that made the AGT enzyme more dependent on B6 described the genetics of the cancer patients who experienced the most serious neurotoxicity from IV oxalate! What a coup! They also found that the best way to reduce the toxicity from the IV was to give their patients calcium and magnesium in the IV with the cancer drug because that would keep less oxalate from entering neurons. So, essentially, Seroj, if you are still with me, if B6 helps with ascorbic acid's conversion to oxalate, it is only if there is an uncharacterized way that oxalate formed from vitamin C would be converted into glyoxylate, allowing the glyoxylate formed that way to be converted into harmless glycine using the B6 dependent step of the enzyme AGT. The Gamelin's studies (and much other data) also counter Tamaro's theory that reducing calcium would or could offer an advantage against the neurotoxicity of oxalate. The literature is so clear time and again. Calcium and magnesium protect against the toxicity of oxalate. A treatment that ties up calcium, like giving high dose vitamin K trying to drive higher levels of vitamin K dependent enzymes, would clearly make things in the nervous system worse. But B6 has nothing to do with the conversion of vitamin C to oxalate. That reaction can take place in the test tube on the way to the laboratory without any enzymatic help that would require B6. Did that make sense? > > B6 is very good to combat oxalate specially from vitamin c Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2011 Report Share Posted February 25, 2011 Tammy, this frustrates me too. However, that being said, what I did do, is that I limit it. I don't kiss it goodbye (except on Feingold - Jimmy was a whiny mess with those foods like grapes, OJ, tomatoes, cucumbers) -- and with potatoes, because my guy loves French fries (I mean, who doesn't?) - I give him calcium citrate 20 min prior. I also give him some high ox drinks (for nutrition reasons).and again, 20 min prior, calcium citrate. This has helped quite a bit. However, Rob is AWFUL on oxalates but seems to tolerate the other stuff, which he is allowed to have outside the house (like when he goes to program)... laura > > Toni and , > > So I've decided to just do one shwoop and watch the oxalates, phenols and > salicylates since we're pretty much starting from scratch anyhow. I've > noticed with many of the fruits and vegetables that I'd have the best chance of > getting into the boys tend to be low ox/but higher in salicylates. How do we > work this? sort of like weight watcher's points? Also, I noticed potatoes were > high ox. Do you know if that includes yucca too? My little guy's favorite is > mashed potates.... and it's to sneak in cauliflower and a little avocado. Bad > enough the peanut butter's gotta go and the tomato sauce has gotta go, but the > potatoes? What a bummer. It seems like there's not a single food out there > that isn't bad for you one way or another. > > > -Tammy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2011 Report Share Posted February 25, 2011 Tammy, this frustrates me too. However, that being said, what I did do, is that I limit it. I don't kiss it goodbye (except on Feingold - Jimmy was a whiny mess with those foods like grapes, OJ, tomatoes, cucumbers) -- and with potatoes, because my guy loves French fries (I mean, who doesn't?) - I give him calcium citrate 20 min prior. I also give him some high ox drinks (for nutrition reasons).and again, 20 min prior, calcium citrate. This has helped quite a bit. However, Rob is AWFUL on oxalates but seems to tolerate the other stuff, which he is allowed to have outside the house (like when he goes to program)... laura > > Toni and , > > So I've decided to just do one shwoop and watch the oxalates, phenols and > salicylates since we're pretty much starting from scratch anyhow. I've > noticed with many of the fruits and vegetables that I'd have the best chance of > getting into the boys tend to be low ox/but higher in salicylates. How do we > work this? sort of like weight watcher's points? Also, I noticed potatoes were > high ox. Do you know if that includes yucca too? My little guy's favorite is > mashed potates.... and it's to sneak in cauliflower and a little avocado. Bad > enough the peanut butter's gotta go and the tomato sauce has gotta go, but the > potatoes? What a bummer. It seems like there's not a single food out there > that isn't bad for you one way or another. > > > -Tammy > Quote Link to comment Share on other sites More sharing options...
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