Guest guest Posted September 15, 2000 Report Share Posted September 15, 2000 There is a child on the Vagus Nerve stimulator here at the center, ( by the way it can go under pressure) he has had it for two years and has had no improvement. However now that the HBOT has been added, the child is out of diapers, is starting to talk, Smiles and SZ 's have lessen greatly. The child was slowly taken off the Keto diet, f all SZ meds. the dramatic improvement can only be the introduction of HBOT. and agrees the relatives and MDS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2000 Report Share Posted September 15, 2000 what to see a baby in the chamber? go to www.babiesonline.com, type in the name Felder Re: [ ] SEIZURES > >Generic Name: Vagus nerve stimulator >Trade Name: NeuroCybernetic Prosthesis System >Use: Reduction of seizures in people who remain refractory despite optimal >drug therapy >On January 27, 1997, the U.S. Food and Drug Administration (FDA) received an >application for marketing of a device that would help reduce seizures in >people who remain refractory despite the utilization of optimal drug therapy. >This device is called the NeuroCybernetic Prosthesis System and is >manufactured by Cyberonics, a company based in Houston. The process of >approval was expedited by the favorable recommendation of the Neurological >Devices Panel of FDA's Medical Devices Advisory Committee. This device was >approved as an adjunct to drug or surgery in patients with partial-onset >seizures. > >How It Works >Vagus nerve stimulation was first tried in 1988 as a treatment for seizures. >This idea was proposed by Zabarra, who believed that stimulation of the >vagus nerve might disrupt or prevent a seizure. Through animal studies, he >was able to show that brain wave patterns can be changed via vagus nerve >stimulation. This proposed theory serves as the backbone for the modern-day >vagus nerve stimulator (VNS). > >The NeuroCybernetic Prosthesis System is a vagus nerve stimulator . A >generator is implanted under the collarbone, much like a pacemaker. This >generator is then connected to the vagus nerve in the neck. At this site, the >generator regularly releases electrical signals 24 hours a day, regardless of >seizure activity. These signals are relayed to the brain and are responsible >for maintaining control of any seizure activity. This device includes an >external programming system, which is used by physicians to control >stimulation settings. Patients can also turn this device on or off by placing >a magnet directly over it. > >The exact mechanism of action of this device is not fully understood. >However, there are two hypotheses. The first theory states that the >anticonvulsant activity of the VNS is caused by an increased threshold of the >connections to the nucleus. The second theory states that the continuous >electrical stimulation of the vagus nerve increases the number of inhibitory >neurotransmitters and decreases the number of stimulatory neurotransmitters. > >Clinical Tips >In one study, the safety and effectiveness of this device were tested. The >majority of patients showed some improvement while using the VNS. Fifty >percent of those enrolled in this study showed at least a 20% reduction in >the number of seizures per day, and 25% of patients reported a 50% reduction >in the frequency of seizures. In contrast, 20% of patients demonstrated >increased seizure activity. Treatment with the vagus nerve stimulator was not >free of side effects. Patients experienced cough, hoarseness, alterations in >their voice, and shortness of breath. > >Another study tested the safety and tolerability of this device by monitoring >patients for changes in vital signs and electrocardiographic activity, and >for the occurrence of adverse events. The authors concluded that the lack of >change in both vital signs and electrocardiographic activity dictates that >this device can be safely implanted for use as an anticonvulsant. > >Approximately 1.7 million Americans suffer from epilepsy. The vast majority >of these patients can be controlled by conventional drug therapy. However, >more than 200,000 people remain refractory to pharmacologic intervention. >This device may serve an essential function in their lives. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2000 Report Share Posted September 16, 2000 Generic Name: Vagus nerve stimulator Trade Name: NeuroCybernetic Prosthesis System Use: Reduction of seizures in people who remain refractory despite optimal drug therapy On January 27, 1997, the U.S. Food and Drug Administration (FDA) received an application for marketing of a device that would help reduce seizures in people who remain refractory despite the utilization of optimal drug therapy. This device is called the NeuroCybernetic Prosthesis System and is manufactured by Cyberonics, a company based in Houston. The process of approval was expedited by the favorable recommendation of the Neurological Devices Panel of FDA's Medical Devices Advisory Committee. This device was approved as an adjunct to drug or surgery in patients with partial-onset seizures. How It Works Vagus nerve stimulation was first tried in 1988 as a treatment for seizures. This idea was proposed by Zabarra, who believed that stimulation of the vagus nerve might disrupt or prevent a seizure. Through animal studies, he was able to show that brain wave patterns can be changed via vagus nerve stimulation. This proposed theory serves as the backbone for the modern-day vagus nerve stimulator (VNS). The NeuroCybernetic Prosthesis System is a vagus nerve stimulator . A generator is implanted under the collarbone, much like a pacemaker. This generator is then connected to the vagus nerve in the neck. At this site, the generator regularly releases electrical signals 24 hours a day, regardless of seizure activity. These signals are relayed to the brain and are responsible for maintaining control of any seizure activity. This device includes an external programming system, which is used by physicians to control stimulation settings. Patients can also turn this device on or off by placing a magnet directly over it. The exact mechanism of action of this device is not fully understood. However, there are two hypotheses. The first theory states that the anticonvulsant activity of the VNS is caused by an increased threshold of the connections to the nucleus. The second theory states that the continuous electrical stimulation of the vagus nerve increases the number of inhibitory neurotransmitters and decreases the number of stimulatory neurotransmitters. Clinical Tips In one study, the safety and effectiveness of this device were tested. The majority of patients showed some improvement while using the VNS. Fifty percent of those enrolled in this study showed at least a 20% reduction in the number of seizures per day, and 25% of patients reported a 50% reduction in the frequency of seizures. In contrast, 20% of patients demonstrated increased seizure activity. Treatment with the vagus nerve stimulator was not free of side effects. Patients experienced cough, hoarseness, alterations in their voice, and shortness of breath. Another study tested the safety and tolerability of this device by monitoring patients for changes in vital signs and electrocardiographic activity, and for the occurrence of adverse events. The authors concluded that the lack of change in both vital signs and electrocardiographic activity dictates that this device can be safely implanted for use as an anticonvulsant. Approximately 1.7 million Americans suffer from epilepsy. The vast majority of these patients can be controlled by conventional drug therapy. However, more than 200,000 people remain refractory to pharmacologic intervention. This device may serve an essential function in their lives. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2001 Report Share Posted March 12, 2001 If a child has seizure disorder along with it they will continually have set backs. Lynette Lots of studies and clinical experience discussed at the Pfeiffer and Vitamin Research News sites say epilepsy and seizures are caused mostly by mineral deficiencies and can be controlled by proper supplementation. I've posted info on this from those sites before. They cite a lot of clinical cases treated sucessfully. Bernie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2001 Report Share Posted December 11, 2001 HELLO,thanks to everyone who responded to seizures/pro efa.I was just confused because i hear different stories about the omega 6(borage/primrose oil) that they can sometimes trigger seizures.Although he was pretty sick when he had the seizures,i just want to be sure because that was the awefullest thing i had ever witnessed in my life and never want to see it again(seizures).I guess if his condition was considered a seizure disorder,i would really be sceptical,but i would think he would of had more by now(its been 1 1/2 yrs ago).he is currently on coromega for about 3 weeks now,so we will give it more time.In the mean time,if there is anymore info anyone can share on this subject,please do.I just want to do what is right for my little boy. thanks again,brian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2001 Report Share Posted December 11, 2001 , I would still check with your doctor. Every child is different and your doctor will give you better insight to your child's issues. Just my opinion. denise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2001 Report Share Posted December 11, 2001 -- my son did start having seizures several times a week after starting the ProEFA. He had not previously had seizures that we know about. They were not febrile seizures -- he was not sick and did not have a fever. We switched to an Omega-3-only product (without the Omega 6) and have had good results, although probably not as amazing as what you read here about ProEFA. I have read warnings about the negative effect of evening primrose oil in children who are already seizure prone. I believe Efalex has evening primrose oil. ProEFA does not have evening primrose oil -- it uses borage oil instead as the source of Omega 6. There is no research on the effects of borage oil on seizure prone children. However, in our case, the seizures stopped when we switched. We have used Coromega, and also some other Nordic Naturals products -- ProEPA and PRoDHA. One advantage is that they taste better than the ProEFA and he takes them more willingly -- the Coromega is a strong orange flavor and the ProDHA is a strawberry flavor. ============================================================================ This message contains information which may be confidential and privileged. Unless you are the addressee (or authorized to receive for the addressee), you may not use, copy or disclose to anyone the message or any information contained in the message. If you have received the message in error, please advise the sender by reply e-mail @mofo.com, and delete the message. Thank you very much. ============================================================================ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2001 Report Share Posted December 13, 2001 I WOULD BE CURIOUS WHAT YOUR CHILD'S NEUOR.HAS TO SAY ABOUT EFA'S.KEEP ME POSTED.MINE DOESNT BELIEVE IN THEM BRIAN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2001 Report Share Posted December 13, 2001 NEITHER DOES WILL'S BUT THE ONLY THING HE DID SAY THAT IF I WAS GOING TO USE THEM, THEN USE OMEGA 3. TAKE CARE LORI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2002 Report Share Posted February 11, 2002 I wanted to add, I think my son may have had a seizure a couple of weeks ago when he managed to get his hands on a 3mg Melatonin pill. I wasn't there, but his sitter said he just shivered for over 2 minutes. He hasn't had one since, though. I hope your little guy gets diagnosed and feels better soon! Jill Ramos, Las Vegas, NV Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2002 Report Share Posted February 11, 2002 Jill, Holy cow!! How scary!! Hope he is OK now! Marci Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2002 Report Share Posted February 12, 2002 OMG! Jill! Is he ok? I hope so! I am sorry that happened. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2002 Report Share Posted September 4, 2002 These could be seizure but what came to mind to me when you described this is the horrible periods of narcoleptic-type of sleepiness I'd suddenly get throughout the day when I was really ill several years ago. Allergies to certain foods would make it occur more often. Perhaps keeping a log of what he eats and is exposed to when he has these may give you another angle to look at? If it's allergy for me, it occurs 1-2 hours after eating. Gaylen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2002 Report Share Posted September 4, 2002 I am by no means a dr, but the ER dr described the temporal lobe seizures as " absent, " , being out of it and sweaty. What happened with my daughter was that all of a sudden she was looking up at the sky and to the right. she collapsed, could not walk, would not respond to her name. Sweat beads formed above her top lip and I maybe a little twitching, but I'm not for sure. The worst thing was that her eyes were frozen in that upward position and she would not respond to her name. then she fell asleep. She seems to be back to normal, but is going to bed earlier, drowsy from the dilantin anticonvulsant they gave her at the hospital. I was scared of regression, but the ER doctor said there would be no intellectual regression involved. courtney seizures > I would really like to know what these seizures some of you have seen look like. My son has had 3 episodes since May (two after increasing Zoloft and 1 before even starting Zoloft, on paxil). We are trying to decide if they were seizures or drop in blood sugar. A finger prick showed no hypoglycemia, although he could still have a sudden drop in blood sugar. Our doc at home and Dr. G both suggested an eeg but I don't know how reliable those are if an episode doesn't happen during the eeg ( even a 24 hour eeg). > > The episodes look like he is suddenly falling asleep but when I touch him he is all sweaty and clammy. One time he came to right away, another happened in the car with my husband, and another I was splashing water on his face and he didn't respond, but then when my husband called his name he looked at him and he was then able to sing his abc's even though he was still really out of it- he went right to sleep for the night. > > Any thoughts? > > -Noelle > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2002 Report Share Posted September 4, 2002 Just remember that tests indicate the range for average people, not necessarily the range your child needs. mjh In a message dated 9/4/02 10:01:30 AM Eastern Daylight Time, dmccreary@... writes: > You mentioned low blood sugar, that's interesting because we have noticed > that since being on the protocol his appetite has increased (it was always > good), but sometimes now when he doesn't get to eat right on time he gets > really cranky, and he never used to. We felt that maybe it was low blood > sugar, but tests have never indicated that. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2002 Report Share Posted September 4, 2002 In a message dated 9/4/02 9:01:15 AM Central Daylight Time, dmccreary@... writes: > You mentioned low blood sugar, that's interesting because we have noticed > that since being on the protocol his appetite has increased (it was always > good), but sometimes now when he doesn't get to eat right on time he gets > really cranky, and he never used to That happened to me as I began to heal. There was a period where I'd have to eat at least a little every 2-3 hours or feel really off. Testing never showed hypoglycemia or diabetes but I'd really noticed a difference if I waited too long before eating. That lasted about a year and then, as I was healthier, I could space out snacks more and now have no problem with it. I think that once you start stirring things up, you body goes a little out of balance before healing and you are more sensative to things for a little while. Gaylen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2002 Report Share Posted September 4, 2002 I could be wrong, but I believe there is supposed to be a blood test that can measure what the glucose levels have been over a period of time. My diabetic mother-in-law has one done periodically that shows her highs and lows. Might want to ask about that lab? I'm not sure how it works. --- & Noelle Bender <faijcb@...> wrote: > I would really like to know what these seizures some > of you have seen look like. My son has had 3 > episodes since May (two after increasing Zoloft and > 1 before even starting Zoloft, on paxil). We are > trying to decide if they were seizures or drop in > blood sugar. A finger prick showed no hypoglycemia, > although he could still have a sudden drop in blood > sugar. Our doc at home and Dr. G both suggested an > eeg but I don't know how reliable those are if an > episode doesn't happen during the eeg ( even a 24 > hour eeg). > > The episodes look like he is suddenly falling asleep > but when I touch him he is all sweaty and clammy. > One time he came to right away, another happened in > the car with my husband, and another I was splashing > water on his face and he didn't respond, but then > when my husband called his name he looked at him and > he was then able to sing his abc's even though he > was still really out of it- he went right to sleep > for the night. > > Any thoughts? > > -Noelle > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2002 Report Share Posted September 4, 2002 In our case the seizures were obvious. The two our son had just recently involved convulsions and vomitting. The ones that he had before starting the protocol (this was over a year ago) were more severe. We are getting an eeg done, but I agree with you that unless something is happening right at that moment it might not tell you much. Especially in our case now as we have him on antiseizure meds (we did this as the two seizures happened within a 24 hour period. We get to discuss it with the neurologist tomorrow. You mentioned low blood sugar, that's interesting because we have noticed that since being on the protocol his appetite has increased (it was always good), but sometimes now when he doesn't get to eat right on time he gets really cranky, and he never used to. We felt that maybe it was low blood sugar, but tests have never indicated that. seizures > I would really like to know what these seizures some of you have seen look like. My son has had 3 episodes since May (two after increasing Zoloft and 1 before even starting Zoloft, on paxil). We are trying to decide if they were seizures or drop in blood sugar. A finger prick showed no hypoglycemia, although he could still have a sudden drop in blood sugar. Our doc at home and Dr. G both suggested an eeg but I don't know how reliable those are if an episode doesn't happen during the eeg ( even a 24 hour eeg). > > The episodes look like he is suddenly falling asleep but when I touch him he is all sweaty and clammy. One time he came to right away, another happened in the car with my husband, and another I was splashing water on his face and he didn't respond, but then when my husband called his name he looked at him and he was then able to sing his abc's even though he was still really out of it- he went right to sleep for the night. > > Any thoughts? > > -Noelle > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2002 Report Share Posted September 4, 2002 we have had no regression. :-) seizures > > > > I would really like to know what these seizures some of you have seen look > like. My son has had 3 episodes since May (two after increasing Zoloft and > 1 before even starting Zoloft, on paxil). We are trying to decide if they > were seizures or drop in blood sugar. A finger prick showed no > hypoglycemia, although he could still have a sudden drop in blood sugar. > Our doc at home and Dr. G both suggested an eeg but I don't know how > reliable those are if an episode doesn't happen during the eeg ( even a 24 > hour eeg). > > > > The episodes look like he is suddenly falling asleep but when I touch him > he is all sweaty and clammy. One time he came to right away, another > happened in the car with my husband, and another I was splashing water on > his face and he didn't respond, but then when my husband called his name he > looked at him and he was then able to sing his abc's even though he was > still really out of it- he went right to sleep for the night. > > > > Any thoughts? > > > > -Noelle > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2002 Report Share Posted September 4, 2002 My son is ravenous all the time. We have been on the protocol for six years which has helped but not healed him. He also has extremely " hypoglycemic " behavior and his obsession with food is one of our most persistent problems. He is fifteen years old and eats like a horse. He now weighs about 135 pounds and is 5'10 " . He just lost fifteen pounds after a month of steroids to treat poison ivy - which still isn't gone..... -- Original Message ----- From: Barb Katsaros Sent: Wednesday, September 04, 2002 11:36 AM Subject: Re: seizures Gaylen, What was identified as being your health problem? I've had some really weird things happen with my health also and wonder if whatever my kids have is a genetic tendency that they have inherited from me. Are you planning on seeing dr. g for yourself also? I have thought of it, but then i hold back. Maybe later... Barb --- googahly@... wrote: > In a message dated 9/4/02 9:01:15 AM Central > Daylight Time, > dmccreary@... writes: > > > > You mentioned low blood sugar, that's interesting > because we have noticed > > that since being on the protocol his appetite has > increased (it was always > > good), but sometimes now when he doesn't get to > eat right on time he gets > > really cranky, and he never used to > > That happened to me as I began to heal. There was a > period where I'd have to > eat at least a little every 2-3 hours or feel really > off. Testing never > showed hypoglycemia or diabetes but I'd really > noticed a difference if I > waited too long before eating. That lasted about a > year and then, as I was > healthier, I could space out snacks more and now > have no problem with it. I > think that once you start stirring things up, you > body goes a little out of > balance before healing and you are more sensative to > things for a little > while. > Gaylen > > > [Non-text portions of this message have been > removed] > > ===== Barb Katsaros barbkatsaros@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2002 Report Share Posted September 4, 2002 Gaylen, What was identified as being your health problem? I've had some really weird things happen with my health also and wonder if whatever my kids have is a genetic tendency that they have inherited from me. Are you planning on seeing dr. g for yourself also? I have thought of it, but then i hold back. Maybe later... Barb --- googahly@... wrote: > In a message dated 9/4/02 9:01:15 AM Central > Daylight Time, > dmccreary@... writes: > > > > You mentioned low blood sugar, that's interesting > because we have noticed > > that since being on the protocol his appetite has > increased (it was always > > good), but sometimes now when he doesn't get to > eat right on time he gets > > really cranky, and he never used to > > That happened to me as I began to heal. There was a > period where I'd have to > eat at least a little every 2-3 hours or feel really > off. Testing never > showed hypoglycemia or diabetes but I'd really > noticed a difference if I > waited too long before eating. That lasted about a > year and then, as I was > healthier, I could space out snacks more and now > have no problem with it. I > think that once you start stirring things up, you > body goes a little out of > balance before healing and you are more sensative to > things for a little > while. > Gaylen > > > [Non-text portions of this message have been > removed] > > ===== Barb Katsaros barbkatsaros@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2002 Report Share Posted September 4, 2002 In a message dated 9/4/02 10:40:01 AM Central Daylight Time, barbkatsaros@... writes: > Gaylen, What was identified as being your health problem? I was arsenic poisoned from over-spraying in our old neighborhood. I also had a candida infestation and multiple allergies/intolerances. > Are you planning on seeing dr. g for yourself also? Probably not unless Dr. G feels it's a good idea. I'm pretty healthy now and rarely have the problems I used to have. Gaylen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2002 Report Share Posted September 4, 2002 Oral, he has been on six weeks of them Re: seizures > > > Gaylen, What was identified as being your health > problem? I've had some really weird things happen > with my health also and wonder if whatever my kids > have is a genetic tendency that they have inherited > from me. Are you planning on seeing dr. g for > yourself also? I have thought of it, but then i hold > back. Maybe later... Barb > --- googahly@... wrote: > > In a message dated 9/4/02 9:01:15 AM Central > > Daylight Time, > > dmccreary@... writes: > > > > > > > You mentioned low blood sugar, that's interesting > > because we have noticed > > > that since being on the protocol his appetite has > > increased (it was always > > > good), but sometimes now when he doesn't get to > > eat right on time he gets > > > really cranky, and he never used to > > > > That happened to me as I began to heal. There was a > > period where I'd have to > > eat at least a little every 2-3 hours or feel really > > off. Testing never > > showed hypoglycemia or diabetes but I'd really > > noticed a difference if I > > waited too long before eating. That lasted about a > > year and then, as I was > > healthier, I could space out snacks more and now > > have no problem with it. I > > think that once you start stirring things up, you > > body goes a little out of > > balance before healing and you are more sensative to > > things for a little > > while. > > Gaylen > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > ===== > Barb Katsaros > barbkatsaros@... > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2002 Report Share Posted September 4, 2002 Were the steroids topical? Re: seizures > > > Gaylen, What was identified as being your health > problem? I've had some really weird things happen > with my health also and wonder if whatever my kids > have is a genetic tendency that they have inherited > from me. Are you planning on seeing dr. g for > yourself also? I have thought of it, but then i hold > back. Maybe later... Barb > --- googahly@... wrote: > > In a message dated 9/4/02 9:01:15 AM Central > > Daylight Time, > > dmccreary@... writes: > > > > > > > You mentioned low blood sugar, that's interesting > > because we have noticed > > > that since being on the protocol his appetite has > > increased (it was always > > > good), but sometimes now when he doesn't get to > > eat right on time he gets > > > really cranky, and he never used to > > > > That happened to me as I began to heal. There was a > > period where I'd have to > > eat at least a little every 2-3 hours or feel really > > off. Testing never > > showed hypoglycemia or diabetes but I'd really > > noticed a difference if I > > waited too long before eating. That lasted about a > > year and then, as I was > > healthier, I could space out snacks more and now > > have no problem with it. I > > think that once you start stirring things up, you > > body goes a little out of > > balance before healing and you are more sensative to > > things for a little > > while. > > Gaylen > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > ===== > Barb Katsaros > barbkatsaros@... > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2002 Report Share Posted September 4, 2002 My son was diagnosed with absence-type seizures that do not show up on an EEG. He does not collapse or twitch, just stares for 10-15 secs and is nonresponsive till he abruptly " snaps " out of it and is completely normal. Since putting him on an elimination/rotation diet they have greatly decreased in frequency and severity. Becky Re: seizures These could be seizure but what came to mind to me when you described this is the horrible periods of narcoleptic-type of sleepiness I'd suddenly get throughout the day when I was really ill several years ago. Allergies to certain foods would make it occur more often. Perhaps keeping a log of what he eats and is exposed to when he has these may give you another angle to look at? If it's allergy for me, it occurs 1-2 hours after eating. Gaylen Quote Link to comment Share on other sites More sharing options...
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