Guest guest Posted March 30, 2010 Report Share Posted March 30, 2010 Suggestion: Nutriiveda may reduce seizures -- Paolo Mainardi had reasonable success giving seizure-sufferers about 1.25 mg tryptophan daily for two months; Nutriveda seems to provide 1 mg per two scoops per day. I doubt any doctor would understand well how Nutriiveda might replace seizure medication. Be cautious with both the child's blood measures and with the doctor's reasoning. Cheers - On Sat, Mar 27, 2010 at 8:54 PM, Betty Dunning <bettydunning@...>wrote: > > > This is an important message: For any parent who has a child on seizure > medication it is VERY important to continue to get frequent blood testing to > measure levels. Many drugs can interfere with protein binding that makes > the seizure medication either more efficient or more toxic. No new drug or > herbal remedy should be taken without first consulting your physician. > > > > From: kiddietalk <kiddietalk@... <kiddietalk%40>> > Subject: [ ] Incredible update from Robin -please read > and share! > < %40> > Date: Saturday, March 27, 2010, 1:31 PM > > > > (If you have a child on nutriiveda and seizure medication, please contact > me lisacherab (DOT) org There are doctors now that want to study what you are > about to read) > > Nutriiveda…a life saver! > > Robin Ketchum called me from the ICU at a Georgia hospital today. " Our 26 > year old `Real Life Little Mermaid' Mel is in intensive care right this > moment and she almost died yesterday. " Before I go on I want each one > reading this to stop and please say a prayer for that she is out of > the hospital and home well soon. > > Robin was not supposed to be using her cell phone but felt it was that > important to reach out to me to update Mel's blog due to what is going on > with Mel and NutriiVeda …and seizures. This is a profound update and one to > be taken seriously by anyone who has a child on seizure medication and > nutriiveda. 's doctor is now totally convinced based on what he is > seeing that nutriiveda is " healing 's brain " I'll now explain a bit > more in detail and hope that and her loving family are home from the > hospital soon and Robin can update again herself! > > As you may know from reading Mel's blog, who was 25 yeas old when > starting NutriiVeda; went from being almost catatonic, unable to dress, > bathe, feed herself with almost no way to communicate, blank stares into > within days and weeks on nutriiveda a vibrant young woman; eager to catch up > on all the time lost, to talk, play, explore life! as you'll read in > her blog has had profound global apraxia and TBI that went undiagnosed for > most of her life which led to lack of any appropriate therapy. And due to > misdiagnosis of mental retardation and autism and the ABA therapy that came > with the autism misdiagnosis, Mel developed severe post traumatic stress > syndrome. > > Like most parents with a child today with autism or similar disorders, > 's parents tried everything they could to help their daughter over > the past two decades, and took her from professional to professional. > Various treatments, therapies and even what some today are exploring that > I'm not a fan of: off label medications for autism –in Mel's case the drug > for Alzheimer's called Namenda was tried as well with no success. As Robin > puts it most professionals gave up on –but I never did. How would > any of us be if all our life we were misdiagnosed and treated as if we were > mentally retarded and provided with therapy that was completely > inappropriate for us? As bad as that is, Mel's story got worse. Sometime in > 's early 20s in addition to everything else developed > seizures that were life threatening, was in the hospital twice near death, > and had to be put on " high " levels of the seizure medication Depakote. > > If you need to know the details of what happened from day ONE on nutriiveda > up till before the story I'm going to share please read 's entire > blog at http://littlemermai dmelanie. wordpress. com/about What I'm going > to share today is another story of misdiagnosis and another near death > moment for - but this time the story is tied into one of hope and > miracles! > > As Robin left off on her last messages as anyone can tell – is on > her way to being a normal young woman. Suddenly aware of herself as a woman, > other people around her, and wanting to participate in life's fun and > activity every moment. Robin who was 's primary care giver went from > being house bound to watching 's every moment fearful of another life > threatening seizure, not being able to take to stores or just about > anywhere, or a doctor's appointment at times without sedation, to one who > all of a sudden could enjoy life with her daughters and husband! Life was > good and that's where we left off. Due to the lack of any seizure activity > at all Mel's seizure meds were reduced a few times. There were no seizures > and no more " episodes of post traumatic stress syndrome " that the Ketchum > family feared. Mel was working with a new Prompt speech pathologist named > Martha and was scheduled for a new occupational therapy appointment. > She was talking not just to people she knew but to people she didn't. > And…at a recent chiropractic office it appears even flirted a bit > with the young handsome doctor who told her how beautiful she was and told > her that she " reminded him of an actress " …so yes, things were on their way! > > But about a week ago appeared to regress in all areas. She was once > again unable to feed herself and was not verbal. In addition she was acting > very unusual. At first the belief was that 's seizures were back as > well as the post traumatic stress syndrome. Immediately 's Depakote > medication which had been reduced was ordered back up to the original dosage > and Mel was brought to the hospital. Tests were run but just like history > –things were missed, and misdiagnosed. One thing that was discovered > immediately is that did not have any seizure activity at all. The > team of doctors did want to stay on Nutriiveda because it appeared > to be helping her and in addition it was the only thing that would > eat. is up to 6 scoops a day for therapeutic reasons and she has it > mixed into apple sauce. was not getting any better however. One > neurologist ran a series of seizure tests on and attempted to > trigger a seizure with lights, pain (!!!) everything, even walking for 30 > hours-but no seizures at all. > > While looking for seizures what was missed is that had somehow > developed pneumonia. Apparently most of the ICU is filled with what is being > called a communicable outbreak of pneumonia in this Georgia area. I found > this online just now when I searched for this `CDC sees sustained H1N1 > activity in Southeast' Mar 26, 2010 http://www.cidrap. umn.edu/cidrap/content/influenz a/swineflu/ news/mar2610fluv iew.html The strange thing is > that for the first part of the week had no symptoms at all of being > sick. No fever or coughing- nothing. She did start to complain of pain but > of course that was at first thought to be headaches linked to seizures. > Apparently I've been just told by Robin that pneumonia is painful. > > Due to undiagnosed pneumonia however 's brain, heart, and kidneys > were all at risk. What the doctors and Mel's family are convinced of is that > " Mel saved her kidneys " " She knew to drink lots of water to flush out her > kidneys " What is incredible about this is that when first started > nutriiveda she never liked to drink anything. It was a struggle to make sure > she had enough hydration –but due to nutriiveda learned to be more > in touch with her body's needs and knew she needed water. If she did not > drink all the water she did (she even got the cup and filled up the water on > her own!!) she would have needed a new kidney by now. Why? Apparently in > addition to her body dealing with pneumonia….her doctors discovered that the > Depakote seizure medication that had been on for the past 4 years > was now at a toxic level in her body as (I'm going to bold this on purpose) > HER BODY NO LONGER NEEDED IT!!!! > > Yesterday morning almost died from all that went on –but that > little trooper pulled through. A series of more tests, EEG, MRI etc were run > and there are a number of unexplainable changes in 's brain " due to > NutriiVeda " according to the doctors. From 3 years ago 's brain is > " healing " and " normal " There is no doubt that by the " end of this year > will be off all seizure medication " and that she is " not to stop > taking NutriiVeda every day " > > The head charge nurse hearing all of this went to Robin to find out more > information for her mother who has suffered from seizures all her life and > after hearing more wanted NutriiVeda for her mom. Robin gave her one of her > own canisters, but the nurse refused to take it without paying J > > And this brings me to why Robin felt it so important to update Mel's blog > today. For any parent who has a child with seizures on medication it is VERY > important to get frequent blood testing to measure levels. 's level > when it went toxic from Depakote seizure medication went to 145 which is > toxic –the doctors do not want it to be any higher than 50 for right > now. To reiterate they expect her to be OFF all seizure medication by the > " end of this year " (YAY!!!) Again the " only explanation " for this is that > NutriiVeda is " healing 's brain " due to not only the changed reaction > in the medication she was always on –but the actual neuro tested changes in > her brain!!! This is just amazing! > > The one other point I want to make is that prior to the heavy > antibiotics was talking to her nurses and asking to go home. " I am not sick. > Can I go home now please? " She was verbal and able to answer yes and no > questions as well as ask the nurses for " lunch " " to drink juice " " a movie " > and other things she wanted! But right now is no longer talking but > we just know once she is off of the antibiotics and able to get back to her > 6 scoops a day of NutriiVeda she'll back to her new self! The high dosage of > antibiotics were started last night and is not allowed to eat any > foods due to choking fear so for the next day or so more she will not > unfortunately be on NutriiVeda - the incredible NutriiVeda for a few more > days; the same NutriiVeda that now more than just her family is crediting > with " saving Mel's life " We don't know if NutriiVeda kept Mel from having > the symptoms of being sick that in turn made it difficult to diagnose her > accurately but we have to be thankful that her pneumonia was diagnosed. As > I write this now is still in ICU. Robin is thankful that the > hospital is letting her sleep and shower there so that she can stay with > 24/7 till she makes it through this. The fever has broken and the > hope is that can go home sometime early next week. Please again take > a moment to say a prayer for our " Real Life Little Mermaid " > Ketuchum. The poor thing has been through so much- she needs the chance to > live her life that she never had and was just beginning to have. And…to > perhaps flirt with that handsome young doctor again! J > > you have all of my prayers. And Robin you are our hero! And to all > the professionals out there –please read this and remember that things are > not always how to appear. Please take the time to know that each case is not > only unique –but a life. And in this case –'s life. > > Thank you. > > ===== > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2010 Report Share Posted March 30, 2010 Another f/u on and NV.  A bit of back ground. started NV four scoops a day back at the end of Jan. The longest he has ever gone w/o a seizure was 24days. On April 4th it will be TWO MONTHS!!! His seizure medications are the same as before we started, so it leads me to believe NV must be the contributing factor:-) However, in the past week or so 's behavior has been awful!! He tends to lean toward ODD when his medication levels are too high. So taking into account that NV might be interfering with is seizure levels, I contacted his Neurologist about my hypothesis.  I am very happy with his doctor even though he did not give his endorsement for to start NV. (not main stream). With that being said he is aware that we are doing it anyway. He did agree that we need to get labs done, which we are in the next day or so. I am interested in finding out how his levels are at this point. Again the only thing that makes me think the levels are at a higher concentration is his behavior.  I will keep you posted on what the finds are and if we decrease his anti seizure medications. I could not be happier with the results so far. We were getting ready to talk surgery options for , maybe not anymore!!! *I think his artic and attention have also improved but the seizures are the most measurable. Alyssa ( 9yrs, CAS, PDD/NOS, Seizure)  ________________________________ From: Tim Stearns <tzebstearns@...> Sent: Tue, March 30, 2010 6:15:41 AM Subject: Re: [ ] re: blood levels Suggestion: Nutriiveda may reduce seizures -- Paolo Mainardi had reasonable success giving seizure-sufferers about 1.25 mg tryptophan daily for two months; Nutriveda seems to provide 1 mg per two scoops per day. I doubt any doctor would understand well how Nutriiveda might replace seizure medication. Be cautious with both the child's blood measures and with the doctor's reasoning. Cheers - > > > From: kiddietalk <kiddietalk@... <kiddietalk%40>> > Subject: [ ] Incredible update from Robin -please read > and share! > < %40> > Date: Saturday, March 27, 2010, 1:31 PM > > > > (If you have a child on nutriiveda and seizure medication, please contact > me lisacherab (DOT) org There are doctors now that want to study what you are > about to read) > > Nutriiveda…a life saver! > > Robin Ketchum called me from the ICU at a Georgia hospital today. " Our 26 > year old `Real Life Little Mermaid' Mel is in intensive care right this > moment and she almost died yesterday. " Before I go on I want each one > reading this to stop and please say a prayer for that she is out of > the hospital and home well soon. > > Robin was not supposed to be using her cell phone but felt it was that > important to reach out to me to update Mel's blog due to what is going on > with Mel and NutriiVeda …and seizures. This is a profound update and one to > be taken seriously by anyone who has a child on seizure medication and > nutriiveda. 's doctor is now totally convinced based on what he is > seeing that nutriiveda is " healing 's brain " I'll now explain a bit > more in detail and hope that and her loving family are home from the > hospital soon and Robin can update again herself! > > As you may know from reading Mel's blog, who was 25 yeas old when > starting NutriiVeda; went from being almost catatonic, unable to dress, > bathe, feed herself with almost no way to communicate, blank stares into > within days and weeks on nutriiveda a vibrant young woman; eager to catch up > on all the time lost, to talk, play, explore life! as you'll read in > her blog has had profound global apraxia and TBI that went undiagnosed for > most of her life which led to lack of any appropriate therapy. And due to > misdiagnosis of mental retardation and autism and the ABA therapy that came > with the autism misdiagnosis, Mel developed severe post traumatic stress > syndrome. > > Like most parents with a child today with autism or similar disorders, > 's parents tried everything they could to help their daughter over > the past two decades, and took her from professional to professional. > Various treatments, therapies and even what some today are exploring that > I'm not a fan of: off label medications for autism –in Mel's case the drug > for Alzheimer's called Namenda was tried as well with no success. As Robin > puts it most professionals gave up on –but I never did. How would > any of us be if all our life we were misdiagnosed and treated as if we were > mentally retarded and provided with therapy that was completely > inappropriate for us? As bad as that is, Mel's story got worse. Sometime in > 's early 20s in addition to everything else developed > seizures that were life threatening, was in the hospital twice near death, > and had to be put on " high " levels of the seizure medication Depakote. > > If you need to know the details of what happened from day ONE on nutriiveda > up till before the story I'm going to share please read 's entire > blog at http://littlemermaidmelanie.wordpress.com/about What I'm going > to share today is another story of misdiagnosis and another near death > moment for - but this time the story is tied into one of hope and > miracles! > > As Robin left off on her last messages as anyone can tell – is on > her way to being a normal young woman. Suddenly aware of herself as a woman, > other people around her, and wanting to participate in life's fun and > activity every moment. Robin who was 's primary care giver went from > being house bound to watching 's every moment fearful of another life > threatening seizure, not being able to take to stores or just about > anywhere, or a doctor's appointment at times without sedation, to one who > all of a sudden could enjoy life with her daughters and husband! Life was > good and that's where we left off. Due to the lack of any seizure activity > at all Mel's seizure meds were reduced a few times. There were no seizures > and no more " episodes of post traumatic stress syndrome " that the Ketchum > family feared. Mel was working with a new Prompt speech pathologist named > Martha and was scheduled for a new occupational therapy appointment. > She was talking not just to people she knew but to people she didn't. > And…at a recent chiropractic office it appears even flirted a bit > with the young handsome doctor who told her how beautiful she was and told > her that she " reminded him of an actress " …so yes, things were on their way! > > But about a week ago appeared to regress in all areas. She was once > again unable to feed herself and was not verbal. In addition she was acting > very unusual. At first the belief was that 's seizures were back as > well as the post traumatic stress syndrome. Immediately 's Depakote > medication which had been reduced was ordered back up to the original dosage > and Mel was brought to the hospital. Tests were run but just like history > –things were missed, and misdiagnosed. One thing that was discovered > immediately is that did not have any seizure activity at all. The > team of doctors did want to stay on Nutriiveda because it appeared > to be helping her and in addition it was the only thing that would > eat. is up to 6 scoops a day for therapeutic reasons and she has it > mixed into apple sauce. was not getting any better however. One > neurologist ran a series of seizure tests on and attempted to > trigger a seizure with lights, pain (!!!) everything, even walking for 30 > hours-but no seizures at all. > > While looking for seizures what was missed is that had somehow > developed pneumonia. Apparently most of the ICU is filled with what is being > called a communicable outbreak of pneumonia in this Georgia area. I found > this online just now when I searched for this `CDC sees sustained H1N1 > activity in Southeast' Mar 26, 2010 http://www.cidrap.umn.edu/cidrap/content/influenz a/swineflu/news/mar2610fluview.html The strange thing is > that for the first part of the week had no symptoms at all of being > sick. No fever or coughing- nothing. She did start to complain of pain but > of course that was at first thought to be headaches linked to seizures. > Apparently I've been just told by Robin that pneumonia is painful. > > Due to undiagnosed pneumonia however 's brain, heart, and kidneys > were all at risk. What the doctors and Mel's family are convinced of is that > " Mel saved her kidneys " " She knew to drink lots of water to flush out her > kidneys " What is incredible about this is that when first started > nutriiveda she never liked to drink anything. It was a struggle to make sure > she had enough hydration –but due to nutriiveda learned to be more > in touch with her body's needs and knew she needed water. If she did not > drink all the water she did (she even got the cup and filled up the water on > her own!!) she would have needed a new kidney by now. Why? Apparently in > addition to her body dealing with pneumonia….her doctors discovered that the > Depakote seizure medication that had been on for the past 4 years > was now at a toxic level in her body as (I'm going to bold this on purpose) > HER BODY NO LONGER NEEDED IT!!!! > > Yesterday morning almost died from all that went on –but that > little trooper pulled through. A series of more tests, EEG, MRI etc were run > and there are a number of unexplainable changes in 's brain " due to > NutriiVeda " according to the doctors. From 3 years ago 's brain is > " healing " and " normal " There is no doubt that by the " end of this year > will be off all seizure medication " and that she is " not to stop > taking NutriiVeda every day " > > The head charge nurse hearing all of this went to Robin to find out more > information for her mother who has suffered from seizures all her life and > after hearing more wanted NutriiVeda for her mom. Robin gave her one of her > own canisters, but the nurse refused to take it without paying J > > And this brings me to why Robin felt it so important to update Mel's blog > today. For any parent who has a child with seizures on medication it is VERY > important to get frequent blood testing to measure levels. 's level > when it went toxic from Depakote seizure medication went to 145 which is > toxic –the doctors do not want it to be any higher than 50 for right > now. To reiterate they expect her to be OFF all seizure medication by the > " end of this year " (YAY!!!) Again the " only explanation " for this is that > NutriiVeda is " healing 's brain " due to not only the changed reaction > in the medication she was always on –but the actual neuro tested changes in > her brain!!! This is just amazing! > > The one other point I want to make is that prior to the heavy > antibiotics was talking to her nurses and asking to go home. " I am not sick. > Can I go home now please? " She was verbal and able to answer yes and no > questions as well as ask the nurses for " lunch " " to drink juice " " a movie " > and other things she wanted! But right now is no longer talking but > we just know once she is off of the antibiotics and able to get back to her > 6 scoops a day of NutriiVeda she'll back to her new self! The high dosage of > antibiotics were started last night and is not allowed to eat any > foods due to choking fear so for the next day or so more she will not > unfortunately be on NutriiVeda - the incredible NutriiVeda for a few more > days; the same NutriiVeda that now more than just her family is crediting > with " saving Mel's life " We don't know if NutriiVeda kept Mel from having > the symptoms of being sick that in turn made it difficult to diagnose her > accurately but we have to be thankful that her pneumonia was diagnosed. As > I write this now is still in ICU. Robin is thankful that the > hospital is letting her sleep and shower there so that she can stay with > 24/7 till she makes it through this. The fever has broken and the > hope is that can go home sometime early next week. Please again take > a moment to say a prayer for our " Real Life Little Mermaid " > Ketuchum. The poor thing has been through so much- she needs the chance to > live her life that she never had and was just beginning to have. And…to > perhaps flirt with that handsome young doctor again! J > > you have all of my prayers. And Robin you are our hero! And to all > the professionals out there –please read this and remember that things are > not always how to appear. Please take the time to know that each case is not > only unique –but a life. And in this case –'s life. > > Thank you. > > ===== > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2010 Report Share Posted March 30, 2010 Woo hoo!! I look forward to hearing his lab results!! It’s great to hear such positive results. Perhaps he doesn’t need as much of his seizure meds…. Warmest wishes, Barbara Barbara A. , M.S., CCC-SLP Executive Director/ Help Me Speak, LLC <http://www.helpmespeak.com/> http://www.helpmespeak.com (o) 410-442-9791 (f) 410-442-9783 2500 Wallington Way; Suite 103 Marriottsville, MD 21104 From: [mailto: ] On Behalf Of Alyssa Nagy Sent: Tuesday, March 30, 2010 12:30 PM Subject: Re: [ ] re: blood levels Another f/u on and NV. A bit of back ground. started NV four scoops a day back at the end of Jan. The longest he has ever gone w/o a seizure was 24days. On April 4th it will be TWO MONTHS!!! His seizure medications are the same as before we started, so it leads me to believe NV must be the contributing factor:-) However, in the past week or so 's behavior has been awful!! He tends to lean toward ODD when his medication levels are too high. So taking into account that NV might be interfering with is seizure levels, I contacted his Neurologist about my hypothesis. I am very happy with his doctor even though he did not give his endorsement for to start NV. (not main stream). With that being said he is aware that we are doing it anyway. He did agree that we need to get labs done, which we are in the next day or so. I am interested in finding out how his levels are at this point. Again the only thing that makes me think the levels are at a higher concentration is his behavior. I will keep you posted on what the finds are and if we decrease his anti seizure medications. I could not be happier with the results so far. We were getting ready to talk surgery options for , maybe not anymore!!! *I think his artic and attention have also improved but the seizures are the most measurable. Alyssa ( 9yrs, CAS, PDD/NOS, Seizure) > > > From: kiddietalk <kiddietalk@... <mailto:kiddietalk%40> <kiddietalk%40>> > Subject: [ ] Incredible update from Robin -please read > and share! > <mailto: %40> < %40> > Date: Saturday, March 27, 2010, 1:31 PM > > > > (If you have a child on nutriiveda and seizure medication, please contact > me lisacherab (DOT) org There are doctors now that want to study what you are > about to read) > > Nutriiveda…a life saver! > > Robin Ketchum called me from the ICU at a Georgia hospital today. " Our 26 > year old `Real Life Little Mermaid' Mel is in intensive care right this > moment and she almost died yesterday. " Before I go on I want each one > reading this to stop and please say a prayer for that she is out of > the hospital and home well soon. > > Robin was not supposed to be using her cell phone but felt it was that > important to reach out to me to update Mel's blog due to what is going on > with Mel and NutriiVeda …and seizures. This is a profound update and one to > be taken seriously by anyone who has a child on seizure medication and > nutriiveda. 's doctor is now totally convinced based on what he is > seeing that nutriiveda is " healing 's brain " I'll now explain a bit > more in detail and hope that and her loving family are home from the > hospital soon and Robin can update again herself! > > As you may know from reading Mel's blog, who was 25 yeas old when > starting NutriiVeda; went from being almost catatonic, unable to dress, > bathe, feed herself with almost no way to communicate, blank stares into > within days and weeks on nutriiveda a vibrant young woman; eager to catch up > on all the time lost, to talk, play, explore life! as you'll read in > her blog has had profound global apraxia and TBI that went undiagnosed for > most of her life which led to lack of any appropriate therapy. And due to > misdiagnosis of mental retardation and autism and the ABA therapy that came > with the autism misdiagnosis, Mel developed severe post traumatic stress > syndrome. > > Like most parents with a child today with autism or similar disorders, > 's parents tried everything they could to help their daughter over > the past two decades, and took her from professional to professional. > Various treatments, therapies and even what some today are exploring that > I'm not a fan of: off label medications for autism –in Mel's case the drug > for Alzheimer's called Namenda was tried as well with no success. As Robin > puts it most professionals gave up on –but I never did. How would > any of us be if all our life we were misdiagnosed and treated as if we were > mentally retarded and provided with therapy that was completely > inappropriate for us? As bad as that is, Mel's story got worse. Sometime in > 's early 20s in addition to everything else developed > seizures that were life threatening, was in the hospital twice near death, > and had to be put on " high " levels of the seizure medication Depakote. > > If you need to know the details of what happened from day ONE on nutriiveda > up till before the story I'm going to share please read 's entire > blog at http://littlemermaidmelanie.wordpress.com/about What I'm going > to share today is another story of misdiagnosis and another near death > moment for - but this time the story is tied into one of hope and > miracles! > > As Robin left off on her last messages as anyone can tell – is on > her way to being a normal young woman. Suddenly aware of herself as a woman, > other people around her, and wanting to participate in life's fun and > activity every moment. Robin who was 's primary care giver went from > being house bound to watching 's every moment fearful of another life > threatening seizure, not being able to take to stores or just about > anywhere, or a doctor's appointment at times without sedation, to one who > all of a sudden could enjoy life with her daughters and husband! Life was > good and that's where we left off. Due to the lack of any seizure activity > at all Mel's seizure meds were reduced a few times. There were no seizures > and no more " episodes of post traumatic stress syndrome " that the Ketchum > family feared. Mel was working with a new Prompt speech pathologist named > Martha and was scheduled for a new occupational therapy appointment. > She was talking not just to people she knew but to people she didn't. > And…at a recent chiropractic office it appears even flirted a bit > with the young handsome doctor who told her how beautiful she was and told > her that she " reminded him of an actress " …so yes, things were on their way! > > But about a week ago appeared to regress in all areas. She was once > again unable to feed herself and was not verbal. In addition she was acting > very unusual. At first the belief was that 's seizures were back as > well as the post traumatic stress syndrome. Immediately 's Depakote > medication which had been reduced was ordered back up to the original dosage > and Mel was brought to the hospital. Tests were run but just like history > –things were missed, and misdiagnosed. One thing that was discovered > immediately is that did not have any seizure activity at all. The > team of doctors did want to stay on Nutriiveda because it appeared > to be helping her and in addition it was the only thing that would > eat. is up to 6 scoops a day for therapeutic reasons and she has it > mixed into apple sauce. was not getting any better however. One > neurologist ran a series of seizure tests on and attempted to > trigger a seizure with lights, pain (!!!) everything, even walking for 30 > hours-but no seizures at all. > > While looking for seizures what was missed is that had somehow > developed pneumonia. Apparently most of the ICU is filled with what is being > called a communicable outbreak of pneumonia in this Georgia area. I found > this online just now when I searched for this `CDC sees sustained H1N1 > activity in Southeast' Mar 26, 2010 http://www.cidrap.umn.edu/cidrap/content/influenz a/swineflu/news/mar2610fluview.html The strange thing is > that for the first part of the week had no symptoms at all of being > sick. No fever or coughing- nothing. She did start to complain of pain but > of course that was at first thought to be headaches linked to seizures. > Apparently I've been just told by Robin that pneumonia is painful. > > Due to undiagnosed pneumonia however 's brain, heart, and kidneys > were all at risk. What the doctors and Mel's family are convinced of is that > " Mel saved her kidneys " " She knew to drink lots of water to flush out her > kidneys " What is incredible about this is that when first started > nutriiveda she never liked to drink anything. It was a struggle to make sure > she had enough hydration –but due to nutriiveda learned to be more > in touch with her body's needs and knew she needed water. If she did not > drink all the water she did (she even got the cup and filled up the water on > her own!!) she would have needed a new kidney by now. Why? Apparently in > addition to her body dealing with pneumonia….her doctors discovered that the > Depakote seizure medication that had been on for the past 4 years > was now at a toxic level in her body as (I'm going to bold this on purpose) > HER BODY NO LONGER NEEDED IT!!!! > > Yesterday morning almost died from all that went on –but that > little trooper pulled through. A series of more tests, EEG, MRI etc were run > and there are a number of unexplainable changes in 's brain " due to > NutriiVeda " according to the doctors. From 3 years ago 's brain is > " healing " and " normal " There is no doubt that by the " end of this year > will be off all seizure medication " and that she is " not to stop > taking NutriiVeda every day " > > The head charge nurse hearing all of this went to Robin to find out more > information for her mother who has suffered from seizures all her life and > after hearing more wanted NutriiVeda for her mom. Robin gave her one of her > own canisters, but the nurse refused to take it without paying J > > And this brings me to why Robin felt it so important to update Mel's blog > today. For any parent who has a child with seizures on medication it is VERY > important to get frequent blood testing to measure levels. 's level > when it went toxic from Depakote seizure medication went to 145 which is > toxic –the doctors do not want it to be any higher than 50 for right > now. To reiterate they expect her to be OFF all seizure medication by the > " end of this year " (YAY!!!) Again the " only explanation " for this is that > NutriiVeda is " healing 's brain " due to not only the changed reaction > in the medication she was always on –but the actual neuro tested changes in > her brain!!! This is just amazing! > > The one other point I want to make is that prior to the heavy > antibiotics was talking to her nurses and asking to go home. " I am not sick. > Can I go home now please? " She was verbal and able to answer yes and no > questions as well as ask the nurses for " lunch " " to drink juice " " a movie " > and other things she wanted! But right now is no longer talking but > we just know once she is off of the antibiotics and able to get back to her > 6 scoops a day of NutriiVeda she'll back to her new self! The high dosage of > antibiotics were started last night and is not allowed to eat any > foods due to choking fear so for the next day or so more she will not > unfortunately be on NutriiVeda - the incredible NutriiVeda for a few more > days; the same NutriiVeda that now more than just her family is crediting > with " saving Mel's life " We don't know if NutriiVeda kept Mel from having > the symptoms of being sick that in turn made it difficult to diagnose her > accurately but we have to be thankful that her pneumonia was diagnosed. As > I write this now is still in ICU. Robin is thankful that the > hospital is letting her sleep and shower there so that she can stay with > 24/7 till she makes it through this. The fever has broken and the > hope is that can go home sometime early next week. Please again take > a moment to say a prayer for our " Real Life Little Mermaid " > Ketuchum. The poor thing has been through so much- she needs the chance to > live her life that she never had and was just beginning to have. And…to > perhaps flirt with that handsome young doctor again! J > > you have all of my prayers. And Robin you are our hero! And to all > the professionals out there –please read this and remember that things are > not always how to appear. Please take the time to know that each case is not > only unique –but a life. And in this case –'s life. > > Thank you. > > ===== > Quote Link to comment Share on other sites More sharing options...
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