Melanie’s update: Nutriiveda…a life saver!
If you have a child on nutriiveda and seizure medication, please contact me firstname.lastname@example.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 Melanie 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. Melanie’s doctor is now totally convinced based on what he is seeing that nutriiveda is “healing Melanie’s brain” I’ll now explain a bit more in detail and hope that Melanie 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, Melanie 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! Melanie 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, Melanie’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 Melanie –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 Melanie’s early 20s in addition to everything else Melanie 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 Melanie’s entire blog athttp://littlemermaidmelanie.wordpress.com/about What I’m going to share today is another story of misdiagnosis and another near death moment for Melanie- 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 –Melanie 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 Melanie’s primary care giver went from being house bound to watching Melanie’s every moment fearful of another life threatening seizure, not being able to take Melanie 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 Melanie 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 Melanie 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 Melanie’s seizures were back as well as the post traumatic stress syndrome. Immediately Melanie’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 Melanie did not have any seizure activity at all. The team of doctors did want Melanie to stay on Nutriiveda because it appeared to be helping her and in addition it was the only thing that Melanie would eat. Melanie is up to 6 scoops a day for therapeutic reasons and she has it mixed into apple sauce. Melanie was not getting any better however. One neurologist ran a series of seizure tests on Melanie 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 Melanie 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, 2010http://www.cidrap.umn.edu/cidrap/content/influenza/swineflu/news/mar2610fluview.htmlThe strange thing is that for the first part of the week Melanie 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 Melanie’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 Melanie first started nutriiveda she never liked to drink anything. It was a struggle to make sure she had enough hydration –but due to nutriiveda Melanie 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 Melanie 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 Melanie 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 Melanie’s brain “due to NutriiVeda” according to the doctors. From 3 years ago Melanie’s brain is “healing” and “normal” There is no doubt that by the “end of this year Melanie 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. Melanie’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 Melanie 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 Melanie’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 Melanie 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 Melanie 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 Melanie 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 Melanie is still in ICU. Robin is thankful that the hospital is letting her sleep and shower there so that she can stay with Melanie 24/7 till she makes it through this. The fever has broken and the hope is that Melanie can go home sometime early next week. Please again take a moment to say a prayer for our “Real Life Little Mermaid” Melanie 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
Melanie 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 –Melanie’s life.
For more information on what nutriiveda is please visit http://www.pursuitofresearch.org