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A Bill Of Rights For Periodic Paralysis Patients: The Periodic Paralysis Network A.S.E.A. Series: Volume One (The Periodic Paralysis Network A.S.E.A ... Support, Education, Advocacy) (Volume 1) Paperback – September 18, 2015
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About the Author
Calvin and Susan Q. Knittle-Hunter are the co-creators, co-founders and co-directors of the Periodic Paralysis Network, Inc. (PPNI), an independent, educational corporation, designed to provide support, education and advocacy to individuals with Periodic Paralysis (PP). Susan, the Managing Director of PPNI, earned B.S. degrees in Psychology and Special Education at the University of Utah and spent many years as a teacher and case manager working with children and adults with disabilities. She suffers from the rare and disabling mineral metabolic disorder called Periodic Paralysis. Calvin, the Primary Director of PPNI, earned B.S. degrees in Behavioral Science and Psychology at Westminster College and the University of Utah. He also holds a M.Ed. degree in Special Education and M.S. degree in Information Technology from the University of Utah and Capella University. Calvin worked in a variety of fields including teaching, corrections and case management. Calvin and Susan have co-authored and co-published four books; living with Periodic Paralysis: The Mystery Unraveled, The Periodic Paralysis Guide and Workbook: Be The Best You Can Be Naturally, Sotos Syndrome: A Tribute to Sandy and Moments In Time: At Home In The Woods.
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My son almost died twice in 24 hours while In intensive care while at a well known hospitals that is one of the top hospitals in the world.
They were giving him a potassium IV that was mixed with dextrose and it almost killed him.
My son was an adult that went there by ambulance, fortunately they called my wife apparently because they thought he was about to die. They said they wanted to open a port to increase the IV . Thank God she told him to stop and wait for me to get there.
When I got there my son's heart rate and breathing were at a critical low. The doctor of this famous hospital was sweating profusely and thought he was losing his patient.
After telling the Doctor where he went wrong and why he was ready to listen to my suggestions.
After I took over my sons vitals stopped getting worse. A couple of hours later my son was recovering. By then it was midnight and the doctor went home to sleep.
The ICU nurse had her instructions from the doctor, but those instructions also would have killed him. I told her the right way to do things. She refused I got her to call the doctor at home; he said to do whatever I said.
Another hour later my son was sitting up and eating, another couple hours he was walking and fine.
Periodic paralysis is not hypokalemia, it's a different disease. If your doctor says he's treated dozens of cases like this he doesn't know what he's talking about.
There's only a one in 500 chance that you would find a doctor that has ever dealt with it. Even if you do find that one in 500 doctor that has seen a patient with it doesn't necessarily mean he or she knows the right way to deal with it.
This book describes what it takes to deal with doctors. Doctors that are used to knowing more than the patients. Doctors that are used to calling all the shots and impressing their team of other doctors and nurses.
I have had to literally stand toe to toe nose to nose talking to a doctor to save my sons life. This book can help you do the same.