By Stacy N,
The phone rings hello Mrs. Moore this is the school nurse calling in regards to your son Tyree. Tyree’s teacher Ms. Long is concerned that, maybe Tyree is not getting enough sleep at night. For several days now, Tyree has been falling asleep in class and she would likes to set a meeting with you to discuss possible solutions to help you with this matter. Can you come up to the school on next Monday at 3pm? Great I will see you than. I attended this meeting not knowing what to expect but hoping to hear solutions as to how to help my son but, instead the meeting resulted with questioning my abilities of being a responsible parent. In no way was I going to allow anyone to assume based on my son sleeping in class, that I was an unfit parent in any way. So immediately I searched for a Child Neurologist to help me understand my son’s situation. After many tests, and sleep studies my nine year old son was given the diagnosis of Narcolepsy. Narcolepsy is a neurologic disorder that is incurable and therefore requires lifelong treatment. Inordinate daytime sleepiness is a common symptom associated with this sleeping disorder, and can be managed partially with medication (Thorpy, 2007). A person with this disorder will experience sudden laughter, and have weakening in the emotional muscles which is called “cataplexy” (Thorpy, Michael J. Lifelong Learning in Neurology, 13 (3 Sleep Disorders): 101-114, June 2007).
Narcolepsy affects over 150,000 Americans, and is explained as a sudden, unexplained “sleep attack” during daytime hours (American Psychiatric Association, 2013: Siegel, 2004).
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Right in the middle of a conversation, and or activity, Tyree would have these episodes of uncontrollable laugher and sleep-attacks where he would suddenly fall asleep in a slump position on the floor or while sitting in a chair. Cataplexy is triggered by the occurrence of sudden emotion (Thorpy, 2006). Often times Tyree would say to me “mom I can still hear you but, I am unable to respond”. This would normally occur during our family activities when we were all having fun. To tell you the truth, it was very unsettling for me to witness my child in this situation but, at the same time, I knew that I had to be strong to be able to help him and also remain level headed for my own sanity. Although, this sleeping disorder called Narcolepsy had become part of our lives without our permission, we did learn ways to not allow it to consume us in anyway.
The treatment of narcolepsy involves both behavioral and pharmacologic management (Thorpy, 2007). Narcolepsy also interfered with Tyree’s cognitive abilities such as memory, and concentration, so Tyree received behavior counseling to help him process, and understand why he was receiving this medical treatment. Tyree would often be angry because he did not want to cope with the psychological aspect of narcolepsy that would cause him to become frustrated with himself, and feelings of being burden to the family. I assured him that he was my son and no matter what, I would always be there to help him. After several trials and errors of experiencing with different medications, my son Tyree was finally stabilized on two different medications a
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(Stimulant) to manage the daytime sleepiness, and the other was (heterocyclic) to control the cataplexy episodes which he had regularly experienced.
Until the End
Tyree was diagnosed with narcolepsy in 1992 at the age of nine years old. My son learned how to live with this sleeping disorder, and the various medications that were prescribed to him by a medical professional until the end of his life at the age of twenty-five years old, until the day he passed on July 30, 2008 due to heart failure complications. As I often think of my son Tyree, he may have been here with me “only for a short while”, but he will remain with me, forever in my heart and memories. Whenever I encounter a parent who has a child facing any type of physical challenge, I try to reach out and give them moral support. I follow the golden rule in my faith which is to “Do to others as you would have them to do you” Luke 6:31 (NIV). and you will get the same in return eventually.
Thorpy, Michael J. Lifelong Learning in Neurology, (2007).
The Bible New International Version