This video truly makes you cry!
Monday, July 23, 2012
Don't give up! You are loved!
ALL THE GIRLS AND BOYS OUT THERE THAT FEEL BAD ABOUT THEMSELVES LISTEN TO THIS:
Signs of Narcolepsy or Cataplexy Attack
Well, I talked about my metabolism, my nighttime eating disorder, my sleepiness, and my tween life but I haven't told you about the signs that tell me I am going to fall asleep. You are probably thinking signs? What does she mean? I mean like "colored lights"and "LMBTS" (laughing my body to sleep!) The colored lights means i look around after seeing a bright light and i see colors like blue, pink, or purple and it hurts my eyes. Well when your eyes hurt you close your eyes a lot right? Well, i get sleepy and i can't read anything or my eyes will hurt.
In fourth grade I........
I used to fall asleep while my teacher was reading our story of the week to us. I wouldn't even know what the story was about. But thankfully, I have great friends. If I am asleep and everyone is turning the page my friend will notice me not turning the page. So she wakes me up. And when we read the story it is in the morning at like 9:00 or 10:00 so I fall asleep then. My friend thankfully tells me what the story was about at lunch or recess.
Continuing on about the signs that tell me am going to fall asleep soon.......
The next thing is weak in the LMBTS! I came up with that because everytime someone says something funny or i see something funny I laugh so hard that i have to hold on to something so i don't fall. One time, I was goofing around with my friend and she did something really funny and i started laughing so hard that i had to lay on the floor or i would have a sleep attack. Crazy Huh?
P.S: I got LMBTS by LMHO!
In fourth grade I........
I used to fall asleep while my teacher was reading our story of the week to us. I wouldn't even know what the story was about. But thankfully, I have great friends. If I am asleep and everyone is turning the page my friend will notice me not turning the page. So she wakes me up. And when we read the story it is in the morning at like 9:00 or 10:00 so I fall asleep then. My friend thankfully tells me what the story was about at lunch or recess.
Continuing on about the signs that tell me am going to fall asleep soon.......
The next thing is weak in the LMBTS! I came up with that because everytime someone says something funny or i see something funny I laugh so hard that i have to hold on to something so i don't fall. One time, I was goofing around with my friend and she did something really funny and i started laughing so hard that i had to lay on the floor or i would have a sleep attack. Crazy Huh?
P.S: I got LMBTS by LMHO!
Night Eating Syndrome & Narcolepsy
Body image is already a problem for young girls in America. They are bombarded with images of unrealistically perfect photo-shopped models starving themselves to death. Yay for Seventeen Magazine, who recently agreed to publish 1 spread a month of non-photo-shopped photos of "normal" girls. Entering puberty changes your body and your hormones, and at the same time you start to care what boys think of you. Awesome time, right? Raise your hand if you'd like to go back and relive tweendom.
Well, Narcoleptic here has been really struggling with her weight. We recently discovered she's been getting up and eating high-fat high carb snacks at night. This was initially a source of shame for her. I initially thought it was a choice and she was perhaps sneaking food because she was being limited during the day. Here I thought I was helping her, when in reality I was making her feel deprived so much that she was sneaking and lying to me about it. :(
We had a few heart to hearts and normally when this happens she makes the right choices. The night eating continued. She lied again about it. When confronted in a very gentle manner she cried and said she didn't want to disappoint me. OhMyGod, she's breaking my heart. So, after another heart to heart where I reassured her I just wanted to help her and that I understand, she felt better. I didn't though. I spent several hours researching last night trying to get some insight into how to handle this new development. On the one hand, her overall health is important and she's developing some bad eating habits. On the other hand, I don't want to push dieting on her. I've been trying to model good eating choices and emphasize health versus size. At the same time, getting on a scale and SEEING a difference or putting on pants and FEELING a difference can be very motivating. Another concern for me was any action I took to help her correct the behavior could cause problems with body image permanently. My mother has struggled with that her whole life, and I don't want to create that in my daughter. I have had a weight issue since my early twenties, but I am still pretty confident.
So, anyway, when all of these things are swirling in my head I read. I used to borrow books at the library or buy books at the bookstore, but now I read studies and forums online. :) Well, I found a lot of information. Turns out 30% of narcoleptics are obese. Studies done to determine the cause of the obesity can not find a link to medication nor caloric intake. It appears their endocrine system is affected. Hormones. Lovely. She's already struggling with the most hormonal time in your life.
Then, I found a name for what she's expereincing. Why is it that a label can make you feel not so alone and less freaky? NES: Nighttime Eating Disorder. Lightbulbs starting flashing around me. It is newly researched, but appears to be a type of compulsion similar to binge eating. It is hormonal. Different brain chemistry has been measured in connection with it, and, you guess it: commonly linked with Narcolepsy.
So, what to do? Still working on that. But knowing it's really not a choice, but more of a compulsion gives me direction to work with. I myself was diagnosed with depression and OCD, so I'm familiar with obsessions and compulsions and the high you feel when you eat to ease depression. I can teach her to use the same techniques I use when I am stressed and feel compulsions. It will be tricky though, because I'm asleep when she's suffering.
-Raising a Narcoleptic
Well, Narcoleptic here has been really struggling with her weight. We recently discovered she's been getting up and eating high-fat high carb snacks at night. This was initially a source of shame for her. I initially thought it was a choice and she was perhaps sneaking food because she was being limited during the day. Here I thought I was helping her, when in reality I was making her feel deprived so much that she was sneaking and lying to me about it. :(
We had a few heart to hearts and normally when this happens she makes the right choices. The night eating continued. She lied again about it. When confronted in a very gentle manner she cried and said she didn't want to disappoint me. OhMyGod, she's breaking my heart. So, after another heart to heart where I reassured her I just wanted to help her and that I understand, she felt better. I didn't though. I spent several hours researching last night trying to get some insight into how to handle this new development. On the one hand, her overall health is important and she's developing some bad eating habits. On the other hand, I don't want to push dieting on her. I've been trying to model good eating choices and emphasize health versus size. At the same time, getting on a scale and SEEING a difference or putting on pants and FEELING a difference can be very motivating. Another concern for me was any action I took to help her correct the behavior could cause problems with body image permanently. My mother has struggled with that her whole life, and I don't want to create that in my daughter. I have had a weight issue since my early twenties, but I am still pretty confident.
So, anyway, when all of these things are swirling in my head I read. I used to borrow books at the library or buy books at the bookstore, but now I read studies and forums online. :) Well, I found a lot of information. Turns out 30% of narcoleptics are obese. Studies done to determine the cause of the obesity can not find a link to medication nor caloric intake. It appears their endocrine system is affected. Hormones. Lovely. She's already struggling with the most hormonal time in your life.
"I am 30 years old and have suffered from Narcolepsy since I was about 11 or 12 years old. At the same time I started having symptoms of Narcolepsy(which I did not know about until 1997), I also started having the problem of waking up and eating in the middle of the night. I have tried everything to not eat, but I just get so hungry I can't sleep unless I eat. I have recently been researching The Noncturnal Eating Syndrome. Does anyone with Narcolepsy suffer from the same problem oris it just me, and if so what have you done to treat this problem. "
Then, I found a name for what she's expereincing. Why is it that a label can make you feel not so alone and less freaky? NES: Nighttime Eating Disorder. Lightbulbs starting flashing around me. It is newly researched, but appears to be a type of compulsion similar to binge eating. It is hormonal. Different brain chemistry has been measured in connection with it, and, you guess it: commonly linked with Narcolepsy.
"The majority of patients with narcolepsy experience a number of symptoms of eating disorders, with an irresistible craving for food and binge eating as the most prominent features. Eating disorder symptomatology interfered with daily activities. These findings justify more attention for eating disorders in the treatment of patients with narcolepsy."
So, what to do? Still working on that. But knowing it's really not a choice, but more of a compulsion gives me direction to work with. I myself was diagnosed with depression and OCD, so I'm familiar with obsessions and compulsions and the high you feel when you eat to ease depression. I can teach her to use the same techniques I use when I am stressed and feel compulsions. It will be tricky though, because I'm asleep when she's suffering.
-Raising a Narcoleptic
Thursday, July 19, 2012
Moodiness
You know what's extra fun about living with a tween-narcoleptic? Mood swings! Crying, giggling, asleep, bouncing off the walls, hysterical, sobbing, talking nonstop. It's like an acting class over here every day! I'm sure all those living with tweens and teens experience this, but sleepiness and the meds certainly make it extra fun! :) Here's to my mantra:
"God, grant me the serenity to accept the things I cannot change,Courage to change the things I can,And wisdom to know the difference."
Wednesday, July 18, 2012
I fell asleep typing this!
Hi this is Narcoleptic here and I want to tell you about the emotional side of Narcolepsy. Narcolepsy has a extra detail, slow metabolism. (which I named in my first post). My metabolism has slowed down the organ that helps so I burn less calories. The reason why this is MY emotional side of Narcolepsy is because I cry a lot about how I feel I am f a t. My mom thought of putting me on a low carb/low sugar diet which has been pretty hard for me. And believe me I know everyone tells me, "You aren't fat, don't say that." But the problem is I AM A GIRL! I will always feel like this. Even if I didn't have Narcolepsy. Girls are just like that. It is what sometimes makes us so special.
P.S
I fell asleep typing this! LOL!
Tuesday, July 17, 2012
History
My daughter had trouble sleeping right from the start. She did not sleep for more than 20 minutes at a time for the first 7 months of her life. At 9 months old she was diagnosed with Transient hypogammaglobulinemia of infancy. when we tested her for food allergies. This is a temporary autoimmune disease affecting the immune system. After she was about two years old, she rarely had health problems and most of her vaccines were "taking". She developed within normal limits for all milestones with the exception of some extreme shyness that she outgrew by kindergarten.
In third grade her thyroid was tested because she was constantly cold and would fall asleep every single time we entered the car, even if we were only in in for a few minutes. She fell asleep incredibly fast and started complaining that she was getting up several times a night. Nothing amiss was found with her thyroid. In fourth grade she started nodding off in the afternoons. By the end of fourth grade she was frequently spending afternoons asleep in the nurses office. She also began to gain weight rapidly.
The summer before fifth grade she started falling asleep while eating and had a sleep study done in June. While at the first of three apointments, the doctor asked some standard questions and we were all surprised when she answered questions positively that were related to cataplexy. After the sleep study, we were not impressed with the doctor and requested a second opinion. We were sent to see a neurologist, who ordered a sleep deprived MRI. Boy, was that hard! That doctor suggested we see his colleague in another city.
In fifth grade she began taking scheduled naps instead of participating in PE, art and music. By January we finally got an appointment with a doctor who prescribed Provigil and diagnosed her with narcolepsy. We noticed an immediate difference with the Provigil, however afternoons and evenings were still difficult. She began to experience obvious signs of cataplexy. She would have to hold onto something if she started laughing hard. She will sway standing up or sitting if she is tired and her eyes would roll back in her head. The rest of fifth grade she spent her afternoons attempting to stay awake and learned very little. Luckily, she's a bright girl and had understanding teachers who would encourage her to get water or take a walk. We also were frustrated to find that she had gained 60 pounds in 18 months.
Since May, she has been on a diet. She continues to swim daily, participate in cheer and dance several times a week and play outside with her brother and cousins. She has begun taking a class over the summer online so that she can attend school halftime this coming school year. She has increased her Provigil dose to 200mg a day and we are now considering a sleeping med to help with the disrupted sleep at night. The doctor has prescribed a stimulant for the afternoons, but we have been unable to find a pharmacy that carries it due to national shortages. We are still working on her recognizing, accepting and responding to her body. She is stubborn and tries to push through the attacks.
We are determined to find a way for her to be successful doing whatever she wants to do. We are so proud of her hard work and determination. Despite the past few difficult years, she remains on honor roll, has competed at the State Science Fair, and has participated in cheer and dance teams.
~Raising a Narcoleptic
In third grade her thyroid was tested because she was constantly cold and would fall asleep every single time we entered the car, even if we were only in in for a few minutes. She fell asleep incredibly fast and started complaining that she was getting up several times a night. Nothing amiss was found with her thyroid. In fourth grade she started nodding off in the afternoons. By the end of fourth grade she was frequently spending afternoons asleep in the nurses office. She also began to gain weight rapidly.
The summer before fifth grade she started falling asleep while eating and had a sleep study done in June. While at the first of three apointments, the doctor asked some standard questions and we were all surprised when she answered questions positively that were related to cataplexy. After the sleep study, we were not impressed with the doctor and requested a second opinion. We were sent to see a neurologist, who ordered a sleep deprived MRI. Boy, was that hard! That doctor suggested we see his colleague in another city.
In fifth grade she began taking scheduled naps instead of participating in PE, art and music. By January we finally got an appointment with a doctor who prescribed Provigil and diagnosed her with narcolepsy. We noticed an immediate difference with the Provigil, however afternoons and evenings were still difficult. She began to experience obvious signs of cataplexy. She would have to hold onto something if she started laughing hard. She will sway standing up or sitting if she is tired and her eyes would roll back in her head. The rest of fifth grade she spent her afternoons attempting to stay awake and learned very little. Luckily, she's a bright girl and had understanding teachers who would encourage her to get water or take a walk. We also were frustrated to find that she had gained 60 pounds in 18 months.
Since May, she has been on a diet. She continues to swim daily, participate in cheer and dance several times a week and play outside with her brother and cousins. She has begun taking a class over the summer online so that she can attend school halftime this coming school year. She has increased her Provigil dose to 200mg a day and we are now considering a sleeping med to help with the disrupted sleep at night. The doctor has prescribed a stimulant for the afternoons, but we have been unable to find a pharmacy that carries it due to national shortages. We are still working on her recognizing, accepting and responding to her body. She is stubborn and tries to push through the attacks.
We are determined to find a way for her to be successful doing whatever she wants to do. We are so proud of her hard work and determination. Despite the past few difficult years, she remains on honor roll, has competed at the State Science Fair, and has participated in cheer and dance teams.
~Raising a Narcoleptic
Sleeping beauty!
So here she is, taking a quick nap before we see a movie. She forgot to take her meds this morning and is off her schedule because it's summer.
~ Raising a Narcoleptic
~ Raising a Narcoleptic
Sunday, July 15, 2012
All About Me
I came to have narcolepsy when was about 9. I am 11 years old! For those of you who don't know what narcolepsy is:
Narcolepsy is a chronic neurological disorder that impairs the ability of the central nervous system to regulate sleep. It is the second leading cause of excessive daytime sleepiness 9after obstructive sleep apnea). It is a serious condition requiring medical treatment usually from a sleep disorders specialist.
People with narcolepsy experience excessive daytime sleepiness, and intermittent, uncontrollable episodes of falling asleep during the daytime. Someone who has narcolepsy is prone to falling alseep while engaged in conversation, driving, eating, or at other inappropriate times. The sleepiness occurs in spite of a full night's sleep and may persist throughout the day. Other narcolepsy symptoms include:
cataplexy - short lived intermittent muscle weakness
hypnagogic hallucinations - hallucinations while falling asleep or waking
sleep paralysis - paralysis while falling asleep or waking
distrubed nocturnal sleep - waking up repeatedly throughout the night
leg jerks, nightmares and restlessness
http://www.orlandosleep.com/disorders-narcolepsy.ht
I have cataplexy, disturbed nocturnal sleep and leg jerks, nightmares, and restlessness. With cataplexy if I laugh too hard I will experience weak muscles and have to sit down or I will feel I am about to collapse. I have experienced having to wake up a lot during the night. It bothers me and makes it difficult to sleep.
Narcolepsy is a difficult disorder to live with as a kid. We went to 3 doctors to find a doctor that gave me medicine that worked to help me a little. He works at Nemours. I am still struggling with it! Nacrolepsy has other things that are included besides falling asleep during the day. Narcolepsy also slows down your metabolism (which controls how fast your body converts food to energy).
Because of this, I am 137 pounds. If I tell my friends, they say I don't look like it at all. And I am on a diet which is hard for me when I see everyone else eating junky stuff and not gaining any weight. I feel discouraged everywhere I go when I see skinny people!
I also have to take a nap during my afternoon classes so I can stay awake for my other after school activities. I have to take Florida Virtual School so I can still pass my afternoon classes! If you want to do this, go to http://www.flvs.net/Pages/default.aspx
Did you know that only 50,000 people have been diagnosed with Narcolepsy in the United States? Please comment if you can relate to this.
Narcolepsy is a chronic neurological disorder that impairs the ability of the central nervous system to regulate sleep. It is the second leading cause of excessive daytime sleepiness 9after obstructive sleep apnea). It is a serious condition requiring medical treatment usually from a sleep disorders specialist.
People with narcolepsy experience excessive daytime sleepiness, and intermittent, uncontrollable episodes of falling asleep during the daytime. Someone who has narcolepsy is prone to falling alseep while engaged in conversation, driving, eating, or at other inappropriate times. The sleepiness occurs in spite of a full night's sleep and may persist throughout the day. Other narcolepsy symptoms include:
cataplexy - short lived intermittent muscle weakness
hypnagogic hallucinations - hallucinations while falling asleep or waking
sleep paralysis - paralysis while falling asleep or waking
distrubed nocturnal sleep - waking up repeatedly throughout the night
leg jerks, nightmares and restlessness
http://www.orlandosleep.com/disorders-narcolepsy.ht
I have cataplexy, disturbed nocturnal sleep and leg jerks, nightmares, and restlessness. With cataplexy if I laugh too hard I will experience weak muscles and have to sit down or I will feel I am about to collapse. I have experienced having to wake up a lot during the night. It bothers me and makes it difficult to sleep.
Narcolepsy is a difficult disorder to live with as a kid. We went to 3 doctors to find a doctor that gave me medicine that worked to help me a little. He works at Nemours. I am still struggling with it! Nacrolepsy has other things that are included besides falling asleep during the day. Narcolepsy also slows down your metabolism (which controls how fast your body converts food to energy).
Because of this, I am 137 pounds. If I tell my friends, they say I don't look like it at all. And I am on a diet which is hard for me when I see everyone else eating junky stuff and not gaining any weight. I feel discouraged everywhere I go when I see skinny people!
I also have to take a nap during my afternoon classes so I can stay awake for my other after school activities. I have to take Florida Virtual School so I can still pass my afternoon classes! If you want to do this, go to http://www.flvs.net/Pages/default.aspx
Did you know that only 50,000 people have been diagnosed with Narcolepsy in the United States? Please comment if you can relate to this.
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