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I Have N/c And 95% Sure My 10 Year Old Daughter Does Too


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#1 TiredNikki

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Posted 19 April 2011 - 12:49 PM

I am a 32 year old with Narcolepsy and Cetaplexy, only diagnosed in October of last year. I am on a xyrem-adderall regimin that seems to make my life easier. My issue now is, my daughters teacher just had her ears and eyes tested because, " the careless mistakes" she makes all of the time. Though, I have provided the teacher with the NN flyer for teachers at the beginning of the year. I went to the teacher after I heard about the test, cause I wasn't happy that no contact was made to me. We discussed with the principal and the reading instructor about Her symptoms of zoning out, not hearing things right, reading the directions then doing the whole paper wrong, that she seems out of it at times, always looks tired, and very accident prone. They suggested we all take the Connors scale, I said Narcolepsy mimics ADD, that is what I was diagnosed with when I was 25. I get those results today.

She also has never in her life slept through the night, has lots of nightmares, and her newest issue sleep paralasis. She woke up screaming about ten mins after going to bed, that there was something running around her room, and she said she tried screaming and nothing came out, and she actually used the words I was Paralized. I had that all the time as a kid, not anymore though. My dausghter is pretty much my clone, she is identical to me in every way, she is amazing. I'm pretty positive that she has N, I have seen those knees buckle when she laughs..... Beyond the guilt of passing this sleeping disease to her now is concern, how do we fix her, I see my Neuro tomorrow and I am going to request a study for her.

Do any of your children take xyrem? She is already so small, 61lbs at ten yrs old, wont stimulants and xyrem slow her growth more? Ive lost 40lbs on Xyrem in 5 months, I'm down to 118lbs, as low as I can go for my hight. Concerned Narcoleptic Mom

#2 merrymom1013

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Posted 19 April 2011 - 08:14 PM

My 18 yo daughter has been taking xyrem since she was 13 & it doesn't seem to have stunted her growth- she's almost 5'9." At the beginning of her illness she gained a lot of weight, which xyrem & adderall helped her drop, but her weight has been at a stable & healthy place for a number of years.
Good luck with getting your daughter the care she needs. Be glad you know what her symptoms might mean & how to get her the right care.

#3 ImSleepin

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Posted 25 April 2011 - 08:05 AM

My 18 yo daughter has been taking xyrem since she was 13 & it doesn't seem to have stunted her growth- she's almost 5'9." At the beginning of her illness she gained a lot of weight, which xyrem & adderall helped her drop, but her weight has been at a stable & healthy place for a number of years.
Good luck with getting your daughter the care she needs. Be glad you know what her symptoms might mean & how to get her the right care.

I wish I were 5'9 =P, and I wish I started Xyrem sooner than I did. I'm 22. I didn't start Xyrem until just after turning 22, but my neuro told me he thought I had narcolepsy when I was 20.

In high school I weighed almost nothing. I was 5'3 and about 105 lbs. I was active in sports and cheerleading. I definitely remember that when I got home feeling that sleep was more important that food, though even when I ate a lot I didn't gain any weight. I was also drinking those "Ensure" drinks to get my vitamins/minerals and extra calories. I gained about 5 or 10 lbs my senior year of high school when I wasn't active in sports as much anymore. One thing that really did it for me was all the antidepressants that I started taking when I graduated HS and turned 18. I gained a lot of weight after taking them, which made me feel even worse. I didn't end up scheduling my sleep study until I was 22, though :(

I found that after taking Xyrem that the weight started to drop pretty consistently and I'm back to my "normal" weight again. I think that part of the problem was the way that the antidepressants affected my liver. I ended up getting diagnosed with a fatty liver, and the liver is part of your metabolic system. Once that slowed down, losing the weight seemed impossible. Once a little bit of weight came off and my liver started functioning properly again, the weight melted off, which I am grateful for. Now, I've bought myself some of those Boost drinks that I can add as a snack to whatever I've already had for breakfast or lunch. I know my doctor was a little concerned since he had only seen me at my larger weight, so I wanted to get the extra calories to help maintain my weight -- just in case, and so that he wouldn't worry. I'm trying adderall right now (I find some of these meds give me terrible dry mouth, like Vyvanse which was overwhelming) and I've started topamax again for my headaches, so I don't want to risk losing anymore weight. The nice thing that I did find about adderall and Vyvanse is that I still have an appetite, and some days I feel like I could eat everything in sight! Ritalin definitely suppressed my appetite, making it difficult to eat during my regular lunch time at work. I would end up waiting until after work to eat, which was just too long.

#4 hizmom

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Posted 01 June 2011 - 09:36 PM

I am a 32 year old with Narcolepsy and Cetaplexy, only diagnosed in October of last year. I am on a xyrem-adderall regimin that seems to make my life easier. My issue now is, my daughters teacher just had her ears and eyes tested because, " the careless mistakes" she makes all of the time. Though, I have provided the teacher with the NN flyer for teachers at the beginning of the year. I went to the teacher after I heard about the test, cause I wasn't happy that no contact was made to me. We discussed with the principal and the reading instructor about Her symptoms of zoning out, not hearing things right, reading the directions then doing the whole paper wrong, that she seems out of it at times, always looks tired, and very accident prone. They suggested we all take the Connors scale, I said Narcolepsy mimics ADD, that is what I was diagnosed with when I was 25. I get those results today.

She also has never in her life slept through the night, has lots of nightmares, and her newest issue sleep paralasis. She woke up screaming about ten mins after going to bed, that there was something running around her room, and she said she tried screaming and nothing came out, and she actually used the words I was Paralized. I had that all the time as a kid, not anymore though. My dausghter is pretty much my clone, she is identical to me in every way, she is amazing. I'm pretty positive that she has N, I have seen those knees buckle when she laughs..... Beyond the guilt of passing this sleeping disease to her now is concern, how do we fix her, I see my Neuro tomorrow and I am going to request a study for her.

Do any of your children take xyrem? She is already so small, 61lbs at ten yrs old, wont stimulants and xyrem slow her growth more? Ive lost 40lbs on Xyrem in 5 months, I'm down to 118lbs, as low as I can go for my hight. Concerned Narcoleptic Mom



#5 hizmom

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Posted 01 June 2011 - 09:46 PM

My 9 year old son was diagnosed with N/C less than a year ago, his symptoms started last year February. Or should I say they were exacerbated last year, after a bout with strep throat, because he also has always had night time sleep issues. We found out last April that he was having the hallucinations and paralysis, as he casually told me of a recurrent episode of a little man coming to his room nightly to tickle him, and him not being able to "catch" him, because his body would get "stiff as a board"! This was prior to his actual diagnosis, but I had already been reading tons of information, and my suspicions were confirmed.

He has been on Provigil for about 1 year, and added Zyrem about 8 months ago. The Zyrem gave us hope. He takes two doses each night and sleeps 3-4 hours on each dose. He awakens bright eyed and bushy tail, only to begin dozing about 3 hours later. He has continued taking Provigil, to assist with daytime sleepiness, and he takes a noon nap for half hour at school each day. Our school is working with us, although it has taken almost the entire school year to get things right. I was so dreading the thought of teaching a new teacher about narcolepsy, that we have decided to try homeschooling this coming year.

He is also very small, 60 lbs and 9 years old. Prior to the Zyrem, he gained 20 lbs in less than a year, and was looking like a different child. Once he started Zyrem, his weight slowly went back to his normal (thin for his height and age).



#6 TiredNikki

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Posted 31 August 2011 - 12:19 PM

My 9 year old son was diagnosed with N/C less than a year ago, his symptoms started last year February. Or should I say they were exacerbated last year, after a bout with strep throat, because he also has always had night time sleep issues. We found out last April that he was having the hallucinations and paralysis, as he casually told me of a recurrent episode of a little man coming to his room nightly to tickle him, and him not being able to "catch" him, because his body would get "stiff as a board"! This was prior to his actual diagnosis, but I had already been reading tons of information, and my suspicions were confirmed.

He has been on Provigil for about 1 year, and added Zyrem about 8 months ago. The Zyrem gave us hope. He takes two doses each night and sleeps 3-4 hours on each dose. He awakens bright eyed and bushy tail, only to begin dozing about 3 hours later. He has continued taking Provigil, to assist with daytime sleepiness, and he takes a noon nap for half hour at school each day. Our school is working with us, although it has taken almost the entire school year to get things right. I was so dreading the thought of teaching a new teacher about narcolepsy, that we have decided to try homeschooling this coming year.

He is also very small, 60 lbs and 9 years old. Prior to the Zyrem, he gained 20 lbs in less than a year, and was looking like a different child. Once he started Zyrem, his weight slowly went back to his normal (thin for his height and age).



Since my last post, my daughter was diagnosed with Narcolepsy w/Cataplexy. right now she is on Ritalin 10mg 2xs a day. that really seems to be helping with school. I also purchased N a funny disorder that's no laughing matter. After reading that I decided that was the best way to educate her teacher this year. So before school started I took it in to her, she was very open to reading it and to learn techiques to help her get through the year. The 20 min naps really do help to regenerize her and myself. She is allowed to go to the office to nap if she is zoning out. And to my dismay when I went to inform the school nurse, her daughter has narcolepsy so she knows what to do with my Lilli. Our Neuro is also going to wait on the xyrem for Lilli until her sleep is more disturbed. thanks for replying to me!