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What Do I Do?


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#1 angelface03

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Posted 12 October 2012 - 10:17 AM

My daughter was diagnosed w/ Narcolepsy in March of this year. She is about to be 9 on the 2nd of next month. She is about 40 lbs over weight. The weight came on w/ in 1 month of the symptoms. She has been on stimulants for a while now, but has not lost any weight. She is very depressed about her weight gain. She made the comment that she hates not recognizing herself when she looks in the mirror. :( I want to try to get her to be active, and walk, ride her bike, and exercise on a regular basis, but she is so tired all of the time. We are unsure about cataplexy, if she has is, it is very mild. But she does complain saying she cant walk anymore. Does anyone have any suggestions?

#2 DeathRabbit

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Posted 12 October 2012 - 10:29 AM

My daughter was diagnosed w/ Narcolepsy in March of this year. She is about to be 9 on the 2nd of next month. She is about 40 lbs over weight. The weight came on w/ in 1 month of the symptoms. She has been on stimulants for a while now, but has not lost any weight. She is very depressed about her weight gain. She made the comment that she hates not recognizing herself when she looks in the mirror. :( I want to try to get her to be active, and walk, ride her bike, and exercise on a regular basis, but she is so tired all of the time. We are unsure about cataplexy, if she has is, it is very mild. But she does complain saying she cant walk anymore. Does anyone have any suggestions?

It may be a bit drastic, but you could try cutting off TV/internet service. I have no doubt that your daughter is suffering and constantly fatigued. But if there are no other options to pass the days by, it might be enough of a incentive to get her out of the house playing outside. I know how it is to struggle with weight and fatigue issues; believe me, it's a tough road. I have had to kick my own rear these past years to avoid becoming a permanent stain on the couch. For a kid her age, it's gotta be really rough and hard to understand. Other than that, I guess just monitor food intake and try not to keep stuff like sodas around, try to cut fast food out of the family diet. Growing up, I always found it easier to stomach restrictions on my diet my parents (I was overweight throughout childhood) would impose on me if they jumped in and did it as well. Let her know you guys are in it together. That's the most important thing of all. Feeling chronically ill can make you feel so alone. But if someone jumps down in the trenches with you, it's not so bad.

#3 Megssosleepy

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Posted 12 October 2012 - 03:08 PM

Poor thing, but at least she knows whats ailing her and thats step one. I would suggest doing stuff as a family as much as possible, I have more energy after a light snooze so maybe take weekend trips where you all can walk/hike/be active and she can nap in the car on the way there and back, I push myself harder if I am rewarded with a nap! lol Or you could try one of the game-systems where you play interactive games?

I have heard that for some staying away from gluten helps. A book I have at home says something about not having Carbs during the day, and eating healthy carbs in the evening. Because they make you sleepy. Make sure she is getting plenty of Vit. D and all the B vits, they help with energy as well! I also suggest staying away from whole milk, soda, and sugary juices, instead snack on veggies with low cal ranch, and then have fruit as treats! (if she isnt a picky eater)

I am guessing her thyroid was checked even before her N was DXed? Gaining that much in such a short time is a really scary thought are the Docs sure its the Narcolepsy that caused the weight gain?

I have heard of some support groups for children, maybe you have one in your area? It is very important that she feels loved and supported and maybe meeting some other kids may help?

As a parent remember when she was a toddler and missed her nap or was up to late... she prolly became a lil grumpy/cranky/out of sorts... Its the same now... not getting the right amount of sleep causes this for most PWN.

Myself, I am fine and dandy one day but the next I am sad and tired... its hard but with time and treatment I have come to understand that it's not me that's depressed its the N that causes me to be depressed, and that thought makes me feel better.

I would suggest also for you to read some post on here that interest you... you will get an idea of how she feels/will feel... maybe you can find some that you and her can read together, or even help her post! We are pretty good at supporting a new-bee let her ask questions and maybe if she hears the answers she will find hope that she will feel better!