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12 Year Old Daughter Dx'd With Narcolepsy


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#1 ConnieMR

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Posted 26 March 2011 - 01:07 AM

My 12 year old daughter was just recently diagnosed with narcolepsy - a complete shock to us. We knew that she was sleepy, but never thought this was possible. Besides narcolepsy, she has anxiety and depression, Sinus Tachycaria (fast heart rate) and other mental health issues. Because of the dx of narcolepsy, the psychiatrist wants to take more time to diagnose her until she is more stable.

She was first put on Provigil, but had terrible bouts of nausea, even when taken with food. The sleep dr. consulted the pediatric cardiologist and she is now on Ritilan 2 times/day. We've seen no changes at all with this medication. She's either bouncing off the walls, angry, depressed or sleepy. There's no in between.

It saddens me to see my daughter like this. We see the sleep doctor this week and I'm hoping for answers soon.

#2 merrymom1013

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Posted 26 March 2011 - 09:42 AM

So sorry to hear about all your daughter is dealing with. Welcome to our 'parent club.' It can take awhile to get things sorted after diagnosis- finding the best treatment doesn't always happen right away. My daughter has been dealing with narcolepsy since she was 11 (she's now 18). Her doctor warned us (& was right)- puberty/ early adolescence make finding effective treatment all the more challenging. Hang in there & know we are happy to offer support & answer questions.

#3 ConnieMR

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Posted 29 March 2011 - 05:19 PM

So sorry to hear about all your daughter is dealing with. Welcome to our 'parent club.' It can take awhile to get things sorted after diagnosis- finding the best treatment doesn't always happen right away. My daughter has been dealing with narcolepsy since she was 11 (she's now 18). Her doctor warned us (& was right)- puberty/ early adolescence make finding effective treatment all the more challenging. Hang in there & know we are happy to offer support & answer questions.


Thank you merrymom1013. It's good to know that we're not alone. I know I'll have lots of questions! Our sleep doctor is amazing though and is always available for questions, but there's nothing like hearing things from people who are going through the same things or have gone through it.

#4 The Mom

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Posted 01 April 2011 - 12:27 PM

My 12 year old daughter was just recently diagnosed with narcolepsy - a complete shock to us. We knew that she was sleepy, but never thought this was possible. Besides narcolepsy, she has anxiety and depression, Sinus Tachycaria (fast heart rate) and other mental health issues. Because of the dx of narcolepsy, the psychiatrist wants to take more time to diagnose her until she is more stable.

She was first put on Provigil, but had terrible bouts of nausea, even when taken with food. The sleep dr. consulted the pediatric cardiologist and she is now on Ritilan 2 times/day. We've seen no changes at all with this medication. She's either bouncing off the walls, angry, depressed or sleepy. There's no in between.

It saddens me to see my daughter like this. We see the sleep doctor this week and I'm hoping for answers soon.

My 16 year old son has had GAD since he was 10 but was recently diagnosed with N. Luckily I write down all the different meds he has tried because I just couldn't remember them all. Many he had to stop because of the side effects. I am still in a little shock too about the N diagnosis. It is good in one way because it gives us a new direction to try to help my son. It is bad because N can be very disabling and I am uncertain what the future brings for him... college, jobs, etc. I am trying to spend some time now to educate myself about N. I was excited when I found this network and just joined this week.