4 replies to this topic

[alley]

HI, I was replying to a post today and didn't realize it was 2 years old! Is there anyone out there that has young children with narcolepsy??? My son has recently
been dx and i am still exploring options. have not started meds yet but need to.
Also have a question re: progression. Once diagnosed is there a progression of the narcolepsy? It just seemed to "turn on" one day.
thanks

[Lisa Kato]

HI, I was replying to a post today and didn't realize it was 2 years old! Is there anyone out there that has young children with narcolepsy??? My son has recently
been dx and i am still exploring options. have not started meds yet but need to.
Also have a question re: progression. Once diagnosed is there a progression of the narcolepsy? It just seemed to "turn on" one day.
thanks

My son is 11. He does not have full blown N however he suffers from Sleep Paralysis with Hypnogogic Hallucinations. Started when he was 5. I was recently diagnosed with N and my first symptoms (as well as my mom's) were early onset sleep related like my sons. In my family there definately seems to be a progression of symptoms. The daytime sleepiness seems to be worse in teens and midlife. Maybe hormones complicate it for us?

[concernedmom]

My son was diagnosed 5 years ago when he was 10. I never heard of acute onset but it describes what happened exactly.
Scheduled naps in school never worked, because he did not want to leave the classroom. He started on Provigil, 100 mg twice a day- then up to 200mg twice a day. He also takes concerta for cataplexy. My son is now on Xyrem. It works very well , however be careful not to increase too quickly.
My son is now finishing his first year of high school. He is a good student, however my only concern is he has not time or energy for anything else. I don't think the N has gotten worse, but every time he goes through a growth spurt, medication has to be changed.

Our attitide is N is life-changing not life-threatening. He is 15, and as of now his dr. is not letting him get a driver's license. When we were having him tested, he showed the same symptoms as another family member that was later diagnosed with leukemia, so we were relieved, it could have been a lot worse.

I hope this helps. We have been very lucky with very cooperative doctors and teachers. I hope the same for you.
.

[Lisa Kato]

My son was diagnosed 5 years ago when he was 10. I never heard of acute onset but it describes what happened exactly.
Scheduled naps in school never worked, because he did not want to leave the classroom. He started on Provigil, 100 mg twice a day- then up to 200mg twice a day. He also takes concerta for cataplexy. My son is now on Xyrem. It works very well , however be careful not to increase too quickly.
My son is now finishing his first year of high school. He is a good student, however my only concern is he has not time or energy for anything else. I don't think the N has gotten worse, but every time he goes through a growth spurt, medication has to be changed.

Our attitide is N is life-changing not life-threatening. He is 15, and as of now his dr. is not letting him get a driver's license. When we were having him tested, he showed the same symptoms as another family member that was later diagnosed with leukemia, so we were relieved, it could have been a lot worse.

I hope this helps. We have been very lucky with very cooperative doctors and teachers. I hope the same for you.
.

Great attitude. I am hoping/praying my son does not develope ESD like mum and I, but at least we will know what is going on and how to treat it. I went undiagnosed for 33 yeaRS and my mom was never diagnosed

[paulie]

HI, I was replying to a post today and didn't realize it was 2 years old! Is there anyone out there that has young children with narcolepsy??? My son has recently
been dx and i am still exploring options. have not started meds yet but need to.
Also have a question re: progression. Once diagnosed is there a progression of the narcolepsy? It just seemed to "turn on" one day.
thanks

hello, i it is so nice to find someone that has a 10 year old boy too.... my son first became sympotomatic at the age of 6, he is ten now.... he's was a slow progression took four years to fully manifest itself.... any questions or perhaps we can share our journey