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Acute Onset Of Narcolepsy 11 Year Old Boy


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#1 awake

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Posted 04 June 2008 - 08:05 AM

My 11 year old son was recently diagnosed with an acute onset of narcolepsy. It's been quite difficult. Throughout the diagnosis process (March & April 2008) he missed 3 weeks of school and missed many of his sports activities (tryouts, playoffs, etc). Currently, he takes Provigil in AM and at Noon and Prozac for the cataplexy. He's still only functioning at about 65% so his doc wants to change him to Xyrem. We are considering this drug. Are there other 11 year olds (or so) who have learned how to deal with narcolepsy on a daily basis.

#2 sleepylama

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Posted 04 June 2008 - 09:38 AM

Awake,
I am so sorry to hear your son has N. My son does not have N, I am the lucky one in my house with it, however he does have another chronic auto-immune disease called Ankylosing Spondylitis (AS for short) which has many pain and disabiling symptoms, but also carries a heavy fatigue and exhaustion to the point of sleeping a lot component. My son is 9 and started having symptoms at least as early as 4 years old.

I do not know the history of your family or if you have others w/disabilities already, but I wanted to chime in how we cope. We approach everything as a team. For example "mommy" might be the one physically with N, but we ALL emotionally have it and that goes for our AS as well. We are a family of 4 including a 5 year old son who is showing early AS signs. We don't keep things from each other for the most part. The kids know there are some decisions that are truly for adults only and we have had many discussions on respecting our role as the adults and their role as the kids in our "team". However, when it comes to treatment, daily functioning, and things of that nature, we work together to figure out what we all think is best and how we can all contribute to the team's success, which means sometimes "taking one for the team", in other words, we all make sacrifices for each other. Talking about when help is needed, physical or emotional, or just how to figure out how to achieve goals is a big in our house. We also talk about what is internal only and what is for everyone to know. Sometimes my son just isn't ready to discuss something w/people outside of our family yet and usually that is okay, the exception is always doctors.

My 9 year old plays competitive soccer which push him physically and mentally, but because we know how much soccer means to him, we all support him and help out. My younger son has just entered competitive soccer, so it will be a new dynamic for the comnig year. ;-)

We also have a health plan set up through our public school system. This plan allows for things like standing during class, and special chair (which we provided) at his desk, keeping a water bottle full for him and frequent bathroom breaks (he has a kidney issue due to AS), and extra time on tests on days where he is in pain or overly fatigued. This also exempts him from the max days of sick allowed during the year and grants a tutor if needed...thankfully he is an A student and LOVES school, so we have not needed any tutoring, but the sick day exemption was used in a previous year. If you attend public school in the US, you might want to call the health nurse and also do some research on how they can accommodate you. In our experience, they are familiar w/children needing help and setting up plans, nut allergies are really common ones we have seen w/other students.

The biggest thing I have found is trying to be a role model. Since I have N and AS, my health is out of whack in a serious way and I am on disability. So to be a role model on how to keep on living, I have found that keeping my word is the biggest thing. If I say I can and will do something, I honor my word, even if my health interfers and I have to ask for help, I keep my word. This also applies to saying I am unable to do something. So my son has learned that even w/a disability, you do everything you can do, but at the same time you learn to respect your own boundaries or the need for help.

...now all of this said, sometimes chaos still reigns at our house when new symptoms or other types of issues arise, but for the most part we are able to maintain a controlled chaos. ...my N is not yet controlled by meds, so my hubby is currently doing a great job of helping to control our chaos. ;-)

I wish you and your son the best and if there is anything I can answer for you, please let me know. Having a chronic illness myself is the pits, but having a child with one is worse emotionally, you never want your child to suffer from any illness, but even when I feel awful for my young man, I have confidence that he is growing into a good man that will not be worse for the wear. ;-)

#3 merrymom1013

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Posted 07 June 2008 - 06:15 PM

My daughter (now 15) was 10-11 when she developed obvious symptoms of narcolepsy/cataplexy. Her symptoms were complicated by some other debilitating health issues, so she isn't a great best case scenario role model. I've read about lots of kids who have done much better than my daughter. In general, learning to live with narcolepsy has been a long-term process. Early adolesence made getting the medications right a big challenge. Much of the adjustment involved a lot of work on my part- waking her up to give her her adderall & then trying again to get her up 30-45 minutes later. Monitoring her symptoms & response to changes in medication. For her, xyrem was a big help in controlling cataplexy & improving sleep quality, but didn't replace the other medications. As an 11-12 year old, her overnight sleep wasn't bad- that has since deteriorated. For the first year of so on xyrem, I set my alarm to get up & give her the second dose. (If your doctor is talking about xyrem for your son, have a discussion with the doctor & your son about things like sleep-overs, camp, parties & events where he will want to eat in the evening,etc. It helps to have a plan, because you son will still want to be a kid & do these things sometimes.) She wasn't always gracious or helpful at 12 & 13. All of that has improved greatly with a bit of maturity, and she is learning to advocate for herself. But life has never gotten back to pre-narcolepsy in terms of energy for her. She can't handle to busy schedule that most kids can. Most activities fell by the wayside because she was too tired. It's Saturday & she is vegging out in front of the tv instead of out with her friends- going to school all week wore her out. She told her friends she's grounded, because if she told them she was too sick or too tired, they wouldn't invite her to hang out next time. I don't mean to sound too pessimistic- she continues to be a bright, beautiful, funny kid - you adjust & life goes on. But it hasn't been as simple as taking a drug & a 20 minute nap & continuing with life as usual for her. Hopefully your son's journey will be much easier. But even if it isn't, be patient. Learn all you can so you can be the advocate your son needs. My daughter's neurologist told us, at her first appointment, that treatment for narcolepsy in puberty & early adolesence can be a challenge. He was right...of course 13 is not a great age for a lot of healthy kids either.

#4 Chuck Z.

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Posted 08 June 2008 - 07:56 AM

I hope that this question is not callas as I do not have children with narcolepsy. But the posts in this thread appear to point to kids with "acute onset". Tell me please, did your children recently have major surgeries? (Please go to my account and look at my posts, there is an informal poll set up for this question).

#5 sleepylama

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Posted 11 June 2008 - 12:19 PM

Chuck, My son doesn't have N, but he does have the auto-immune disease Ankylosing Spondylitis (AS), which is an HLA antigen related illness, b72 antigen specifically.

He has had 2 surgeries in his 9 years. One was at a year old, the next was at 4 years. His symptoms of his AS began sometime during his 4th year, but I cannot remember if they were before or after the surgery he had at 4.

My youngest son has had 2 surgeries as well, one at 6 months and one at 5 years. He has symptoms of AS, but they are not nearly as severe as my older son and simply monitored by our Rheumatologist at this point. His symptoms began at 4 years old.

I know you were specifically asking about kids w/N, but I figured I would give you this info just in case. =)

#6 merrymom1013

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Posted 17 June 2008 - 06:22 PM

Chuck, My daughter has not had major surgeries. What she did have was lyme disease that apparently triggered the narcolepsy, severe cataplexy & a host of other short and long term neurologic issues.

#7 caligirl

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Posted 02 July 2008 - 01:00 AM

Hello I was diagnosed with N about a year ago now and I am the age of 14 so i can possibly be of assistance to your dilema.i have come to a daily routine with my medications and i personally am very comfortable with it.i take provigil in the morning before school and xyrem at night to help me sleep.I am also very active as well so i know what its like to feel burned out at the end of the day.i am here if you ever have any questions. rolleyes.gif

best of luck,
caligirl



#8 alley

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Posted 12 May 2010 - 08:55 AM

My 11 year old son was recently diagnosed with an acute onset of narcolepsy. It's been quite difficult. Throughout the diagnosis process (March & April 2008) he missed 3 weeks of school and missed many of his sports activities (tryouts, playoffs, etc). Currently, he takes Provigil in AM and at Noon and Prozac for the cataplexy. He's still only functioning at about 65% so his doc wants to change him to Xyrem. We are considering this drug. Are there other 11 year olds (or so) who have learned how to deal with narcolepsy on a daily basis.



#9 alley

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Posted 12 May 2010 - 09:02 AM

Hi, I am new here but glad to find you. My son is 10 years old and was just diagnosed with narcolepsy w/cataplexy. We have not yet started meds but considering provigil or the newer form
neuvigil i think? We have been managing with regular naps thus far, which is becoming more difficult. He is now allowed to take a nap during school and have to come
up with a plan that they will follow while he is at school. We are have a follow up appt at childrens hospital of PA in 2 weeks to see if there are any other med options.

Has your son's cataplexy been controlled with med & how bad is the cataplexy? My son falls down with laughter and sometimes just a drop of the head and eyes drooping.

would appreciate any update you have re: meds too.
good luck
alley