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Paulkaz

My son Diagnosed with Narcolepsy

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Hello everyone,

MY 14 year old son was diagnosed with Narcolepsy and Cataplexy earlier this year. I must say he is handling it extrememly well, he has never said " why me", never complained, he is just dealing with it. When i he was diagnosed we contacted his junior high. They were great about it and had a 504 meeting, which is a meeting about disability and what they need to do for him to have everything he needs to learn. He was so upset, mainly because he did not want anyone to know. Now my question is, do i leave him alone about it, or try to get him to talk about it more? He will talk but not alot if that makes any sense. HE doesn't care who knows or how they react. I think it's normal but i wanted some extra input about it. Thanks

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I don't know if it is a typo because you said your son was upset that you had that meeting because he didn't want everyone to know; but then you said he doesn't care who knows.

Regardless, your son is 14 years old, which is an awkward age without having Narcolepsy added to his life. However, you could talk to your son and just let him listen, if he does not want to talk. He needs to understand that it is in his best interest that people like his teachers know of his disorder now, rather than get labeled later down the road as being lazy, stupid, or slow. I would imagine if his teachers knew the situation, they would be willing to work with him. Let your son read some of the messages that have been posted on this site so that he knows that many other people share his same disorder; young and younger at heart. Keep us posted on how his situation works out. :)

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That was a typo. In the beginning he was scared to death of other people knowing, he was 13 when he was diagnosed. Now he doesn't care who knows and i think he likes explaining N to other people and letting them know how it affects him. Sorry for the confusing typo.

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Hello,

It sounds like your son is lucky to have a supportive family and school. I wonder if he was upset because of worries about how classmates will react to a cataplectic or sleep episode. Did the school mention whether they had a plan in place to inform classmates about narcolepsy, and to instill tolerance? Is your son afraid that others will pick on him because of his symptoms? I am just raising this as a possibility. It is also possible that your son is fine, and just does not want to talk about his narcolepsy (teenage privacy thing).

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Thanks for the replies,

His school has been fantastic about it from the start. One of the teachers in the school has narcolepsy and that's a big plus. I don't push him to talk about it, i just tell him we are all here if he needs to talk and he is fine with that. I think the cataplexy bothers him more but the meds take care of that really well during his school day, it wears off at home after dinner usually. He hasn't said anything about being picked on, everyone i think has accepted it.

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I've gotten to this a tad late it seems :P but if he ever wants another person to talk with, I'm 19 and would be more than happy to chat with him. I missed a year of school (my would be junior year) thanks to when my N hit hard, and so through my experience in getting back into the swing of things I've really learned how to explain the disorder to others to help them understand the minute aspects of it. I think most of the people at my school now know about narcolepsy :P (even if it is less than 400 people :rolleyes:). Contact info is in my profile.

Chris"Toph4er"

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Im someone he can talk to aswell. I am also 14 so i think we could get on well. :lol:

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Are you in any support groups to support him, and or for information and resources? Let me know if you would like some and how old he is now (as some are for parents of people 16 years or younger!)

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