My son Diagnosed with Narcolepsy
Posted 06 December 2007 - 12:14 PM
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
Posted 09 December 2007 - 03:14 AM
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.
Posted 10 December 2007 - 10:07 AM
Posted 10 December 2007 - 10:31 PM
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).
Posted 11 December 2007 - 02:18 PM
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.
Posted 10 April 2008 - 09:32 PM
Posted 15 April 2008 - 12:34 PM
Posted 17 April 2014 - 06:49 AM
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!)