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Tired, Sad, frustrated
by cd77 (no login)
My son was diagnosed in Sept 2011. Our world changed in April 2011. That is when everyone thought he was having seizures or possibly even a slight stroke. He was hospitalized twice and on second hospitalization is when narcolepsy cataplexy was mentioned by a psychiatrist. Since then things have seemed to get worse. He sleeps more, he is very angry and cranky.my son is not the same person. He has hallucinations and wakes up screaming periodically through the night swearing he just heard or seen something. He won't let me leave his side after that. He has been prescribed concerta. I hate the side effects. He speaks so fast and he complains of being hot. The nightmares and insomnia seem to be worse on this medication. I am told this is about the only option. I feel pressured to give him this medication because the school says it makes him focus and he is a much nicer person on it and doesn't nap as much. He didnt take it one day. Said it makes him to hot. Well school called n said they were fighting with him all day, making him wake up to perform his work at school. I feel helpless. I cant do much but give him a pill that could potentially harm him in the long run. School is a battle for him. Kids tease him. He has a strong hunger now almost ravishing and the kids were licking food and giving it to him and he would eat it. I said why are u eating the food the kids lick son!? He said cuz im so hungry and they laugh when I eat the food so im entertaining them. My son is also developmentally delayed. I was so angered by this but the school says that's just kids being lids and all kids tease n make fun. Long story short, my heart is broken. This isn't like what you see on tv, jokes are always made about this condition. It isn't funny. I dont understand why? Is it something I've done wrong? Why does my son have to have so many struggles? Someone asked about my son because they know we have seen alot of doctors and his condition..she said "im so blessed that my boys have always been healthy and have no health concerns" well if u are blessed than what am I? I love my son sooo much. Best thing in my life! He use to be so loving and funny and that has been taken. I do get glimpses of his former self and those are the good days. I feel lost, tired of hearing complaints from school, tired of seeing my son fight this, tired of docs, medications....he says "mom why do I want to sleep so much !" i dunno i just need help.