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Messages By: creative6

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March 7, 2006, 11:02 pm CST

Narcolepsy

HI, if there is anyone out there who reads this i would love to hear back from you on this subject of Narcolepsy. My daughter is 14 years old and has been told she has Narcolepsy. We have been through 2 sleep studies and many doctors to confirm this. She also has the cataplexy. She has zero self esteem. Wishes she could did in a car accident because she see's NO hope for her future. It is so hard to hear her talk like this. It breaks my heart. She often speaks of just wanting to die, doesnt really have many friends, not even one close friend due to the fact that she cant stay awake to have someone over. She struggles to get thru school. Comes home and sleeps thru dinner, i have to wake her up so she can eat something and do her homework. Believe it or not inspite of this she works very hard at her grades and even got a 4.0 this last trimester. We have tried diff. meds and we cant find anything that she doesnt have a strong reaction to. Is there any advice to help her with someone who suffers with Narcolepsy? She wont laugh because she doesn't want to fall down in front of her classmates, she is always so sad.   I have called all over our state in Oregon to find support groups but we have none.   Thank you for your time    
 
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March 8, 2006, 11:01 am CST

Narcolepsy

My daughter has Narcolepsy with catalepsy. She is 14. We have tried meds and they have failed. Too many harsh side effects. We have been in counseling but she seems so hopeless about her life and future. She is afraid to laugh and has no close friends. She gets angry when we try to make her laugh because she feels we are doing it on purpose to see her fall down but its not true. I want to see her smile and laugh again. I dont know how to help her. Any advice would be great! I have looked and called around in Oregon for support groups and there are none!   

  

I cant stand hearing my daughter say she just wants to die. She says if she could kill herself and know she would still go to heaven she would. So maybe she will die in a car accident. She never buckles up either! I always have to say are you buckled? and she will say no. But then of course i make her. I want to help her but i just dont know how.  

  

Advice welcome!! 

 
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March 9, 2006, 10:25 pm CST

your son

Quote From: c_a_w_mom

It wasn't until he was about 4 months old we started to think there was a problem. He would sleep for 3 hours without a sound then it would start he would wake up every half hour for a half hour just screaming, we tried feeding him and that wasn't it we tried holding him didn't help, we gave him tylenol thinking he had pain somewhere, we gave him gripe water still no help tried orajel on his gums still nothing. We tried changing the way he slept and nothing, we tried swaddling that was the only thing that help. But it took 15 minutes to settle him down. Basically from the time he was 4 months till 11 months we tried everything we could think of. At every doctors appt. we told them about his issue. Finally after months of me running on anywhere form 45 minutes to 2 hours of sleep a night,   they finally sent him to a pediatrician who gave him a strong antihistimne to help keep him asleep.  All it did was lesson the amount of times he would get up. Then a 6 months after that they took him off of it. And where still doing the same fight after 3 hours he starts getting up, not every half hour now about every hour and it could be a down right fight to get him to stay in bed and sleep. He kicks, screams, crys, yells, throws everything, and we end up loosing our cool and making things worse.We called the pediatrician and told him this was still going on and  that it was affecting everyone in the house especially me. And he told me it wasn't a medical issue.  My parents take our kids 1 night a week only because he doesn't sleep and there not use to it. I now only sleep 3 hours a night at most and I'm constantley yelling and frustrated. My 10 yr old and husband get the most of it.  I need help with this now or else we're going to try and medicate him ourselves. We've already tried giving him gravol and it isn't helping and  there isn't a antihistimine on the shelves for kids that we haven't tried and there no good. I'm sick of being told theres nothing that can be done about this.  There has to be something. 

  

And before anyone asks about the routine its very strict 8 pm sitting on the couch for wind down time 830pm is story in bed then lights out and off to sleep he goes. 

  

Help us get some sleep 

PLEASE 

ca 

Have you thought about taking him to a sleep disorders clinic? 

  

You might find something there........ maybe he has sleep apena which causes him to wake up?  

 
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March 9, 2006, 10:33 pm CST

wow

I am acutally new to watching Dr. Phil, 

  

I am very shocked at how people treat each other in there own homes. I think about how many kids my kids go to school with who live with this type of pain daily. How can these parents expect anything but problems from there kids if they are to treat there kids so harshly and cruel. I feel very sorry for the kids of this family. I feel sorry for the kids of the parents with Bi Polar, for kids with parents who beat and hurt them in every which way and for those kids who's parents drinking are out of control. We are not perfect people but how can you expect your kids to turn out better then you if your own example is so lousy?  

  

I dont know how anyone could come out of that family and be emtionally healthy.  

  

  

 
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October 10, 2007, 9:22 pm CDT

10/12 Homecoming Shooting

I am very sorry to hear about what happened in Crandon. I lived there for 4 years and graduated from High school there. My husband is from this town, I am looking forward to seeing his brother on the Dr. Phil Show Deward Ison! He is a very wise and great man of this town. They are very blessed to have him and his wife Almeda for support . I pray that forgiveness and love will heal this town. I am so sorry for everyone and their pain.

 

 

Sharon Ison

 

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