We are a small group of people that are suffering in silence. I want to suffer in silence no more! I shout out loud to all of you to reach out, and support each other! We dont have to be alone, and wonder what is happening to our child and what are we to do to help him. We need to support each other, so we can better support our children. It is so hard to find other parents willing to come out of the closet of darkness. I have met other parents, but they dont want to share and speak truth. I ask all of us parents to come out, and advocate for our children, who dont have a voice. I thank you.. gina
Hi Gina,
I think it's great that people can come to this site for support and remain anonymous.
Why do you think that parents are afraid to "come out of the closet of darkness" about this disease?
God Bless you for your crusade.
Hi Postive Vibes,
Thank you for your post. This is a devasting condition, especially when it happens to a child. That being said, we all have a choice. Do we sit back and let the condition take over our lives? Or do we make it into a pearl? My husband and I were devasted when our son fell ill. It took 3.5 years to dx him, and that was because we were obsessed with finding out what took over in his body.
I am choosing to make this intoa pearl. But I must tell you the journey to that decision was very hard. I had to go through a mourning.. The loss of the child that I gave birth to, and the choice to embrace the new child that he had become. I know people may think I am horriable for this truth, but inorder to help others heal, we all must be honest.
No one wants to admit these things. So they suffer in silence, and the pain builds up. We must come out of that process, and allow the healing to begin. It will only benefit our children, and help them embrace this new life with a postive, driven attuide.
Wow, you are so correct in dealing with this headon. It was only a few years ago that autism was kept in the darkness. Parents didn't talk about it, therefore denying themselves and their children the compassionate support that was all around them.
Is there a national organization yet?
God Bless
My daughter, 9, was just diagnosed with narcolepsy. It took us over 2 years to get this final diagnosis. Part of what took us so long is that she also gained alot of weight when this first started, and her pediatrician kept wanting us to see endocrinologists. She had a sleep study done, and had the blood test for the genetic marker and that's how we finally came to this diagnosis. I came across a study done on children with narcolepsy in 2010, which stated that 85% of the kids tested also had rapid weight gain associated. This, along with being tired alot and not able to join in some activities is hard for a child's esteem. She has been taking Adderall for @8 months now, and it has helped her with her weight as well as her tiredness. She usually needs one nap a day, so her case is not really that bad. The most difficulty I have is getting her to get up for school. She is VERY moody when she is tired. Waiting for her to wake up now, so we can have dinner together! :)
I would love to know what other parents of narcoleptic kids deal with. I have learned that I have to be very patient and adaptable. Any comments would be great!
Barb
Your daughter sounds exactly like my 9 year daughter. She is actually taking Ritalin to help her stay focus and alert at school. She startred taking the meds. over the summer. Now that school is in I don’t believe it’s working so much. I’m feeling really lost because school has been in now for two weeks and I get emails from the teacher daily telling me she has fell asleep several times that day. I don’t want her to fail or be left out, I only want what’s best for her. She is over weight as well but I accepted because I’m over weight but I didn’t understand why she was because she is a healthy eater. I have a 16yr. old child as well that is not over weight and he eats pretty bad. Do you think I should suggest the Adderall to her doctor?
Thanks,
Tracy
Hello, Hello!!!!
I am so glad you came, and told us your story! My name is Gina, and my son was dx at the age of 8. It took 2-3 years to dx him as well.
I have been yearning to talk with other parents for the past 3 years. It is hard to find parents willing to share their stories. I think they just shut down. I think we need to band together, and support each other.
Thank you, Gina
Gina,
What is a typical day for your son? Is he able to go to school? If he does, does the school work with you if he is late or needs to sleep?
Does he get moody and irritable when he is tired? Does he have cataplexy also? How has this made you alter your lifestyle?
Thanks,
Barb
Hello Barb,
I have thought long and hard about your questions. My family is on a journey, and the answers to these questions are a reflection of where we are now, or at least me.:)
My daughter had a life threatening illness in Oct. since then the stress triggered his narcolepsy out of control. He was no longer able to attend school. My family has had to relocate to be closer to both of their doctors. So our life is complicated by two children haveing a hard time right now. I will say though that his narcolepsy is more challenging in many ways. It is chronic long term.
I describe my son a a boy that is trapped in his own body. His mind is smart, caring, amazing. His body cant keep up.
I am working agressivley with the school to come up with a program, that will suit him, and help him thrive. I will tell you , that is not easy, and it is the fight of our lives. So, Monday he will start school from 9:30 -1:30. He has memory issues with his learning so he is 2-3 years behind other kids his age. Narcoleptics tend to have this, but we are also looking into this being a issue with medication. He will take naps, and have a structure eating plan. My son has gained 40 lbs this year, and eats constantly. I think he confuses the signal to sleep, drink for food. We are constantly addressing behavior. We need a team of people! I tried dealing with this myself, but i cant. He has cataplexy, and sugar is a big trigger.
To answer your question about how has it altered our life, I will tell you this... My daughter while she was clinging to life was asked what is the one thing you wuld change about your family... She said in that moment... My brother would not have narcolepsy. I think that gives you an idea.
But Barb... I have been bread for this. This is my purpose in life, to take care of my children, and get them functioning as well as God will's permits. we have a choice, and the choice is the rise above and live, and make this journey into a pearl. There are som many things good that have come out of this.... gina
How is your daughter?
barb,
I did not mean to scare you with my post. Dont be scared this is my experience. It does not mean your experience will be like mine. I am gratful for my experience because it has brought me to the place in my life that I am gratful for today.
This is life... some with narcolpesy go through hard time, some dont. I know it is a journey to accept.. I just wanted you to know I am sorry.
gina
Hi Gina,
Don't be sorry, when I read your post, I was a little overwhelmed, but was very sorry to hear of all that you all are dealing with.
We just came back from a church youth retreat this weekend, and the name of the topic this year was L.I.V.E., which means Living in View of Eternity. The speaker was really good, and spoke of how everyone goes through battles and pain in their lives here. I know that our Lord is the only way to give us strength and perserverance and hope while we go through these difficulties. I see that God is already at work in your family, and that is how you have such peace.
That is your testimony! Right now, with my daughter, I am trying to not be so rigid about things, and trying to let go of the control I want to have. It is VERY hard for me to think that it is ok for her to sleep in the mornings and be late for school. (I am such a rule follower).... I have to keep telling myself that this narcolepsy is real, and it's not that she is just being "lazy". I have to not worry what people might think . People that don't understand how this affects her. This is definately going to be a work in progress, and a journey, and I have to focus on our RELATIONSHIP instead of how I think things are SUPPOSED to be. Because for her I have to be adaptable, and allow time out for when she is tired and needs to rest.Thanks for sharing, and I will lift you all up in prayer!
Barb
My grown daughter has both Narcolepsy and Cataplexy (sp) and has 3 children. She has to take medication to keep her awake during the day. I had no idea this could happen to such young children! I wanted to thank you for these post on these conditions. It took a long time and a Nerologist to diognose her properly.
my child has also gotten narcolepsy and cataplexy following a life threatening illness in a family member and a concussion that my child got.
How do you know when to wake them up or keep them moving? Without the structure of school it seems to be getting worse.
KC55 How does your daughter cope? Did she have it in high school and college? How did she get thru it.
What about a job?
Thanks.
Hi Everyone
Did you end up meeting.
have a daughter who has n with c.
My son has N and he was diagnosed at 7 he is now 8. I am so tired of people assuming my son is lazy. I really need the support group!
Hello All,
I am the mother of a 16 yr old boy who was diagnosed July 2011, his case is a little different, I have seen changes in his mood, social life, school work.. It is sad and I feel helpless my son has always been very outgoing, great personality and an excellent student. A few years ago I started noticing changes in him and he himself said he felt horrible, always tired very out of it in his mind. I took him to his doctor and from hearing his symptoms he ordered a two day sleep study. They found that he doesn't sleep restfully at night and during the day he falls into REM sleep within 5 minutes of closing his eyes. We have been to three different doctors and all have different reccomendations from meds to gluten free diets. Just yesterday a new doctor put him on Ziram which he's hoping will allow him to get more restful sleep at night so that the day is more productive for him.. I am now leaning on therapy because he is having a hard time accepting that this will be with him for the rest of his life. I feel useless and frustrated, this is a horrible disorder..
Thanks for listening.
I have a 14 year old son who has stuggled with Narcolepsy for about 6 years now. Just recently He has been having mood swings, he gets angry alot, he doesnt want to hang out with his friends. He has always lived to play basketball but he isnt even interested in it anymore. We have tried effexor and provigil but neither treat all of his symptoms. They work at keeping him awake, but they never treat all of his symptoms....
Fayefeather,
Have you been told that this condition gets worse over time? One of the 4 doctors we've seen says there is no way to tell it could get worse or it could get better, it is different in each individual. Unfortunetly I've noticed it getting worse, I pray everyday it doesn't get worse, I worry about my sons future and how he will manage to function in the normal world. He did discover that sleeping in a cool, completely dark room helps him a little, we bought black out blinds and crank the air in his room. I'm not sure yet how the gluten free diet will work? I guess all we can do is try and hope someday a cure is discovered.
I AM SO EXCITED TO SEE SO MANY PARENTS COMING FORWARD!!!!! What a blessing this is. When I read your stories, it is as if I am writing them. We all feel the same, we just want to know what to do to help our babies. We must be fearless and determined to keep pressing forward. I am happy to report that our son is doing dramatically better then before! We are trying different methods of treatment that really seem to be working. If anyone would like to talk or needs support you can email me at [email protected]. I am not afriad to talk and tell my story. Everyone's story is different some better some worse. We just cant be afraid to listen to each other, and draw strength on our journey. No other parent will understand you like a fellow parent of a narcoleptic child. THANK YOU FOR YOUR RESPONSE, AND COURAGE!!!!!!
I WANT TO PUT THIS OUT TO ALL THE PARENTS AND ANYONE ELSE THAT NEEDS SUPPORT... I AM ESTABLISHING A SUPPORT GROUP FOR NARCOLPESY IN THE BAY AREA, CALIFORNIA... IF ANYONE IS INTERESTED PLEASE EMAIL ME.... [email protected] THANKS