L Marie, I have only been told it will get worse as my son ages. I have never heard it could get better.. That would be a blessing. I do pray for a cure. I agree that a dark cool room does help my son get a better nights sleep.
Hi
My daughter just turned 7 years old and has been dx with Narcolpsey... She also has auditory processing disorder and a learning disability. This has been such a long year for the both of us!! I'm. Struggling with her being so young do I want to give her meds?? My concerns are she is so young what if the side affects are big as Narcolpsey ... I feel so guilty and wish I could take this illness on for her.. I just don't want to make any decisions that in the long run will cause more stress on her!!! It is my intentions that we wear this as a badge of honor.. But I'm not sure how to get there!! Is there support groups or meetings in Los Angeles Ca?? I feel so stuck on what or how to do this.. Im not sure if I'm just not searching correctly but there seems to be very minimal information..I'm open to hear other parents thought/experience. My daughter also has gained a lot of weight and is very moody! I have to beg her to do or go out the house!
For our children who are also dealing with moodiness and anger issues, wouldn't it be helpful if we could find therapists or a family councelor who truly understood narcolepsy? We had tried a few psychologists, but they don't understand that traditional therapy just won't work for us. The tiredness makes my daughter act like a completely different person at times. I have to say, though, that the summer has been a wonderful time for us. Not having to get her up for school had been GREAT!! Dreading the start of school in a couple of weeks, but the daily activity is good for her because she is too much of a couch potato at home.I also can't get her outside to play very much. Wishing there was a support group on the Eastern Shore of Maryland!
BTmom3 I agree with you. Right now we are working with a team of people that will help us advocate for our son in the school setting. The team includes , neuropschologist, occupational therepsit, speech therepist, and of course a lawyer that specializes in special educaiton law. It has been a humbling experience to be working with these profesionals.Their expertise and knowledge is very enlightening when it comes to understanding our son. They also are humble enough to seek that answers to the questions that they may not know. I started this converstaion because I think we as parents need each other, to help guide us through this journey. Another treatment that has helped us, is the input of a naturpath doctor,especially if the traditional approach is not working. Good luck to you!
BTmom3, how old is your child/what grade.
Mine is 14. moods are hard!!!! So much anger and frustration. some is possibly natural teenager and some narcolepsy I suspect.
Any ideas how to differentiate?
What treatment has the naturpath doing?
I am an OT myself. what has the OT helped your son with?
We are just deciding on meds and are also wondering if gluten free helps?
Look forward to hearing back from you.
Bentley
Hello Bentley, I am not sure if I am the one that you were addressing your questions to, but I will respond. If I was not the right person I did not mean to jump the gun...
My husband practices functional medicine, and I am a nurse that has had training in the functional approach. THere is a test that can test the neurotransmitters of the brain , and help guide a provider in knowing what medications may help your child. There is also another approach, which has helped our son and that is amino acid therepy. This approach however needs to be done along side a practioner that is well versed in this approach.
The OT is helping us because our son has had a rough year, and had some severe medication side effects, so OT eval is needed to help him get on his feet again. I am getting her results next week and will kepp you posted.
how old was your child when she started to show symptoms? I apperciate your input
Hi! My daughter was dx when she was 10 and it took 3 yrs to get that diagnosed. She too, had weight gain (40lbs)during that time. She is now 18, graduated HS and just finished her 1st year of college (living on campus. She has held summer jobs (daycare worker, office worker and an ice cream server) but only through her bravery. NONE of the employers or teachers understand or accept that she has a disorder. She is constantly falling asleep. However,
we have found that taking her medicine at the same time everyday, cutting out 'white' sugar, flour, rice and a some form of exercise (walking at least 20 minutes) helps her manage. She doesn't like being disciplined or the fact that she has this condition and it's a fight to get her to acknowledge it's affects. But like you all have said, we must fight for our children!
Hi there! It is an encouragement to me to read everyone's posts. Getting ready to get my daughter a 504 plan at school. Meeting with the guidance councelor soon. This should allow her to take a nap at school if she needs, be excused if she is tardy, and be able to make up any missed work. She has signed up for soccer this fall. We make sure she takes a nap right after school in hopes that she will feel up to going to practice. She woke up crying that she didn't want to go (to her last practice), but once she got there, she was glad she went. I hope she can continue. The excersise is good for her. Just a side note: we tried going gluten free and dairy free for about 5 months at one time, and we really did not notice any difference at all in her moods or tiredness. It is very challenging to stick with , and also expensive.
Through this illness, I am so happy to say that I love my daughter more than ever!! I can see her maturing, and trying to handle her moods better. I see her making some good decisions about when she needs to rest, instead of fighting it. and I see her apologizing if she has gotten "snippy" with me. (due to her being tired). Make a point to stop and give a hug, or take a moment to look your child in the eyes , and say, "It's going to be okay", when they are so irritable and moody. They're hearts really are hurting. tell them how much you love them.
Hi… I just finished the process getting my 16 yr old son approved for 504 plan with his high school in Santa Fe NM. His teachers have been great and help anyway they can to accomidate his needs. We have also found that the medication (ziram) has helped him to sleep deeply at night therefore helping him function better during the day. He has good and bad days but lately they seem more good than bad…
I will keep praying and help any way possible to make life as normal as possible for him.
Take care and stay strong.
Hello! I am new here and I read all the posts so far. I want to commend all you parents for advocating for your kids. I am 41 years old and I have narcolepsy/cataplexy. My first symptom around age 10-11 was sleep paralysis. As a teenager I napped a lot after school and slept long hours at night although I kept up with school, a part time job, and social activities. I had very slight cataplexy at the end of high school, although I did not know that what it was at the time. The excessive sleepiness started after my senior year. It took almost 15 years to get a diagnosis. I was already married with one small child! I had dropped out of college unable to stay awake even though I had been a great student all my life.
Anyways I have a few comments about some of the things you all are dealing with in regards to your kids. First the weight gain...sleepiness and sleep deprivation naturally trigger appetite. The brain thinks it is starved of energy so it produces hunger and craving. Also, narcoleptics burn calories at a much slower rate than healthy people. It's a catch-22 with us who have narcolepsy. We get tired and sleepy so we naturally crave to eat. So we eat but we don't burn it up. Plus when we eat it makes us sleepy! I don't know how this will help you help your kids with that problem. Just trying to help you understand how the narcoleptic feels. :)
Some advice I can give you is
1. Don't do everything for them. That victimizes them. Encourage them to find one thing they are good at and build on it.
2. Don't make them feel guilty for being tired! They are going to feel guilty enough all by themselves. Encourage them to get up and be active but when you see they can't keep it up let them rest. I know it's frustrating because we live in such a performance-based world. Let them know you love them and they are good enough for you even if they can't do all the things other people do.
3. Remember that no matter how difficult this is for you it is always even worse for them!
4. Don't let them get stuck on the pity-pot. It's natural and okay to feel sorry for yourself but don't let them get stuck there. Remind them-and live this out yourself!- that you always have a choice in how you react. Having narcolepsy can be a huge character-builder! I speak from experience! :)
5. Remember that it takes twice as much effort and time for a narcoleptic to do what a healthy person does. You stay awake for a couple days straight then live your normal everyday life and see how hard you have to work to do the simplest stuff!
6. Don't give up hope! It is very difficult to live with narcolepsy and it is going to be different than what you have envisioned for your life. This doesn't mean you can't find happiness and contentment and even success. But it's going to be at your level--not someone else's.
I am now a mom of 3 healthy kids, a 14 yr. old and 10 yr. old twins (yes that was VERY difficult but see--it CAN be done!) I am still happily married. I do work part time also. I have full blown cataplexy but I take 5mg Lexapro to control that. I have learned not to be ruled by my emotions so that helps a lot too. As we naturally mature we learn how to control ourselves so don't give up yet!
I have worked with children professionally in an area I know firsthand.
I am not a qualified doctor. I will be lead to where I need to go, now, with narcolepsy, but, bit by bit. As an adult, running a car into a pole is a huge SIGNAL. With my children, often as a single parent, I went bit by bit with them, praying for guidance. And it was really scarry, because I did not want to contribute to the problem in any way.
However, I followed with prayer and tears, and my kids are all great--not perfect. They are as I am, imperfect. As a professional, it scared me to see the drugs given to children, it upset me quite a bit. It also upset me when other parents wanted their children to come out like barbie dolls, plastic, takes good directions because she is not real, or he. It looks like a e.r. dx; i.e. give a drug to a child, rather than research what is the cause. Or, has this dx always been around. Or, is SIMPLY WHAT IT IS. JUST A CONDITION WHICH NEEDS TO BE ADDRESSED, BUT WITH CHILDREN, ARE DRUGS THE ANSWER.
This is simply what it is. Not to be judged in any way.
I wish I could finish my thoughts, but my eyes are hurting, and it is difficult to see.
You sound like wonderful parents to me, willing to go the length, and not expecting it to be easy.
What is?
My son is 8 yrs old and was Dx with Narcolepsy with Cataplexy 6 months ago. Hes symptoms started in Oct of 2011. He went from a very overactive little boy to a child we could hardly wake up. He started have these seizure like episodes also. He had every blood test possible with the only abnormality was a strept b titer. The did a sleep study and realized he wasn't sleeping good at night. So when they did the mid-day test he did four test and cancelled the 5th. I thought this was good. Come to find out it was not. They realized that he can reach REM 30-45 seconds. He is out in a minute. They did an ST and his results showed his Hypocretin level was a 23. After talking with his specialist and tons of other specialist they concluded that his condition was from a untreated Strept B infection. My heart sank. I racked my brain trying to figure out when he was sick and what I had done. His dr sat with me and explained that everyday people get strept and never even know it because their bodies fight it off. And for some reason he didn't fight and this is what damage it did before his body realized what was happening. But still this doesn't releive my guilt. As much as it broke my heart I went to dr after dr to say my child is not my child. And I felt worse for saying that. The child I gave birth to is not the child I have now. Our life has changed. His life has changed. He's currently taking stimulants which he became used to in 3 months and we have already increased it. He also takes Prozac which has halso been increased. We have been fortunate enough to have a school that works around his condition. But our lives are different. I'm just so thankful I found this group. To know we are not alone with this.
Quoted from research article: “Finally, people with HLA DQB10602 handle streptococcal infections differently than do those without HLA DQB10602.1,3 HLA DQB10602 is strongly associated with narcolepsy, and the associations mentioned previously were seen in cases and control subjects who were all positive for HLA DQB10602.”
I too was a healthy, active, very non-sleepy child. As an adult I have been able to ask my mom if she remembers me ever being really sick and she says no except one day–and I don’t remember this-- when I was 7-8 yrs. old I came in from playing outside (this is Iowa so that tells you it was sometime between april and october) and went in another room. After awhile when I didn’t come back out she came to check on me. I was sitting on the couch staring glazy-eyed straight ahead and wouldn’t answer her. She checked my temp and it topped the glass mercury oral thermometer so it was at least 105. She took me to the ER (2 miles away). They gave me a shot of Tylenol, waited for my temp to drop and sent me home. Otherwise when we had a virus or something in our house the doctors just said let it run its course so we did. I do not blame my mother for my disorder. There’s nothing she could have done to prevent it.
Although I know it’s a natural reaction you can’t feel guilty about this. Strep infections are common everyday stuff. My kids all had strep throat this summer. I didn’t realize that’s what it was until it was almost over so one child got antibiotics but the other two didn’t. It just ran its course. An interesting thing to note is that I NEVER get strep throat. Also, HLA DQB1*0602 is protective against Type 1 diabetes! Who knows, maybe narcolepsy research will produce a cure or prevention for strep or diabetes!
Don’t be discouraged. Narcolepsy has taught me patience, endurance, acceptance, hope and faith, and to better tolerate others. It has been a huge character builder. Just dealing with doctors who know NOTHING about narcolepsy teaches patience and endurance! Your child is blessed to have you to advocate for him. I never had anyone “stick up” for me. After several years of complaining to my family doctor about my exhaustion and suggesting to him that maybe I had narcolepsy he told me “I don’t really know anything about narcolepsy but I am sure you don’t have it.” I had to insist he refer to me to a neurologist, which he did reluctantly, but only after running a bunch of standard blood work ups, etc. which of course came back normal. And I could go on about doctors…uugghh…but I have found that people with narcolepsy are overall very intelligent, compassionate, generous people. We have to learn to manage a very invisible illness that is unrecognized by the public and poorly (if at all) understood by the medical community and has no cure, little long term effective treatment and is commonly mis-judged by people.
I would recommend referring to your child’s narcolepsy as a neurological disorder, which is what it is, rather than a sleep disorder. It’s also not a psychiatric disorder so don’t let people treat your child as if it were. Don’t get stuck for too long mourning the person your child used to be. Embrace your child as he is now–even as he is–because that is unconditional love. 
natnxn,
I thank you for your post. When I was reading it, I felt that you were telling my story. I empathize with you regarding your feeling of loss. I feel the same way and I have been battling this for a long time. I just recently decided to get some help to sort out my own feelings, because I know that it effects my sons narcolepsy. I am very interested in your post regarding strep B... Strep B is the bacteria that lives in the vagina, and when a women is pregnant they test her for that and give her antibiotics before delivery. Is this the same strain they found antibodies in your son? I will contiinue to hold you in my prayers and thank you for coming to our group.. gina
Paulsurinder1,
Gina,
I'm sorry I got that wrong. He tested positive for a strep B titer not an infection. There is 3 types if strep testing they do. The first is an ASO and it appears in the blood serum one week to one month after the onset of a strep infection. But after that it has a hard time picking the remnants of the infection. A strep B titer/ ADB, also detects antigens produced by group A strep but it is more sensitive and can pick up strep infections further back. It was a strep A infection but it was determined by a strep B titer. If that makes any sense. But for reasons unknown it attacked his hypocretin level. By far the worst part is his cataplexy attacks. I hurt for him. And if I could take it for myself so he could have his life back, I would. He has attacks with any shift in emotion. Laughter, fear, anger, nervousness all cause attacks with him. Depending how big the shift of emotion depends on how bad the attack is. Everyday & most of the day he has the lifeless eyes, head bobbing and working of the tongue. He also has many times a day weakness in his trunk and leg weakness causing him to drop to the ground. He also has had a number of episodes of full body paralysis where it looks like he went to sleep and he lands however he lands. I was told by his dr that even though he may look asleep he's aware of what is happening. It's like his trapped in his body until muscle control comes back. They longest has been about a minute. But it was the longer minute of my life. Right now he's going thru anger. He's mad at the world. And I can't fix it. I can't take his hurt or his anger away. He had a breakdown of the it's not fair. And he is right cause it's not. All I could do was hold him, love him and reassure him that when it gets to hard we will be here. But it's hard. He has an older brother and a yonder brother and don't understand why his different from them now. I just don't know what else to say. My heart shatters for him. Did ur son go thru this?
Natashia
natashia, thank you for sharing your most intimate emotions . if you would like to talk i am here for you. i believe that as parents of children with narcolepsy we need to support each other and help guide those that are new to this disorder with tools that may help... mt private email is [email protected] gina
Hello Parents!
I am new here, and I am so excited to be here. My daughter is about to be 9 on the 2nd of November. She was diagnosed in March w/ Narcolepsy. We were very lucky to have the diagnosis come quickly, as I have read that in other cases, the parents struggled for years before having a diagnosis. My daughter started symptoms in Jan, and diagnosed by a sleep study in March. We have been through several medications, trying to find the right one for her. I think we have found the right one to keep her awake through out the day, but she has a hard time eating. She has tremendous weight gain. She went from a size 8 to a 14 in a couple of months. I am trying to find some support for myself as a parent of a narcoleptic child, and for her. I am very glad to be here, and hope to connect w/ many other parents. We are feeling very alone, and confused about all of this, and would like some help. Thank you.
Angelface,
Welcome! I am so glad you are here with us. You are not alone, you are among a group of parents that understand your everyday struggles, and can offer tools to help you combat them. I look forward to your posts.. gina