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My Son Is Narcoleptic?


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#1 willsmom

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Posted 06 March 2011 - 05:15 PM

Hello everyone. This forum has been a real eye opener for me and it has given me a better idea of what my 7 year old son might be dealing with.

My son, Will, has never been able to go without naps. He is now in 1st grade and falls asleep in class nearly every day. The days he makes it through school, he falls asleep on the bus coming home. This has been a pattern since he started preschool at 3, but this year has been by far the worst. He can be walking across a room, and slump, he's asleep on the floor in mid-stride. Other times he is so hyper he is bouncing off the walls and unable to sit still. He was also breaking out into hives almost every day at school, and the allergist could find no allergies to cause it and referred Will to a psychiatrist who diagnosed him with anxiety and then ADHD based on his behavior at school when he wasn't asleep. His teachers and school counselor insists he has autism because of his poor social skills and self-stimulating behavior, so we took him to a specialist in the ASD field recommended by the psychiatrist and she tested him. She said he meets the criteria, but she said he doesn't quite fit the profile. She said based on the test results she would diagnose him as high functioning autistic, but her gut instinct was that something else was going on and she wants to retest him in 2 years. She was particularily concerned about his falling asleep, but she couldn't figure out why he was doing that.

Meanwhile we were pursuing the sleepiness again with his general practioner. He already had his tonsils and adnoids out back when he was 4, and while that helped some at the time, he was still sleepy. His iron levels had been tested before and came back fine at age 5 when they also tested him for lead. His doctor drew vials of blood and ran tests, then drew more vials of blood for more tests. The tests came back showing he has iron-deficiency anemia and lack of vitamin D. His docotor said that while those two things would cause lack of energy, they were not severe enough to cause the sleep episodes like he had been having, and she referred my son to a sleep specialist.

Our first appointment with the sleep specialist, my son fell asleep in her office. At that point she said that she felt we were dealing with narcolepsy and began to tell me what symptoms to look for. She also scheduled the overnight test followed by the napping test. She said that she believed the self-stimulating behaviors were Will's attempt to stay awake. She informed me that many of the behaviors that led to Will's diagnosis on the autism spectrum scale can also be side affects of narcolepsy in children his age.

I went home from that appointment and took everything I learned back to our family and we all started comparing notes on Will's behavior and watching his behavior more closely. We all knew that William has to sit down when he laughs really hard. He's done that since he was a toddler. He also tends to fall limply to the floor when he gets really angry. We thought he was just being obstinate, but when we observed him do the same thing during a tickle fight with his siblings when he was laughing and playing, it dawned on the whole family that what we thought of as Will's quirks could also be cataplexy. Suddenly the times his younger brother tackled him and Will wouldn't fight back took on a whole other meaning. Also all the times his jaw goes slack during an argument. It dawned on us that it wasn't that Will wouldn't fight back, he couldn't! So I asked him how he felt at these times when he got really angry or excited. He says it's like getting hit with a spell that knocks him back, but he can get up quick. Getting up quick is really important to him. The reason he jumps up and down in and flaps his arms sometimes is because "everything starts to get really weird" and that is how he "makes it stop". He says sometimes he sees things that he knows aren't really there at those times. He's not scared during the day. Wow! How is it I didn't know he felt that way before! I suspect it's because I didn't have the right information to make the connections before now.

Will's sleep studies did not go well. He could not cooperate and they weren't able to do anything but rule out sleep apnea, restless leg syndrome and a bunch of other sleep disorders. He did have one episode where his oxygen level dropped, but I'm not suprised. That goes with the territory when you are asthmatic. He would start to doze off in between the nap times, but during nap time he would fidget, grind his teeth, shake his head and whatever else he could thing of not go to sleep. He said he was afraid everthing would come alive on him. He was up for 3 hours during the night test. He slept all the way home (a 45 minute drive). His sleep specialist was hoping for at least 2 naps, but she didn't seem suprised that Will had trouble cooperating. She said children his age are hard to diagnose for that reason, and that we would treat him for narcolepsy. We will redo the sleep tests in a year. Will is not the first child his age she has seen with these symptoms and if I understand her correctly, they do test positive at some point in time, usually by the time they are teenagers. She is the one that referred me to this site. Currently she and the psychiatrist are discussing the best course of action and I should find out how we are going to proceed this week. We've been very lucky with Will's medical team. They are all willing to work together in his best interest.

Currently Will's school is not so accepting of the narcolepsy diagnosis. For a while they were calling me every day to pick Will up from school because he fell asleep. He was always awake by the time I got there. I finally told his teacher that she needs to make the most of the time he is awake, because it's not fair to send him home and deprive him of an education simply because he falls asleep a lot. Often Will has 9 or 10 pages of homework to do when he gets home from school because he fell asleep in class and he can't keep up. There isn't enough time between dinner and bedtime for him to finish it at home either. He has to do it over the weekend. He's holding his own in Math, but in language arts he is really having trouble. It's a bit harder for him and requires him to sit still longer.

Other issues Will deals with: He sometimes has night terrors. He has had them since he was a baby. He had a reaction to one of his asthma medications that caused major hallucinations last year (gave us all quite a scare). He has to have the light on in his room often because he will see figures moving around when he starts to fall asleep. Sometimes he gets up in the middle of the night to turn on all the lights. He can't stand loud noises or crowds because he says they make his ears and head hurt. He will not go on a playground that is full of kids, but he does well in groups of 2 or 3.

Will is a really smart and talented child. It would be wonderful for him to be able to stay awake and focus so that he can enjoy all the opportunities to learn and have fun that most kids take for granted. That is currently our goal, but I know it may take a lot of time and effort to find the right combination to work for him.

I am very glad to find a site like this. I know hearing about other children (and adults) with stories like Will's has really helped me get a grasp on what we are dealing with and I hope hearing Will's story may help someone else who is also searching for answers. My thanks for having a place that can happen.

Will's Mom

#2 kiragrace

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Posted 07 March 2011 - 12:06 AM

Hi, Will's mom, thanks for sharing your story. From what you said, it absolutely sounds like it will turn out that Will is, in fact, narcoleptic. I'm sorry for this, but glad that you found the right doctor familiar with children with narcolepsy and I hope he gets the treatment he needs. :)

#3 willsmom

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Posted 07 March 2011 - 11:17 AM

Hi, Will's mom, thanks for sharing your story. From what you said, it absolutely sounds like it will turn out that Will is, in fact, narcoleptic. I'm sorry for this, but glad that you found the right doctor familiar with children with narcolepsy and I hope he gets the treatment he needs. Posted Image



Thank you. There is relief in knowing what we are dealing with and that Will is not alone. His specialist says that having caught it young, he will have strategies in place to cope as he gets older and life becomes more challenging for him. He's a step ahead in the game. I'm hoping that if we stay positive and look at it as a challenge rather than a disability, that Will will stay positive and think that way too.

#4 merrymom1013

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Posted 07 March 2011 - 05:14 PM

I'm a mom of a college age daughter with narcolepsy who developed symptoms at age 10 & I have over 20 years experience determining eligibility for special education & developing IEPs & & 504 plans. You are lucky to have some good doctors & a tentative diagnosis. Will the doctor also help you get the accommodations Will needs at school by documenting that he is under her care for narcolepsy? The letter should say that his medical condition affects his ability to learn & function by: making him fall asleep during the day, causing self- stimming behaviors to help him stay awake, hyperactivity caused by excessive sleepiness, etc. The detail that connects his condition to the school problems the better. If the doctor & you can also suggest specific accommodations that address those problems even better. Example: a place to nap, reduced homework, key instruction at his most alert time of day, etc. Specific accommodations may vary with age, grade, & children, but some of the same strategies that work with ADHD can be a place to start for ideas.
Once you get the documentation, you want to communicate your request to the school in writing. Putting all of that communication in writing will help document & protect your son's rights to get services under federal law (504 or IDEA).
You didn't mention the treatment the doctor was recommending, but you may see things at school improve once his symptoms are treated. Getting the "right" treatment can be a work in progress, especially with a growing child, so be patient.
Narcolepsy Network has a pediatric advisory board that can provide you with some assistance if you aren't getting anywhere with the school.

#5 willsmom

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Posted 09 March 2011 - 03:18 PM

I'm a mom of a college age daughter with narcolepsy who developed symptoms at age 10 & I have over 20 years experience determining eligibility for special education & developing IEPs & & 504 plans. You are lucky to have some good doctors & a tentative diagnosis. Will the doctor also help you get the accommodations Will needs at school by documenting that he is under her care for narcolepsy? The letter should say that his medical condition affects his ability to learn & function by: making him fall asleep during the day, causing self- stimming behaviors to help him stay awake, hyperactivity caused by excessive sleepiness, etc. The detail that connects his condition to the school problems the better. If the doctor & you can also suggest specific accommodations that address those problems even better. Example: a place to nap, reduced homework, key instruction at his most alert time of day, etc. Specific accommodations may vary with age, grade, & children, but some of the same strategies that work with ADHD can be a place to start for ideas.
Once you get the documentation, you want to communicate your request to the school in writing. Putting all of that communication in writing will help document & protect your son's rights to get services under federal law (504 or IDEA).
You didn't mention the treatment the doctor was recommending, but you may see things at school improve once his symptoms are treated. Getting the "right" treatment can be a work in progress, especially with a growing child, so be patient.
Narcolepsy Network has a pediatric advisory board that can provide you with some assistance if you aren't getting anywhere with the school.



Thank you for all the information. I suspect I'll be going around and around with the school fairly soon. Will already has an IEP for speech and occupational therapy (for his inability to sit still and focus), but it does not have any of those accomodations. I have tried communicating with the school, in writing, what I have learned so far and mentioned that we would need to revisit Will's IEP once we have more information, but I get the feeling that they are ignoring me, so I will definately follow your suggestions and get the specialist involved.

The specialist would like Will on Provigil (?not sure of spelling), but she said we would probably have to try cheaper stimulants and fail with those before the insurance company will pay for it. The psychiatrist has some concerns about the stimulants because they tend to cause some anxious behavior and, of course, Will already has anxiety issues. I talked with the psychiatrist yesterday about the possibility that the cataplexy and "weird stuff" (Will's words) might be the reason for the anxiety. The psychiatrist thinks that may be a possibility, but we really don't know. He seems to feel a bit defensive and maybe a bit uncertain about the idea that Will may have narcolepsy. Maybe it's because he has narcoleptic patients and never thought that might be what is going on with Will, or perhaps he felt that I was upset with him because he hadn't suggested it, but I didn't know some of the other behaviors were important, and if I didn't mention them, it's not his fault. Maybe he feels we are still missing something. My husband and I both have a feeling we've only found part of the puzzle, too, but I think that maybe this is a BIG part of the puzzle. I did let him know that I hadn't mentioned some of Wills behavior because it was just "Will's quirks" and I didn't really think about it behyond that. He and the sleep specialist are still trying to figure out the best course of action, but they plan to have an answer for us by Thursday.

I finally sat down and had a long talk with Will about all of this. I've talked with him before, but not in a lot of detail. Will has been getting upset because he isn't able to be like the other kids at school. It is bothering him that he's having trouble focusing and that he's falling asleep. It's also bothering him that he can't sit still and he feels he has to self-stimulate to try and regain focus. He feels like a real "weirdo" and he says he's "trying really hard to make my brain work better and stop my body from doing this stuff". I let him know that he can't help it and that the specialist has a name for what he's dealing with and that if anyone at school says anything, he can tell them that it's narcolepsy and that he can't help it. I told him that he just has a brain that gives him wrong messages sometimes. Some brains have trouble with math, his has trouble with sleep. It seems telling him that he's not a "weirdo" has him opening up more about things that are happening to him. During our talk, Will told me something that has me a bit concerned. His teacher complained to me that Will sometimes gets very upset over transitions in the class room and will throw himself on the floor. Will's take is a bit different. He told me last night that sometimes he can't remember things that happened. He will start the school day and everything's okay, but then he wakes up and doesn't know how they got to that part of the day or what happened. He says it upsets him because he doesn't know what's going to happen in the future and then he's just there and he doesn't know how he got there. He says sometimes he gets so upset over it that his body gets weak and he falls. I don't know what to think of this. Does any one else have experience with this? Is this a symptom of narcolepsy?

Again, thanks for all the advice. I still feel overwhelmed by it all.

Will's mom

#6 sleepless sleeper

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Posted 09 March 2011 - 08:04 PM

willsmom, have you contacted stanford? i'm asking because of your comment stating how difficult it was for him when he had the sleep study. they are doing work with pwn kids if i remember correctly, or ... that's not how to put it. i'm not really sure how to say it because i spoke to someone there last week and i don't remember the words used. they were along the lines of narcolepsy and young children and learning more about it. here is a link to their contact page. there are a couple phone numbers listed, and i strongly encourage you to call and ask questions, which i know they will do their best to answer:

http://med.stanford....sy/contact.html

#7 merrymom1013

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Posted 09 March 2011 - 09:20 PM

Narcolepsy - especially pre-diagnosis & treatment was extremely anxiety provoking for my daughter. Imagine having no control over your body & no understanding of what's going on. Several doctors initially said my daughter was faking it or attention seeking & worse to her face; later I realized that she was afraid she was dying & no one could help, or that she was crazy. How could they not have anxiety & or depression? Post diagnosis, learning to live with a chronic condition is also high stress for them. Having narcolepsy may make the anxiety issues secondary, but it also increases the chances of having anxiety or depression for our kids. In time, you'll get sorted out the role you need the psychiatrist/ counselor/ sleep doctors to play.

#8 sleepless sleeper

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Posted 09 March 2011 - 10:56 PM

merrymom, that's so sad to read, but it also gives me hope. i've had n since i was little, and i didn't get a dx until just a few years ago. i went through my childhood years and young adulthood hearing what you describe has been said to your daughter. it had a devastating effect on me, but i am fine now. :) i think it is amazing to see so many more parents of pwn kids on here than were here just a year, year and a half ago. i hope this means that children are getting dx'd earlier in life, which i hope also means that these children will not go through all of their formative years being told such mean things. just the presence of parents on here shows that your children have your support, which is awesome.

#9 tdmom

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Posted 26 March 2011 - 09:19 AM

Will's mom what a story! Its so hard with kids because they develop coping behaviors that even they don't realize are coping behaviors, then those behaviors get treated and the circle begins.. Where is Will being treated? I definitely think your sleep specialist sounds like she is on the right track, I would work primarily with her and let her deal with the psychiatrist for a while. Is he on a lot of meds? If he is on non N meds I wonder if it would worthwhile over the summer to do a wash out, taper off what he is on and then just treat the Narcolepsy. Then see what behaviors are left and work on those? Maybe its all Narcolesy. Really, who wouldn't get anxious if they saw all the other kids in school on the playground and knew if they went and had fun like that they would fall? Who wouldn't do what they thought would keep them awake (self stimulating behaviors) if they thought that for once they might have the same amount of homework as their brothers if they could stay awake in school?

As to the school - they need to get on track with you. He needs a 504 plan NOW. My son is 15 and his school has been very helpful but it is difficult to get a teen ager on board with taking a nap or speaking out about needing more time. My son was just diagnosed in December so its a work in progress. I would suggest you start with a Drs letter to the school nurse about his diagnosis, his meds and then what other treatments they are ordering (ordering, not reccomending) Ask her if she needs any info and if you are a paying member tell her you will get some literature from here for her. My son is in a school of >2000 kids and he is the 1st one with a N diagnosis that they have! The school nurse should take on the responsibility of educationg the teachers but we all know that may not happen, it may fall to you. Write the teachers and tell them the dx and its implications. Tell them that you all have the same goal to educate Will and that will include helping him learn to control narcolepsy, not let it control him. Tell his teachers that you will all work together and ask to set up a meeting to discuss strategies to attain this goal. One teacher told me of a friend in grad school who had N who did crossword puzzles in class to stay awake! My son isn't quite ready for that though.

Let us know what is going on. With a newly diagnosed child myself I am eagar to hear what strategies others are using. We can all help each other.

#10 hizmom

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Posted 01 June 2011 - 10:31 PM

Hello Will's mom! Reading your story brought tears to my eyes when I got to your 3rd or 4th paragraph, when you mention how and when you finally found out about some of his symptoms, from him! It is so much like our story, my son is now 9. I will never forget the day, when he told me of his "seeing a small man at night", or of his "body stiff as a board". I couldnt figure out why he waited so long to mention it, as he said it happens EVERY night! I had been reading up on the symptoms of narcolepsy, but of course had not shared this info with him. He is also very hyperactive at times, and I now know it is his attempt to stay afloat, when his body and mind are trying to shut down. We use Zyrem/Provigil, one routine nap a day (sometimes two, if needed), and stay as active as possible, while sticking to a schedule. He is for the most part, back to his old self, since Zyrem. Our only problem is occasional bouts of over reacting when his is very tired and frustrated.

#11 hizmom

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Posted 01 June 2011 - 10:32 PM

Hello everyone. This forum has been a real eye opener for me and it has given me a better idea of what my 7 year old son might be dealing with.

My son, Will, has never been able to go without naps. He is now in 1st grade and falls asleep in class nearly every day. The days he makes it through school, he falls asleep on the bus coming home. This has been a pattern since he started preschool at 3, but this year has been by far the worst. He can be walking across a room, and slump, he's asleep on the floor in mid-stride. Other times he is so hyper he is bouncing off the walls and unable to sit still. He was also breaking out into hives almost every day at school, and the allergist could find no allergies to cause it and referred Will to a psychiatrist who diagnosed him with anxiety and then ADHD based on his behavior at school when he wasn't asleep. His teachers and school counselor insists he has autism because of his poor social skills and self-stimulating behavior, so we took him to a specialist in the ASD field recommended by the psychiatrist and she tested him. She said he meets the criteria, but she said he doesn't quite fit the profile. She said based on the test results she would diagnose him as high functioning autistic, but her gut instinct was that something else was going on and she wants to retest him in 2 years. She was particularily concerned about his falling asleep, but she couldn't figure out why he was doing that.

Meanwhile we were pursuing the sleepiness again with his general practioner. He already had his tonsils and adnoids out back when he was 4, and while that helped some at the time, he was still sleepy. His iron levels had been tested before and came back fine at age 5 when they also tested him for lead. His doctor drew vials of blood and ran tests, then drew more vials of blood for more tests. The tests came back showing he has iron-deficiency anemia and lack of vitamin D. His docotor said that while those two things would cause lack of energy, they were not severe enough to cause the sleep episodes like he had been having, and she referred my son to a sleep specialist.

Our first appointment with the sleep specialist, my son fell asleep in her office. At that point she said that she felt we were dealing with narcolepsy and began to tell me what symptoms to look for. She also scheduled the overnight test followed by the napping test. She said that she believed the self-stimulating behaviors were Will's attempt to stay awake. She informed me that many of the behaviors that led to Will's diagnosis on the autism spectrum scale can also be side affects of narcolepsy in children his age.

I went home from that appointment and took everything I learned back to our family and we all started comparing notes on Will's behavior and watching his behavior more closely. We all knew that William has to sit down when he laughs really hard. He's done that since he was a toddler. He also tends to fall limply to the floor when he gets really angry. We thought he was just being obstinate, but when we observed him do the same thing during a tickle fight with his siblings when he was laughing and playing, it dawned on the whole family that what we thought of as Will's quirks could also be cataplexy. Suddenly the times his younger brother tackled him and Will wouldn't fight back took on a whole other meaning. Also all the times his jaw goes slack during an argument. It dawned on us that it wasn't that Will wouldn't fight back, he couldn't! So I asked him how he felt at these times when he got really angry or excited. He says it's like getting hit with a spell that knocks him back, but he can get up quick. Getting up quick is really important to him. The reason he jumps up and down in and flaps his arms sometimes is because "everything starts to get really weird" and that is how he "makes it stop". He says sometimes he sees things that he knows aren't really there at those times. He's not scared during the day. Wow! How is it I didn't know he felt that way before! I suspect it's because I didn't have the right information to make the connections before now.

Will's sleep studies did not go well. He could not cooperate and they weren't able to do anything but rule out sleep apnea, restless leg syndrome and a bunch of other sleep disorders. He did have one episode where his oxygen level dropped, but I'm not suprised. That goes with the territory when you are asthmatic. He would start to doze off in between the nap times, but during nap time he would fidget, grind his teeth, shake his head and whatever else he could thing of not go to sleep. He said he was afraid everthing would come alive on him. He was up for 3 hours during the night test. He slept all the way home (a 45 minute drive). His sleep specialist was hoping for at least 2 naps, but she didn't seem suprised that Will had trouble cooperating. She said children his age are hard to diagnose for that reason, and that we would treat him for narcolepsy. We will redo the sleep tests in a year. Will is not the first child his age she has seen with these symptoms and if I understand her correctly, they do test positive at some point in time, usually by the time they are teenagers. She is the one that referred me to this site. Currently she and the psychiatrist are discussing the best course of action and I should find out how we are going to proceed this week. We've been very lucky with Will's medical team. They are all willing to work together in his best interest.

Currently Will's school is not so accepting of the narcolepsy diagnosis. For a while they were calling me every day to pick Will up from school because he fell asleep. He was always awake by the time I got there. I finally told his teacher that she needs to make the most of the time he is awake, because it's not fair to send him home and deprive him of an education simply because he falls asleep a lot. Often Will has 9 or 10 pages of homework to do when he gets home from school because he fell asleep in class and he can't keep up. There isn't enough time between dinner and bedtime for him to finish it at home either. He has to do it over the weekend. He's holding his own in Math, but in language arts he is really having trouble. It's a bit harder for him and requires him to sit still longer.

Other issues Will deals with: He sometimes has night terrors. He has had them since he was a baby. He had a reaction to one of his asthma medications that caused major hallucinations last year (gave us all quite a scare). He has to have the light on in his room often because he will see figures moving around when he starts to fall asleep. Sometimes he gets up in the middle of the night to turn on all the lights. He can't stand loud noises or crowds because he says they make his ears and head hurt. He will not go on a playground that is full of kids, but he does well in groups of 2 or 3.

Will is a really smart and talented child. It would be wonderful for him to be able to stay awake and focus so that he can enjoy all the opportunities to learn and have fun that most kids take for granted. That is currently our goal, but I know it may take a lot of time and effort to find the right combination to work for him.

I am very glad to find a site like this. I know hearing about other children (and adults) with stories like Will's has really helped me get a grasp on what we are dealing with and I hope hearing Will's story may help someone else who is also searching for answers. My thanks for having a place that can happen.

Will's Mom