9 replies to this topic

[Helpmyson]

I am looking for answers for my 8 year old son. About 7 months ago he started sleeping constantly throughout the day. We're talking ALLLLL day and then go to bed at night. He has always suffered from sleepwalking, nightmares, and headaches but now they seem more prominent. He gained 10 lbs in 2 months and his personality changed dramatically. He is short fused, angry, and always seems mad at the world. When he goes into his little "tantrums" there is no reasoning with him. He has had EEGs which are abnormal, MRI which was clear and a sleep study. The only thing the dr said about the sleep study was that he kicks his legs alot. (Im not completely sure if they were even looking at the possibility of Narcolepsy). When all of these symptoms started he also started holding his mouth open with his tongue forward all the time. And quite often has slurred speech. I read somewhere else on here that that could be cataplexy. Whenever he gets in the car he is passed out before we leave the driveway and he can fall asleep anywhere at anytime. He has slept through most of the doctor appts also. We started seeing a therapist and she suggested adhd and or some other type of behavior disorders but that would not explain the sleeping all the time. I read that N is often misdiagnosed in children and they are labeled with adhd or something else and it is clearly not the case. He falls asleep in school everyday atleast twice a day. Has any one else experienced any of the same stuff? We need help!!!!!!

[tdmom]

Oh the poor kid. Imagine being 8 and being fatigued and having all these unexplained things happening to you. Are you seeing a sleep specialist? I would ask to see a sleep specialist (preferably a pediatric neurologist who specializes in sleep) and see about getting him an MSLT. My son didn't have the tantrums but otherwise it sounds like him at 14. He was diagnosed at 15.

[sleepystarz]

What kind of doctor is your son seeing? I'm assuming a neurologist, since he has had an EEG. I'm not surprised you're having trouble getting a diagnosis, since narcolepsy isn't common at his young age. They'll want to look for other causes because narcolepsy is so unlikely. You said he has had a sleep study. Did this include a MLST? It sounds like he'd fall asleep quickly during an MLST since he falls asleep in the car and at inappropriate times like school and doctor appointments. The overnight sleep study is not used for diagnosing narcolepsy. If they didn't do the MLST (nap study), it's probably either because nobody was considering narcolepsy or because they did find abnormalities with his overnight sleep study, in which case, they address those problems before looking for narcolepsy, to avoid misdiagnosis. The restless legs, sleep walking, and nightmares are interrupting his sleep, and very well could be the cause of his sleepiness.

Since he's had an abnormal EEG, I'm sure the doctor is concerned about that and considering all of the possible causes (i.e. epilepsy, encephalitis). It's possible that there's an underlying medical cause (besides narcolepsy) that's causing his sleepiness. Of course it's important for the doctors to explore those possibilities fully. One thing you mentioned that concerns me is the headaches. Headaches aren't part of any sleep disorder. You can have coexisting headaches along with sleep disorders, but no sleep disorder explains the headaches. Slurred speech can occur with migraines, so that is a possibility. Epilepsy can also cause slurred speech (you don't need to have violent shaking seizures to have epilepsy, sometimes especially in kids, the only sign is a "dazed and confused" behavior, or staring off into space). I definitely think he's suffering from more than one disorder. There's no one diagnosis that can explain everything that's happening.

The fact that you were sent to a therapist is a "red light" for me. It means the doctors aren't taking this too seriously as a medical problem and thinking it's part of a mental disorder. I doubt that, based on what you've described. Sure, he's irritable, but anyone who's very very tired is irritable. Still, I'm sure his doctors want psychological problems ruled out. A psychiatrist would be more appropriate than a therapist, in my opinion, because they're trained to sort through medical problems that can cause behavioral problems. They have medical training and will know a little bit about sleep and neurological problems he may be having. In reality, pediatric neurologists deal mostly with epilepsy. Pediatric sleep specialists deal mostly with sleep apnea. You won't find a doctor who has had a lot of patients like your son. His problems aren't terribly common in the pediatric population. A psychiatrist won't be able to definitively diagnose any sleep or neurological disorders, but they can suspect them, point you in the right direction, and rule out psych disorders.

In my experience of my non-sleep related medical problems, it's best to get second and third opinions (or more), if a given doctor isn't taking you seriously. Doctors are stubborn and rarely change their minds. If they're dismissive in the beginning, they'll always be dismissive. If they seem to be going off on the wrong tangent from the beginning, they're not going to find their way back to reality. My advice is to move on. Find a new neurologist. Also, keep an open mind. He may not have narcolepsy, so don't be disappointed because nobody's diagnosing him with narcolepsy. Based on what you've described, I'm not 100% convinced that's what he has. It's possible, but if he does, he's also got some other neuro or sleep problems going on.

[TheParent]

I am looking for answers for my 8 year old son. About 7 months ago he started sleeping constantly throughout the day. We're talking ALLLLL day and then go to bed at night. He has always suffered from sleepwalking, nightmares, and headaches but now they seem more prominent. He gained 10 lbs in 2 months and his personality changed dramatically. He is short fused, angry, and always seems mad at the world. When he goes into his little "tantrums" there is no reasoning with him. He has had EEGs which are abnormal, MRI which was clear and a sleep study. The only thing the dr said about the sleep study was that he kicks his legs alot. (Im not completely sure if they were even looking at the possibility of Narcolepsy). When all of these symptoms started he also started holding his mouth open with his tongue forward all the time. And quite often has slurred speech. I read somewhere else on here that that could be cataplexy. Whenever he gets in the car he is passed out before we leave the driveway and he can fall asleep anywhere at anytime. He has slept through most of the doctor appts also. We started seeing a therapist and she suggested adhd and or some other type of behavior disorders but that would not explain the sleeping all the time. I read that N is often misdiagnosed in children and they are labeled with adhd or something else and it is clearly not the case. He falls asleep in school everyday atleast twice a day. Has any one else experienced any of the same stuff? We need help!!!!!!

My 9-year old son had very similar symptoms. It started 8 months ago. At first the doctors suspected eplepsy and encepalitis but now he is diagnosed with N. I suggest you ask yor doctor to do sleep study on him.

[Heidi L]

Look up Sydenham's Chorea. It's a common complication of strep A infection.
Narcolepsy and SC have many symptoms in common, and the onset of N is known to be associated with strep.
I have a lot of information on my website. I think you will find it helpful.
Heidi

[Lis]

wow, interesting! Definitely demand an mslt test if his overnight sleep study proves nothing. The MSLT (daytime sleep study that follows an overnight one) is the diagnostic test for Narcolepsy. Definitely red flag if doc's answer was to suggest counceling for all of this. If doc is not experienced with diagnosing and treating narcolepsy, please find a certified sleep specialist who is. Makes all the difference in the world. Best of luck, and please keep us posted.

[Helpmyson]

Ok so he has had an MSLT test and that showed signs of narcolepsy. Unfortunately his so called doctor told us that even though all signs point to narcolepsy he doesnt feel comfortable diagnosing him with it since he is only 8 years old. Doc told us to go see someone else. So now I have an appt at Childrens memorial hospital in chicago with the sleep director on feb 15th. UGH!!! Does this ever get easier?!?!?!?!?!

[Kim Kay]

I have narcolepsy and my onset was when I was 12. I would say that I get irritable when I can't sleep during the day and have mood swings, but I have a different thought on your son because of his "kicking" during sleep. My boyfriend has many of the symptoms you mentioned (moody for no reason, sleeping at inappropriate times, etc.) and I suggested he have a sleep test to see if he had narcolepsy like I do. His results also showed that he "kicked his legs a lot" and was diagnosed with Period Limb Movement Disorder.

Maybe look into PLMD... It would explain your son's mouth positioning and daytime sleepiness/irritability. It's treated with medication used for Parkinson's patients to calm the muscles down at bedtime so they get a good night's sleep. Hope this helps!

[motown narcolepsy]

I have Narcolepsy and i do kick my legs in my sleep and cataplexy is usually a part of narcolepsy. The fact that he sleeps all the time i would say is reason enough to take him for a sleep study. Just from my personal experience as a teen i was labeled lazy and told that teens typically sleep a lot. Teenagers do typically experience daytime sleepiness due to maturational increase which could be brought on by educational and social pressure. Personally i think he has narcolepsy and nobody seems to understand narcolepsy they think that you are lazy but thats not the case. I do understand what he is going through and i hope you do take him for a sleep study.

[Hank]

I have narcolepsy and my onset was when I was 12. I would say that I get irritable when I can't sleep during the day and have mood swings, but I have a different thought on your son because of his "kicking" during sleep. My boyfriend has many of the symptoms you mentioned (moody for no reason, sleeping at inappropriate times, etc.) and I suggested he have a sleep test to see if he had narcolepsy like I do. His results also showed that he "kicked his legs a lot" and was diagnosed with Period Limb Movement Disorder.

Maybe look into PLMD... It would explain your son's mouth positioning and daytime sleepiness/irritability. It's treated with medication used for Parkinson's patients to calm the muscles down at bedtime so they get a good night's sleep. Hope this helps!

I had been incorrectly diagnoses with PLMD prior to being correctly diagnosed with Narcolepsy with Cataplexy. PLMD is either a primary or secondary diagnosis. If it is a primary diagnosis, it is more common in the elderly. If it is a secondary diagnosis, it is common in end stage renal failure, severe anemia and Narcolepsy. Unfortunately, my neurologist stopped at this symptom and made it a diagnosis. When I went to a sleep medicine specialist, she scheduled me for MSLT. After starting Xyrem, the PLMD went away completely within a few nights. Children with PLMD tend to resist bedtime- children with Narcolepsy just sleep.