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April 12th, 2011
02:03 PM ET
Teen 'sleeping sickness' is bizarre, rareLisa Shives, M.D., is the founder of Northshore Sleep Medicine in Evanston, Illinois. She blogs on Tuesdays on The Chart. Read more from her at Dr. Lisa Shives’ Sleep Better Blog.
Kleine-Levin syndrome is marked by recurrent periods of excessive sleepiness during which the patient can sleep for 24-48 hours, getting up only to urinate and often to eat. In fact, other than hypersomnia, that is, the excessive sleepiness with long sleep times, this disorder is characterized by compulsive eating, called megaphagia, hypersexuality, and almost all patients have cognitive and mood dysfunction. In 2005, Dr. Isabelle Arnulf published a large case series of the 186 known cases worldwide. The first known report of the disorder was more than 150 years ago. We do not know what causes it, but approximately half of the reported cases were preceded by a mild infection such as a cold or gastroenteritis. It is postulated that the infection then triggers an autoimmune reaction. It usually presents during the teens or early 20s and it twice as common in males as in females. The excessive sleepiness lasts more than two days and less than four weeks and is intermixed with long intervals of normal alertness. The excessive sleepiness recurs at least once a year and is almost always accompanied cognitive dysfunction and irritability while the person is awake. The compulsive overeating and the hypersexuality were observed in only half the cases. The average course of the disease was eight years. There is no diagnostic test. Treatment with stimulants, anti-depressants and anti-seizure medications have all been disappointing. The good news is that this is quite rare, and if, like my patient, you have a teenager who is seems to sleeping all the time, the explanation probably lies elsewhere. Common causes of excessive sleepiness in teens or young adults: sleep deprivation, circadian rhythm disturbance such as delayed sleep phase syndrome, obstructive sleep apnea, restless legs syndrome, periodic limb movement disorder, narcolepsy, idiopathic hypersomnia and depression. The information contained on this page does not and is not intended to convey medical advice. CNN is not responsible for any actions or inaction on your part based on the information that is presented here. Please consult a physician or medical professional for personal medical advice or treatment. |
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Who wrote this sentence: "The good news is that this is quite rare, and if, like my patient, you have a teenager who is seems to sleeping all the time, the explanation probably lies elsewhere."?
This is becoming more and more prevalent in articles I read online. I'm no English major but I can't read further when I come across such a poorly written sentence.
Doesn't anyone check these articles before they are published?
Thanks for the observation Tom...I thought I was losing my mind. I, too, seem to come across many articles that were not written correctly and yet, I seem to be the only one that would notice at first glance. Maybe I care too much. Maybe I care too much that the quality of educated workers is going down.
nobudy aht cnn evar cheques the spellyng on ehnithing
Doctors are not known for their writing skills. Just look at their handwriting!
The bad news is that this is not quite rare, and if, like some readers of this article, you have a concern this is happening all the time, the explanation probably is elusive.
It isn't necessarily the Dr.'s fault. My Grandmother writes a column for her local newspaper, and we'll read over her submission and it will be fine with no errors. When the print comes out, the occasional clerical or grammatical mistake will show up which she didn't make.
Uneducated and or poorly educated buffoons. You have to wonder where middle or upper management's heads are at.
Do they ever read this dribble? Do they check? If the CEO were to read this article someone would be losing their job(s) and rightfully so. Time to go back to school or go back to McDonald's they are hiring.
Remember these word. Would you like Fry's with that?
Stop being such a nerd looser!
If you are looking for medical answers on CNN, just like me, you too might be a moron. If you have a teenager who sleeps too much, just like
I question her article! I had sleeping sickness while in the Marine Corps, at the time I was 19 could not stay awake even when standing. I was hospitalized for two weeks. Was caused by a mosquito bit while in Borneo. Was told extremely serious. After the hospital it never recurred.
What's wrong with being a nerd? Nerds make more money.
i hate grammer queens. F off, seriously
When I was 9 years old I had what many doctors at the time called "Sleeping Sickness". I would fall asleep for long periods and my mother found it difficult and finally impossible to wake me. She took me to the hospital where I was given a spinal tap and went into a coma for 4 weeks. When I awoke I came back very slowly, my mother had to teach me how to speak and walk again. Ultimately the cause was determined to be Encephalitis. BUT everyone still called it Sleeping Sickness. This was 1962 ... it doesn't seem that we've come very far based on this article.
to Chris-
'Would you like Fry's with that?" So..., is the Fry an owner of something? Nice way to critique an error when your grammar sucks as well.
I agree. It seems that almost every article contains errors of spelling or grammar. It really is becoming quite prevalent.
Well Tom,
My feeling, along with many other readers, I'm sure – is that people is not seems to proofreading too goodly and (perhaps) also the person in charge of editing suffered from a bout Kleine-Levin syndrome him/herself.
@Keith Rogers, most nerds are too busy to make money, because they spend too much time living in their moms basement playing wow and watching star wars.
I experienced many of the same symtoms described here during my senior year in high school in 1974. I had an upper respiratory infection, for which I sought tereatment, the week before classes started. Although the infection sypmtoms quickly resolved, for a two week period I did nothing other than sleep, eat, and visit the bathroom. After a few days, my physician presribed a couse of prednisone. However, it really didn't seem to do much.
Oh please... Are you an English major? I did my research on Dr. Shives and she is! That sentence could'nt be more perfect you jack a**. Read the article. If you have nothing positive to say then keep your mouth shut. I don't see any articles you wrote. Thank you very much.
The poor grammer on this site has always been an issue. The articles never seem to conclude well either. I don't want to give the writers too much credit but a friend of mine who writes for a local paper told me that her editor often adds mistakes to her articles.
Tom, it's unfortunate that you find the need to point out a single error in an otherwise well-written article. As it has already been pointed out, grammatical and spelling mistakes in articles are often not the fault of the primary authors.
Instead of frivolously pointing out harmless mistakes, I wish these forums were otherwise used for effective discussions about the matters stated in the article – in this case, a rare disorder about which Dr. Shives is trying to educate the public.
I am curious, since I was an English major, what do you find do objectionable about the sentence? There does seem to be a word missing. Anything else?
yes, I see the problems. It should either read "is sleeping all the time" or "seems to be sleeping all the time".
thanks for the pick up
this has been the best waste of my time has ever been, my grammar sucks, and so does my spelling but, know this spelling and grammar don't mean a damn thing, if the understanding is passed on, the grammer and spelling of a sentence would simply be a waste of time, if I can type this message twice as fast by ignoring the spelling rules and grammar of course included, then I would because my main goal is to just transfer my opinion, so if she did make a mistake so what I have two masters, and in all honesty I never once considered paying attention in english classes or any other classes with rules upon how to write.
Fascinating. I know somebody who exhibits these exact symptoms. Unfortunately for him, it's been going on for 20 years. I think it's combined with other factors such as depression and other mood disorders that he refuses to get treatment for.
When I first saw this article, I would have said that I might have that, but I never sleep for 48 hours. That is excessive. I know it's tough to get out of bed after a 12 hour rest period, but at least I eventually do it.
Yawn! Sounds like normal teen behavior to me.
That or they are smoking reefer on the sly.
I was once a teenager, and it was the only time in my life where i had low enough stress levels (no bills, mostly no girl stress, no money problems) that i could sleep like that, 12, 14 or even 16 hours. Those days are looooooonnngggg gone lol
Ohhhh you nailed it. The deep sleep you could get back when. And actually feel rested in the morning. The very things some of us pursue, women and money, do take their toll.
Had the opposite experience myself. As a child and teenager and 20's, I was always tired, could sleep 12 hours, but never ever felt rested or like I had a good night's sleep.
I was always groggy upon waking but didn't realize that wasn't normal.
In my 30's that has changed, and I finally feel normal when it's time to wake up.
I always thought having to force myself out of bed was normal, but I really don't think it is. Feeling like you've had a "good night's sleep," like you've experienced, is actually what's normal and healthy. I wish I had know that then.
I think adults assume their teens are normal teens when there could actually be a sleeping disorder or other imbalance.
A disorder that makes our youth sleep, eat, and hump?! Unthinkable! Jesus what "disease" will these HMOs make up to sell perscriptions next?
Cool! So, HMO's make money by spending it! AND they felt SO strongly about it, they went back in time 110 years before there WERE HMO's in a time machine to invent the disease!
What a fascinating universe you live in!
Dunderhead!
These people are clearly suffering from a disorder most people don't understand, and I really feel for them, because they have to not only suffer from feelings and/or behavior they can't control, but they also have to deal with people like you, who think it's a joke.
Tom, No. Proof readers and content editors have been eliminated from publishing, replaced with cheaper less experienced people and/or the technology most often employed to spell and grammar check isn't perfect. I agree with you. I become distracted by the errors, especially if they cause a need to re-read the statement. I am known to abandon reading information with these errors.
*I* have thrown away a "Duty Rooster", right in front of the manager that produced it, proclaiming it must be a forgery, as a manager would KNOW how to spell ROSTER.
He turned the most interesting shade of purple...
And yes, I kept my job.
sounds like they studied a bunch of potheads
@tim, you have no idea what you are talking about, narcolepsy is a very real sleeping disorder and when you or your loved one suffers with it then you understand how debilitating and devastating it can be. narcolepsy also comes with cataplexy even more debilitating than the sleepiness. google it you just might educate yourself before you start spewing your misinformation and sounding so ignorant about a very real and devastating condition for those who have to live with it everyday for the rest of their lives!!!!!! THEY ARE NOT POTHEADS!!!!!!!
He yelled at you using CAPS. Are you going to allow him to yell at you, in front of all of us?
Tom...I don't think online columnists have editors! And we wonder why kids are doing poorly in school. From what they see in the "real world" what they're learning isn't applicable.
Yes, actually, online columns do have editors–the website usually has an editor or two for it. However, editorial positions are being eliminated, and that (combined with a lack of understanding of what an editor does) means that "good enough" is often the standard. As an editor in the publishing industry for more than 16 years, it disturbs me to see grammar, punctuation, spelling and sentence structure/organization go down the tubes. I'm actually glad to read that it disturbs others, too. I'd hate to think that "good enough" is the new standard everywhere.
I can say that I had this, but I didn't have any of the problems that they listed. Lucky for me, my dad had already taught me to be headstrong and use every ounce of my will to get things done that need to be, like go to school. I don't remember if I was sick before I had this problem, and my dad said that he was familuar with it. So he left me be only because I still got myself up to go to school- but could bet I was sleep walking or as close to it as possible as I had a .25 mi walk to school; I still ate, but only once a day; I still took showers; and while moving from place to place, I was aware. My teachers didn't pay too much mind because they were already use to me sleeping in the class from time to time, and my grades didn't suffer from it (but then again, I already learned most of that stuff while I was homeschooled). For me it lasted almost the whole month. I was to the point that when I got up to use the bathroom, I would take a shower and eat in that duration. My dad said that he thinks that it is mostly due to mental stress, but could also be a bit hormonal/physiological. I was somewhere between 15 and 17 (almost a decade ago for me) when it happened, and I didn't feel bad during or after, but was glad to actually be awake. Never had I slept like that before or after. And normally I remember my dreams, or at least that I had dreamt, but all I remember was black (and the few times I was up).
I don't really see how this can pose as a problem. But it would be nice to be able to accurately diagnose (and make sure that the kid isn't bluffing it) so that if the person is suffering this, they can have a doctor's note. I know that the school wouldn't accept that I didn't come in to school because I have been sleeping all but 1 hour a day for the past several days.
As I said, I didn't have any of the symptoms mentioned, not even being irratable. I might have been put off with interacting or doing anything, but that was because I would rather sleep. I still put forth the effort and didn't show any aggression, but you could tell that I just wanted to lie down. No mood swings, wasn't depressed, didn't do anything I wouldn't do normally (other than sleep all the time), the only thing that I did was sleep. It was noticed that I wasn't faking it at all because I love to play on the computer and video games, but nope, sleep. Normally turning on the light or sprinkling water would wake me up, but nope, sleep. But if you did anything that might cause me harm in my sleep, I would remain asleep and kick your ass; quite accurrately might I add. Which brings me to my question: how do you beat somebody up that you can't get a good hold on to break anything and is already asleep?
My daughter is the same way but thank god I did not give up till doctors gave me answer. I fought schools and took her to specialist at the leading hospitals to learn of the conditioning causing the problem. She also has a condition called WPS of her heart cause from plan strip-throat. Luckly she will out grown the heart condition by 30yrs old but her siezures and chronic fatigue will only get worst over time. I understand she is the sweetest young girl a wake but if you wake her up when she needs sleep like that she will fight you. (Verbal and Physically)
My youngest daughter suffers from chronic fatigue syndrome as a result of her seizure disorder. This young lady now 24yrs old can sleep for 48 to 72 hours straight. She will not even get to go to bathroom unless I physically force her too. I do this because if she sleeps that long she will suffer from kidney problems afterwards. Boy when you do wake her up you better be ready for one anger girl who does not even remember anything she might say or do when her body has not gotten the sleep it thinks it needs.
Don't assume she'll get worse. I slept a whole Summer away as a teen, then my daughter slept half her junior year. I am happy, healthy and have a Ph.D. now, and my daughter runs half marathons and is headed to medical school next year. I still needed ten hours sleep at 30, now at 45 six hours is plenty, and my daughter who is 25 is down to about eight hours sleep a night and fine. I know I did 48 hour spells with one trip to the bathroom easily ten times that Summer. Doctors couldnt find anything wrong. I was happy awake, worked part time, hung out with friends, etc... Same with my daughter. We both have horrible allergies and so I think something autoimmune contriibuted to it.
They're not sleeping for 24-48 hours a day, it's just that you THINK that's how much they're sleeping. Come on peeps, you know your kids are playin Nintendo when you're not lookin!
Will not when they are in sleep study in hospital under 24hr camera survelliances. She has been there more than one for 7 days at a time.
So, this disease turns you into an average cat? Weird.
my son marc ramos is 16 n we know that teens sleeps alot but it worries me when he is in adad moon or angry most of the time he doesnt do homewrk cus he says his tired all times n sleeps all day his a house kid n dont give me know problems. i hope he doent have sleeping sickness cus i also sleep alot n cant control it most of the time . its so frustrating.
You should not post your real name or son's real name on the Internet. It is better to just use first names or a made-up name.
Also, please talk to your doctor. It sounds like a circadian rhythm disorder might run in your family. Make sure your son knows it's important to go to bed at the same time every night (10:00 pm for example) and avoid using computers, video games, TV, or an MP3 player, etc. for 2 hours prior to bedtime. Just read, do homework, etc. for the last few hours before bed, and try to stay out in the sunshine for at least a short while every day. Have your Vitamin D levels checked. Be sure you are both drinking plenty of water all day and not excessive amounts of caffeine. I hope you find a solution and wish you both well.
my son marc ramos is 16 n we know that teens sleeps alot but it worries me when he is in abad moon or angry most of the time he doesnt do homewrk cus he says his tired all times n sleeps all day his a house kid n dont give me know problems. i hope he doent have sleeping sickness cus i also sleep alot n cant control it most of the time . its so frustrating.
Wow, what a surprise. Teens now get a disorder that forces them to get the sleep their bodies so desperately need. It has been medically proven that teenagers need as much sleep as a newborn and yet high school starts earlier and goes longer than any other subset of schooling. After 8+ hours of school (mine was 7:00am to 3pm) most students have after school activities (sports, band, etc) at least 3 days a week and on top of that several hours of homework (5+ hours if you are in advanced courses) and then studying, church activities, etc its a wonder teens have time to sleep at all! I know I was lucky to get 6 hours of sleep when I was in high school and that resulted in a lot of sleeping while standing/sitting/driving and panic attacks. I would highly recommend any parents of teenagers let them take it easy until college. I thought I would be ahead of the game by working so hard in high school but all it did was burn me out for college. I didn't want to do a darn thing but sleep and hang out with friends when I finally left home and that is not what you want your child to be doing when they are starting out life on their own. If I could do it over I would take honors classes in high school and work hard at college. High school only matters for your GPA and easier classes are going to improve the GPA.
I agree, Anon. I was also burned out by high school and really really burned-out by the end of college. I wish I had had something left for grad school, but I would have had a nervous breakdown if I attempted it at the time. Meanwhile, many people who screwed around in high school are now more successful than I, because they weren't so exhausted by 18 and were able to enjoy and thrive in college. You just have to laugh, sometimes. :0
I know someone with this disease, he goes to sleep for usually 2-4 weeks once a year, and has absolutely no control over when it happens. The only pattern they've found is that he's usually undergone something very stressful before falling "asleep", like meeting his girlfriends parents for the first time. Bizarre
Hi
I'm coming for you...
Who cares?
i want this disorder
Quite a few anti-seizure medications cause drowsiness. No wonder they didn't help.
I bet the teenager is up all night texting and is therefore tired during the day....
wow ursosmart
Mike Hunt, don't you say a darn thang like that again. My great grandson had a disease like this when he was younger, and it affected his social status and grades. He started smoking and hanging out with the wrong crowds, which caused him to flunk out of school. Now he has 5 children with 5 different women, and smokes 2 packs a day. Whenever he comes to family reunions, he always has a cigarette in mouth, beer in hand, and a different woman by his side.
what a joke our medical system is, but there are doctors who will be more then happy to treat these people at $500 per session, and there will be drug companies who will be more then happy to give them drugs that will make them think they are better
there is a logical explanation for everything
Don't worry when you are grown up you will find
lot's of life's problems that will keep you awake at night.
I can assure you all this is real. My girlfriend exhibited all the symptoms of this disease in her early adolesence. According to her it was extremely frightening because no one knew why this was happening. There was a lot of concern about tumors and other reasons why it was occurning. It finally took a family friend who happened to see a late night news program talking about this condition to allow her family to bring this up to her doctor who was then able to diagnosis as this disease.
She's tried to describe the feeling to me and the best I can equate it to is a disassociation with reality, which when you are not expecting it can cause extreme anxiety and panic. She said before they finally figured out what it was it was always very scary. The sleeping was not fun either, it was usually interspersed with very real like nightmares. She assured me it was no fun sleeping so extensively and not being coherent. Your whole life is put on hold for weeks and this caused her to get behind in school. It was a very frustrating experience.
So please don't chalk this disease up to "typical lazy teenagers" it is a very disconcerting disease for the individuals diagnosed and the families.
@Cris – I was just thinking the very same thing.
@Chris – Perhaps it's best to refrain from critiquing the education of a journalist (who clearly is fairing just fine as a published author on CNN), when you're lacking some very basic grammar skills... Also, why knock employees of McDonald's? There isn't anything wrong with trying to work hard and earn an honest living. Do you think that you're better than them in some way? Evidently, grammar skills aren't the only thing that you're lacking.
What a waste of time. Teenage years is the best time for spiritual discipline, to acquire basic knowledge in various fields, to learn foreign languages and to master musical instruments. Youth in rich countries are sick one way or another. They should be thankful for lenient governments and for being able to go to school.
Yes! 150 YEARS AGO, government was SO lenient, they permitted slacking off by sleeping for TWO OR THREE DAYS. Yep! THAT IS THE TICKET!
The United States was RICH 150 years ago! That is WHY we got labor unions!
LET THEM LEARN IN THEIR SLEEP, THOSE LAZY CHILDREN!
You idiot!
Learn about FACTS, rather than blathering out idiocy! Or do YOU claim that YOU KNOW MORE THAN THOUSANDS OF PHYSICIANS? YOU know MORE than someone who spent 8 years in medical education?!
And THAT is why YOU make a quarter million a year, right?
No, that is why you mop the floor, while people who DO have educations make more.
Lot's of teens – going through a major physical 'growth spurt' – will go through a phase of sleeping many hours of the day and night and eating ravenously the few hours they are awake. It's normal and isn't an exotic disease or sign of moral depravity. Preferably, this happens during the summer.
Frank, there is a substantial difference between sleeping 10-12 hours and sleeping TWO ENTIRE DAYS AND NIGHTS.
THAT is a sign of a disease.
Catch a disease like that EARLY and figure out a treatment (perhaps auto-immune, in some cases), control or even cure it. Ignore it, leave the kid with lifelong problems.
When my teenager began sleeping more than usual (and usual is quite a bit!), it was mono. I suspect that's a more like diagnosis for a sleepy teen than this disorder.
"more likely", that is. I'm on the lam with the Grammar Police hot on my tail.
you are right Anne
@Tim and Alienmoose, I totally agree. However, it is definitely real. I went through it long before I ever smoked pot, which I no longer do. I thought it was caused by growing and being hormonal and I still think that.. I also don't think the study was about kids with pre existing conditions such as seizure disorders that cause narcolepsy, which is much more serious than 'the sleeping disease'. They're talking about kids like my daughter and I who are very healthy and active most of the time.
When I was a teenager, I slept so much that when I wanted to lose weight, I went to sleep whenever I got hungry (I lost about 30 pounds and kept it off.) When I could, I slept at least 12 hours per night, many times, more. I am 60 years old now, still sleep well, but only 7-8 hours a night. Oh, the mysteries of brain development!
Peace. Jane
this is really called a "hangover" lol
That's a good observation Ohreally. maybe it is a really called a hangover. lol lol
I think this article is potentially harmful. My children and I all have narcolepsy which is a sleep disorder that occurs in approximately 2% of the population and most often appears in adolescence. It can significantly affect academic performance and all other areas of life. It is especially a problem in high school when students often begin arriving earlier for classes. I would have liked to see this article point to a link on the Epworth sleep worthiness scale or provide other responsible information on how to evaluate how much sleep is too much for parents.
I think cause we got so much pressure on us.
My 17 year old daughter has suffered with this since she was 10. The only difference is that she's had severe fatigue on a daily basis, not just a few weeks out of the year. In the last 7 years she's had 3 sleep studies, CT, MRI, and seen multiple specialists. Finally found out that she's had LYME DISEASE! Please be informed about this terrible disease. In 2008 there were 35,198 reported cases to the CDC; However, because of flaws in reporting, they estimate that the actual numbers may be 6-12 times higher than the reported #, or up to 420,000 new cases per year. Also, know that chronic Lyme disease is not cured by short term protocol of antibiotics.
The First then to check if your teen appears to be sleeping all the time, is that they are actually sleeping all the time. When I was a teen, I slept very late, but it was because I got in drunk at 3-5AM. If you to sleep wasted at 6 AM, then getting up by 5 PM is pretty hard.
If you catch Lyme Disease when you first get infected, they can often cure it. If not, you are pretty much out of luck, and it can really be bad. Treat every tick bite as a threat, and know what to look for.
...that is crazy. Being sleepy is not a disease? If you don't sleep enough at night then you get sleepy. A sleeping sickness? Sleeping...is healthy! So yeah...you all shouldnt think you have a disease okay? 🙂
@Chris...
Isn't the plural of 'fry' really 'fries?' Unless it is a proper noun, the 'f' should be lowercase.
".....the answer might lie elsewhere." Probably in the fact the teen stayed up all night playing video games or on the computer "social networking" on facebook or youtubing. Facebook and social networking should be an oxymoron, social is "face-to-face" contact. Most people don't even know all the people they "friend." No wonder young people today (there are exceptions, but not many) can't carry on a normal conversation face-to-face without stammering and stuttering, or their resume looks like they wrote it the same way they text. Ahhh yes, our public education system and no child left behind has done a world of good for our country (sorry about the sarcasm all over your screens).
What if he is getting up in the middle of the night to FB, WOW, or other online game or activity then it's not a sleeping disorder but a obsessive disorder.
What about the opposite problem. I don't think my 26 year old has slept 4 straight hours this century. It sometimes leads to strange symptoms that resemble Parkinsons. 7 Doctors, 0 answers.
Ha! in my reply to the bad English question, I made a typo. It should read "so" objectionable not "do".
My son has KLS and it effects his life with his job, social life and school work when he is in an episode. I feel sorry for the people who have so much time on their hands that they have to critique the grammar of an artilcle that was intended to give information on this disease. The article gave some helpful information to the people effected by KLS, bad and good grammar did not matter.
I'm 22, work a midnight 8 hour shift, go home and sleep until it's time to get up and go to work again. I function fine on my days off...Sleep is my favorite sport!
Chuck says it is worst to be a complainer than a bad speller.
My brother had this bizarre sleeping sickness when he was in high school. He missed a week of school. He just slept all the time. Only getting up to urinate and then back to bed.
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I have a question...My 12 year old daughter is sleeping almost 20 hrs a day gets up to pee only eats every other day I've tried getting her to stay awake during the day she will slump over and still sleep I thought maybe she was staying up to late watching YouTube use to be her favorite thing to do it's been going on for almost a week now she told me she just can't stay awake but at 2 or3 in the morning she can for a couple hrs she isn't playing her games or watching her YouTube or Netflix like before I'm worried and don't know what to do they did blood work on her it all came back normal they are scheduling a MRI... What can I ask her doctor to get to the bottom of this we live in a very small town