Children with autism often have sleep problems, and therapies such as behavior therapy (applied behavior analysis [ABA]) and melatonin may be helpful in treating these sleep problems.
The goals of this study were to see what types of children with autism also have sleep problems and to see how often parents of children with autism reported sleep problems. More than half of children with autism have parents who reported sleep problems. The study showed that many children with autism have sleep problems and that sleep problems are worse in children with more severe autism. Children who were on drugs (melatonin, clonidine, and diphenhydramine) to treat sleep problems had greater sleep problems than children who did not seek treatment. In most cases children with autism slept fewer (not more) hours than children without autism.
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Ch-ch-changes
Oct 15, 2007 by AnonymousI've waited so long to create a blog post this week because I've been waiting to hear from the neurologist about the video EEG results. She called this morning (and I was right...we did get the bill before the results!) to report that Thomas had no seizures while he was being observed. Which doesn't mean that he doesn't have seizures because frontal-lobe seizures are apparently difficult to catch. So why did we do the test? Who knows? I could be a neurologist! All they have to do is shrug their shoulders and say, "Gee, I don't know. How about another expensive test that will traumatize your child and most likely tell us nothing?" Argh. No disrespect to any neurologists out there, but I've just about had it and I know that there are many parents and kids out there who have gone through far more tests and trials than we have. I guess I just want answers, but neurology seems to be such an imprecise field with so many gray areas that I'm not sure exactly how worthwhile this whole journey is. So the doctor recommended that we do a sleep study and keep a log of Thomas' possible seizure behavior for the next two months. We're going to do what the doctor recommends of course, but I'm very concerned that at the end of all this, we may not know any more about Thomas' sleep problems than we did at the beginning. As far as the log goes, I'm going to have to rig up some kind of bell or whistle system to let me know when Thomas gets out of bed at night so that I can run into the kitchen and enter it in the freakin' log. Now who's going to need a sleep study to figure out their sleep problems? I'll be getting up every night for two months to write in the log! Oh well. Just another hoop to jump through.
We got a call from Thomas' teacher on Thursday night. She wanted to know how we would feel about Thomas switching to the higher-functioning classroom full-time. Of course, we're all for it. She was mentioning that Thomas now seeks social situations in which he can interact with classmates. He used to play in the messy-table all the time during play time; it was always his favorite activity. Now, he only plays there if there's another child to talk to. If nobody else is playing at the messy table, he'll go and play with another child, even if it's not his favorite thing to do. Lately, "science" and "construction" and "art" have been circled on the sheet that comes home to me. He's never done any science stuff and he dislikes creating art. Apparently though, he'll do those things if there's another child to interact with at those stations. He was also getting frustrated last week after he came back to his classroom from the other one. He was talking to a non-verbal girl in his classroom about what he did in the other class. The girl was not responding so Thomas thought she wasn't listening. He apparently took her face in his hands (gently, I was told) and made eye contact and told her again what he did in the other class. When he got no response again, he went and talked to his teachers about it. His teacher (and Jonathan and I) feel that he should be in a classroom that offers ample opportunity for give-and-take conversation, as this is the only way he'll learn that social activity. If he stays in a classroom where none of his peers responds to his language, he'll be getting the wrong message. His teacher and I decided that he will start class in the new classroom next Monday. We've been talking to him about it and he seems agreeable. We also decided that he should be allowed to visit his old classroom when he feels inclined, at least at first.
While Jonathan and I are very excited to learn that Thomas is seeking social situations (which seems so strange for an autistic child...), we wonder if he should have been in this higher-functioning classroom all along. Everyone at school has been saying that Thomas made a lot of progress over the summer though, so we don't really know how to feel about this. Should he just have been in the more challenging classroom all along, or did he improve that much over the summer and we just didn't notice it because we see Thomas every day? Either way, we're very happy that Thomas will be getting the social situations and activities he apparently wants to involve himself in right now. We're a little concerned that Thomas is still in the "honeymoon" phase of the new school year; everything's great now but after he finds his "comfort zone" he'll be up to his old tricks of screeching outbursts and sensory-seeking behavior. Then he might have to switch back to the old classroom and that would be just another change for him to accept. Also, everyone at school says that Thomas is just great, so well-behaved and nice to the other kids; his teacher said that she and her aid call Thomas their "morning sanity" because he's their only potty-trained and highly verbal student, and apparently, he's quite funny. So I call Thomas my "afternoon insanity" because for as well behaved as he allegedly is at school, he's twice as horrid at home after school! We think that by the time he gets home from school, he's so wound up from controlling himself all morning that he has to blow off steam all afternoon and evening. I guess I'd rather that he was well-behaved for school.
I now have to call and arrange for the sleep study and prepare Thomas for what will hopefully be the LAST TIME anybody will glue stuff to his head and expect him to sleep. I also must devise some kind of system to alert me to Thomas' nighttime movements. My mother suggested setting up an empty can pyramid in front of his bedroom door so that he can't get out without making a racket. Of course, the whole neighborhood will wake up from it, but at least then I'll be wide awake to go and write in the log book. After that, we'll spend several hours getting everyone back to bed. Gee, yeah - I wonder what all the sleep trouble is about? Figuring it out will cause more sleep problems than it solves!
Still on my plate
Sep 30, 2007 by AnonymousWe’ve been so busy that I just haven’t had the energy to write lately. At night, I just want to hang out in front of the TV or escape into the world of Harry Potter for a while.
Last week was very busy for our family. Thomas had that video EEG on Wednesday and Thursday so he missed school those days. He was actually very good for the test part which consisted mainly of just hanging out. The hook-up and un-hook was very traumatic for us and Thomas especially. Jonathan had to hold him down while the EEG technician super-glued twenty-four leads to Thomas’ head; each lead taking approximately one and a half minutes from start to finish. It was awful. Thomas was freaking out, and the nurse who was putting these things on Thomas seemed extremely frustrated with him. He kept screaming “Ow! It hurts! Mommy, help me!” He certainly knows how to play his mom! The “Mommy, help me!” thing went on for quite a while. I cried intermittently. But the nurse, despite Thomas screaming about how much it hurt, kept telling Thomas that it didn’t hurt, there was no “ouch,” no boo-boo, etc. I was getting mad! How does she know how that super-glue and air-gun combo feels to Thomas? No, there weren’t sharp needles and certainly nothing that would hurt an average person, but to Thomas, that air-gun thing and the acrid smell of the glue might have been torture.
During the testing part, especially after hook-up on Wednesday, Thomas was really good. Because it was a video EEG, Thomas was on camera the whole time. A nurse/technician was in the room with us from beginning to end making sure that the camera was pointing at Thomas every second (except in the bathroom). He stayed on his bed most of the day and was very well-behaved. Nice volunteers kept coming in to bring toys and movies for Thomas and he was very pleased to learn that this whole test thing included all the chocolate ice cream he could eat. And he ate plenty. Whenever he seemed to be getting restless or antsy, we’d run to the freezer and get a little ice cream cup. It worked really well. He had ice cream with every meal and for every snack.
During the night on Wednesday was the really important time for the test since it is Thomas’ sleep problems that brought us to this point initially. We were not allowed to give Thomas his sleep medication, so he was up until 11:30 p.m. He got up a couple of times in the night. He tried to crawl into my recliner at 4 a.m. but it was too small for both of us, so I got into his hospital bed with him. We stayed there until he awoke at 6:30 a.m. That was when his breakfast came! Is it just me, or is 6:30 in the morning way too early for food service employees to be bringing clattering trays of lukewarm food into children’s hospital rooms? Anyway, that’s what woke Thomas up.
In addition to keeping the camera trained on Thomas, the attending technician also kept a log of Thomas’ activity every few minutes or so. When we woke up on Thursday morning, I looked at the log and noticed that the computer recorded two “events” during the night. One was at 12:30 a.m. and the other was about two hours later. These are obviously neurological events, so I’ll be eager to hear what the doctor has to say about them. We have to wait two weeks for the doctor to review the test and call us back.
While Thomas was being really good on Wednesday, Jonathan’s mom came to see him. Thomas sat in his bed and talked for nearly two hours, nonstop. It was exhausting for us to listen to, but it was so funny too! Jonathan finally realized what was going on with Thomas; since he was tethered to a machine and unable to go very far, he was getting rid of all his energy through his mouth. He would not stop, I tell you! It was really funny and interesting. I knew Jonathan was right…I couldn’t believe that Thomas was being as still and well-behaved as he was, yet his body had to find some way to expend the pent-up energy. Thank goodness he decided to talk it out.
The frustrated nurse came back again on Thursday to take the leads off Thomas’ head, and this experience was almost as horrible as putting them on. They put mineral oil or some kind of spirits on his head to dissolve the glue (non-acetone nail polish remover, I think) and Thomas was not having any of that. He freaked out again, but at the end of it the leads were off instead of on. We rinsed his head and Jonathan took him to the play room down the hall while I waited (and waited and waited…why are hospitals so slow to discharge patients?) for the nurse to give me discharge instructions. Every time I have been in the hospital, I seriously consider just walking out after the doctor gives me permission to go home. What were we waiting for? Thomas was not sick, not post-operative and had no wounds or dressings or fevers that needed care …why do we have to wait forever to be officially discharged?
Of course we didn’t just walk out. We waited around for the very important instructions that told us that Thomas is on a “normal” and unrestricted diet (knew that) and can resume normal activity (knew that, too). Thomas was very glad to be home and just this weekend got rid of the rest of the glue in his hair. I’ll make sure to let everyone know about the results when we receive them.
Thomas and Hayley had a fun weekend! It started on Friday night when the Cubs clinched the National League Central division title! Woo-hoo! My sister and her fiancé came over to watch the game and we had a great time. Saturday, my mother-in-law picked the kids up and took them to her friends’ ten-acre property for the big Hayride and Bonfire Party that they have each year for everyone’s grandkids. Thomas and Hayley went with their cousin and Jonathan’s cousin’s son. That meant that Jonathan and I had some time to ourselves to remember what it was like before we had kids. We didn’t do much. We bought a movie at Target and brought it home to watch. We baked an apple pie and I did a lot of painting (we’re re-painting most of the rooms in our house). Very exciting, I know. But it was so quiet! It was so peaceful! Then the kids came home this afternoon just as the Bears were officially losing the game against Detroit and thus ended both the quiet and the peaceful. Especially for Jonathan. I never realized that a football game, either won or lost, could so greatly affect the general atmosphere in our home. So alas! Another week of grumbling and head-shaking. Thanks for nothing, Bears!
Thomas’ teacher called us yesterday. She mentioned that Thomas is the highest functioning child in her class as far as language is concerned so she wondered if it would be okay if he spent some time in another classroom with kids who can help him learn some of the nuances of social language. Apparently, there’s not a lot of talking amongst the kids in Thomas’ class and his teacher (and the principal, with whom this was discussed) wants to challenge him a bit more and help him really progress this year. I was very happy to hear that from her since I’ve been a little disappointed in Thomas’ curriculum so far. The first week was all about colors. Great, but Thomas already knows his colors. The next three weeks are about shapes. I’m a little more on-board with that, since Thomas could use practice drawing shapes. But still, he knows a lot of shapes. I don’t really want this year to be a review for Thomas; it has to be a little more challenging so that we can really prepare him for kindergarten. I never really understood the reasoning behind Thomas’ class-placement this year anyway. There are no other autistic children in his class, but there are at least two kids with Down Syndrome and other varying disabilities. I’m not sure what this means. I know that Thomas is one of the oldest in his class, but I don’t really understand anything about why this class was chosen for Thomas. Duh…maybe I should ask!
So Thomas will go to spend play time in another teacher’s class just a couple of times a week at first. Depending on his response, they may take him there more often. I’m very interested to see how that goes and if it helps Thomas with social language skills. His teacher said that the “demographic” in the other classroom is mostly kids with slight to moderate language delays. I’ll make sure to let everyone know how Thomas responds to this new routine.
I was really dreading the video EEG thing, but now that it’s over I feel like things are calming down a bit. The first half of the week is usually a little hectic for us with Hayley’s dance class and Kid Rock. We’ve been doing okay with the dance class so far; Jonathan has been home by 4 p.m. the last two Tuesdays in a row so my sister Tina didn’t have to come and take care of Thomas for us. We’re having our windows replaced sometime in the next three weeks and I really want to get the air vents and ducts cleaned before winter hits, and the bedroom carpeting…I always feel like I can only have a few tasks on my mind at a time and no more than that or something will have to give. The EEG is off my plate, but depending on the results, there’s a good chance that I’ll have to take Thomas in to see the doctor soon. I can’t really file all of that away until I have the results, if any. If any medical professional says the word “inconclusive” in reference to that EEG, I’ll scream. You’ll probably be able to hear me from there.
Keep those diagnoses comin'!
Jul 26, 2007 by AnonymousLots has happened since my last blog. My grandmother’s birthday party was a complete surprise to her, even though I had my doubts. How do you keep fifty family members from accidentally spilling the beans? Somehow, though, it came off without a hitch. The only problem we had was that Thomas and Jonathan missed the surprise because Thomas was concerned with the fact that we had left our car on the next block. He kept wandering over there and Jonathan had to follow. Once the surprise was over, I moved the car to our usual Uncle Tom’s House parking spot and Thomas settled down. Again, the kids swam until it was dark. We had a really good time and Grandma was very surprised.
We visited the neurologist again last week and we chatted for a while about Thomas’ nighttime antics. The Clonidine is still not keeping him asleep like the doctor thought it would, so we talked about exactly what he does when he gets up in the night. After thinking for a moment, the neurologist asked that we bring Thomas for an EEG (electroencephalogram), when they put stickers and wires on his head while he’s sleeping and wait for something (a seizure) to happen. The doctor was concerned, after I told her about how Thomas wet his bed several times in one night and seems to have a “lights are on but no one’s home” look about him when he wakes, that he is having seizures. I’ve been asked many times before if Thomas has seizures, but I wrongly assumed that seizure behavior is passing out and writhing on the floor for a few seconds. After educating myself with the pamphlet entitled “Understanding Epilepsy” that the doctor provided, I’ve learned that seizures can be a blank stare, slight twitching, a single severe muscle spasm and other things I had never thought of as “seizure behavior”. Once she gave me that particular piece of literature, a red flag was raised: So Thomas could have epilepsy ON TOP OF autism? Swell! Let’s keep those diagnoses comin’! By the way, I gave the neurologist the studies on Namenda/Memantine, and she remains unconvinced that there is enough information available on the drug for use in children with ASD. I’m not sure what to do next…how much money would I need to bribe her, I wonder? Maybe I should turn these requests into a singing telegram. I can bring balloons and my tap shoes next time and wear an ape suit.
Thomas may not have epilepsy, in fact; the doctor wants the EEG just to make sure that epileptic seizures are not to blame for the sleeping problems. So if Thomas has the EEG and it’s abnormal, then we come back for a consultation with the neuro. If the EEG is normal, then she wants him to do a sleep study. I’m so excited for these tests that I can’t even express it in words!
Not.
The preparation for an EEG is horrific. I mean, if I was the one who had to have the test, it would be no big deal. The fact that I have to prepare a four-and-a-half year-old autistic child for it absolutely curls my hair. The whole idea of this test is to get a look at the brain waves while Thomas is sleeping, so sleep deprivation is key to the success of the EEG. The person on the phone instructed me to put Thomas down for bed at the normal time and then wake him at 1:30 a.m. (in the morning, in case you missed the “a.m.”) and keep him awake until the test which is scheduled for 10:45 a.m. Trying to get him to stay awake in the car on the way there is going to be a scream! Jonathan is taking that day off work so that one of us can drive the car while the other entertains Thomas. If we can just get him to stay up all that time, the test should go fairly smoothly. Of course, I’m going to need someone to keep me awake all those hours. Everyone’s sleep schedule is going to be completely screwed up. I already know exactly what’s going to happen. Our whole family is going to be up at 1:30 a.m. like a bunch of vampires.
The main thing is that I really don’t know what to hope for in all of this. Like, what are the best-case and worst-case scenarios? How can the best-case be that Thomas has epilepsy? That’s just silly. Then again, if he doesn’t have epilepsy, we have to dig even further and do a sleep study (again, my hair is curling just thinking about that) and continue to grab at straws. Then, they may want to do an all-day EEG where I have to get Thomas to walk around like Frankenstein for twenty-four hours with a mobile EEG pack around his waist and wires sticking out of his head. What should I hope for? This may sound horrible, but I would be fine with it if Thomas has epilepsy. My best friend has epilepsy and she’s completely normal with her daily medication. If epilepsy would help us pinpoint Thomas’ sleeping problems, fine. So we’re beginning another journey to possible diagnosis, and possible nothing. This whole thing may lead us to no answers at all. “Yeah, your son has sleep problems. We can’t figure out why. That’ll be nine zillion dollars. Have a nice day!”
Yeah, yeah, I’ll try to stay optimistic. The EEG is scheduled for August 16th.
Otherwise Thomas has been pretty good. We’ve gotten Hayley almost completely potty-trained, so we’re done with diapers! She sometimes doesn’t make it through the night without wetting the bed, so we’re putting her in a diaper at bedtime (okay, so not “done-done” with diapers, but pretty close). In the morning, bless her little heart, she gets up and goes to the bathroom all by herself without waking me up! She’s doing a great job (even with #2!) and we’re so proud of her. Thomas is obsessed with our cars (again or still?) and demands that I pull our truck in the garage in the morning so he can look at it and get in and out of it. He enjoys it and it’s not hurting anyone, so I let him do it. He has been talking about how he wants to be a racecar driver, which is cute. Today he wanted us to go to the “car store” and buy a Toyota Highlander like the one my dad drives. I told him that I don’t have enough money to buy one and that they cost around forty thousand dollars. Thomas remained firm in his desire despite my silly lack-of-funds problem. He’ll just have to wait for Grandpa to work on our boring old Suburban again so we can borrow his car.
It's working!
Jun 22, 2007 by dankohnThe neurologist appointment on Wednesday went pretty well. We were almost late because the directions I had received were not correct. I called the hospital from the car though, and we were back on track just in the nick of time. Thomas was upset that we were going to see a doctor and gave me a hard time about getting out of the car. I had talked to him about it on Tuesday and told him the doctor’s name. He kept saying that he didn’t want to talk to her, but I eventually coaxed him out of the car. Lately, with transitions Thomas is like a light switch. He protests for a few moments and then all of a sudden, he’s willing to move on.
I really liked the neurologist we saw. She was very friendly with Thomas and he liked her, answering her questions. The only snag I ran into was regarding the Nemenda medication I was interested in. I asked her first if she had heard about Clonidine, and she responded very enthusiastically that she had. After we discussed that for a moment, I mentioned Nemenda. She said that she didn’t like prescribing it for children and that it’s usually prescribed for adults with Alzheimer’s or dementia, which I already know. I pressed her and asked what she knew about it in terms of autism, just to satisfy my curiosity as to why she is unwilling to prescribe it for kids. That was when she came clean, saying, “I’ll be honest with you. I really don’t know much about it.” Hmpf. At least she was honest.
The good news is that she did prescribe the Clonidine for Thomas. She said that it should help him not only with the sleep problems but with some of the OCD behaviors we’ve been having trouble with. She prescribed 0.1 milligram pills which I had to cut in half to give him the correct dosage about an hour before bedtime. I had some trouble with this. The pills are scored, so I had a guide for cutting them, but one half was almost always a bit larger than the other half. My mom told me about pill cutters which are readily available at drugstores, so if the dosage doesn’t change, I’ll have to invest in one of those.
On Wednesday, I gave Thomas one of the smaller halves at 7:30 p.m., about an hour before bedtime. As far as we could tell, the medication had absolutely no effect on him. It still took him a good hour to settle down and another half hour to fall asleep. As Thomas made racket in his room, Jonathan and I exchanged nervous glances, saying every so often, “Gee, that stuff’s working like a charm!” Of course, we knew that it might take a couple of days to really kick in. Like most Americans today however, we were looking for instant gratification. We had to wait for Thursday night.
On Thursday, Thomas had a horrible day. Every minute or so, he would pick a fight with Hayley, have a screaming outburst or start slamming doors. The best part was when he requested a banana for a snack. I gave it to him and got involved with the dishwasher, only to find out later that he had chewed up banana chunks and spit them all over his room. Whee! That was a fun clean-up session. Jonathan always knows I’ve had a rough day when I call him and bug him about when he thinks he’ll be home.
So last night, after the day from hell, we decided to tweak the medication schedule a bit. Since it took so long for Thomas to go to sleep on Wednesday night, we decided to give him a larger half of a pill about an hour earlier. We had dinner and I gave Thomas the medicine at 6:30 p.m. I got involved with some other chores and cleaned up the kitchen and stuff. At 7:15 p.m., I realized I hadn’t heard from Thomas for a while. I figured that he was playing in his room, so I went looking for him. He was sound asleep in his bed. Jonathan, Hayley and I went in there and tried to rouse him to get him to go to the bathroom, but he was really sleeping. We immediately took back our sarcastic comments of Wednesday night and had a relatively peaceful evening after that. Thomas did get up around 10:00 p.m. so we took him to the bathroom and he went back to bed after that. He got up and wandered around a little later too, but went back to bed again. He was in bed with me this morning when I woke up, so that’s still the same old story. The neurologist said that the Clonidine should help keep him in his bed all night at some point, so we’re looking forward to that.
Today, Thomas’ behavior was much better. Not so much fighting with Hayley and actually listening to me, or rather obeying me without much fuss. If I asked him to stop doing something, he stopped. He got kind of wired after Jonathan got home from work which is his usual M.O., but I wasn’t complaining because he had been really good all day. We decided to tweak the dosage schedule again, giving him a larger half of the medication at 7 p.m. Tonight when I started doing the “bedtime countdown,” Thomas protested a bit, but very quietly. We put the kids down a little earlier, around 8:15, and Thomas was asleep at 8:30! So we think we’ve got it right now. I’m so glad that this Clonidine is working because I think that fragmented and just plain not enough sleep are the culprits for much of Thomas’ frustrating behavior during the day. He didn’t really seem to need any occupational therapy help today and he didn’t have many screaming outbursts.
I’m supposed to call the doctor in two weeks to let her know how Thomas is doing on Clonidine, so I’ve started a log to keep track. Hopefully, we’ve got the dosage schedule right now. The doctor mentioned that this is a very small dose and she had a feeling that she would be increasing it. Right now, it seems like a larger half of the pill an hour and a half before bed is working out, but we might (after the doctor gives her okay, of course) give him a smaller half when he wakes up in the morning. She thought that eventually, he would be taking an entire pill over the course of a day.
I’m also considering e-mailing her a few website links about Nemenda. Even if she doesn’t think it’s appropriate for Thomas, she should probably still know about it.