Sleep

Melatonin – The Kinda, Sorta, Wonder-ish Supplement for Sleep

by Tim on November 13, 2011

A while back, we were at a crisis point with our J-Man’s sleep. It would take him 2-3 hours to go to sleep at night, which usually resulted in him going to sleep between 10-11PM. He was completely unable to calm himself down at night. We’d look on the video monitor, and he was essentially doing the equivalent of breakdancing in his bed, bouncing off the sides of the bed and up and down on the mattress. He was hollering, squealing, and screeching a lot, typically the sounds of being overstimulated and too overloaded to relax at all. Eventually he’d pass out from exhaustion and sleep. This was affecting everything from school to life at home.

He never has been a great sleeper, to put it mildly. He didn’t sleep through the night until he was 18 months old, and even then we endured long stretches where he’d get up at least once or twice a night or get up really early. There were countless nights where he wouldn’t go to sleep unless we were in the room holding him. We went through long periods of it taking herculean efforts just to get him dressed and ready for bed, let alone get him to sleep.

It started getting better, and we got to where with some confidence that we could expect him to make it through most of a decent night. Then we hit that patch a while back where he was just completely unable to put himself to sleep until he passed out from exhaustion. He was doing poorly at school and at home, he was unable to regulate himself much at all during the day because he was too tired to cope, and of course we were all on the edge of insanity. It was a really grim time around here.

We knew we had to do something and soon. If you aren’t getting sleep, everything else will go to hell. Sooner or later, you will break. We didn’t know what we should do, but we were ready to consider just about anything at that point.

One of the things you won’t see me do much is talk about or advocate supplements. I personally take a typical assortment of things (e.g., multivitamin, fish oil, probiotics), but I take the supplements market with a lot of skepticism. The rigors of testing and science in general are regularly missing when it comes to these largely unregulated products. We give our J-Man much the same kind of things: multivitamin, probiotics, calcium (since he eats almost nothing dairy or anything else with calcium in it), and a green superfood powder that is about the best we can do right now for vegetables since he refuses to eat them. It’s not the same as real food, but it’s the best way we can improvise at the moment.

All sorts of people gave us advice about pills, supplements, and medications, many of which I found rather dubious. So that’s the perspective we brought with us when looking at our J-Man’s sleep difficulties. Bottom line is that we knew we had to do something or we were all going to go crazy. Sleep is the foundation for everything in daily life, and no one was doing well without it.

I’m not really spoiling the plot to jump ahead and say that we settled on using melatonin, which has worked well for us. Before we entertained trying something like melatonin or something in prescription form like a sedating-type mood stabilizer, we tried everything else we could think of. We aren’t opposed to medications by any means, but since our J-Man is minimally-verbal, it’s really hard to know what effects medications (or much of anything we do) specifically have.

I don’t like experimenting without some means of understanding the effects of what we do. I’m a pretty analytical type. I like knowing how things work and why. I bring this sort of process to bear when we attack problems like sleep.

Here are non-supplement/non-medication things we tried over the years that worked to varying degrees. I do think it’s worth experimenting with these and similar techniques before giving your kids any supplements or medications.

  • Structure your nighttime routine. Do the same thing every night when getting ready for bed as predictability itself is often calming.
  • Institute a standard time for bed. This is true for most kids and adults whether they’re on the spectrum or not.
  • If your child likes water, try a nighttime bath. A nice, warm bath can be very relaxing.
  • Look in your child’s bedroom for sensory violations, and don’t forget the fabrics they wear to bed. If anything seems bothersome to your child, eliminate it and see what happens.
  • Try a white noise machine if any sudden noises wake your child or keep them from going to sleep. Many find white noise machines calming regardless.
  • Look at diet, particularly in the afternoon and evening. Are they eating things that could keep them awake (e.g., spicy food, high in fat), eating a lot before bed, or drinking things that inhibit sleep (sugar or caffeine)? Are they allergic or sensitive to foods or drinks that would then upset their sleep? Are they experiencing silent reflux?

Be prepared for these changes to be a battle at first, but stick with it. One or more of them may pay off. Also don’t forget that if your child gets out of bed if they can’t sleep, make their room safe. Sleep deprivation can be very agitating.

If all this fails or if it stops working, consider these medication type interventions. We started with melatonin, which is an over-the-counter sleep supplement rather than what I’d consider medication. It has proven sufficient for us right now. It may not remain so, and we know that. When or if the time comes for us to adjust what we do, we will attack the problem then.

The first few days didn’t go too well, but that did pass. This isn’t unusual. At first, he’d wake up in the middle of the night, and it was really unpredictable about what would happen after that. He might go back to sleep after a while, or he might have just stayed up for good. We had this sense “Oh, crap” feeling about it when all this happened. We worried that we were trading off him taking forever going to sleep for him going to sleep quickly but waking up at 3AM – essentially the same amount of total sleep shifted backwards three hours. Thankfully after a week or so, things stabilized. He was going to bed pretty quickly and getting up within reason of a normal hour. (6:30-7:00 AM plus or minus)

Some parents we know have reported undesirable side effects that don’t go away, though. One reported that their child had night terrors upon taking it that went away when they stopped. Others have said the problem of time shifting their kids’ sleep (going to bed earlier and getting up earlier) rather than getting more sleep didn’t go away. Some parents found their child got more and more resistant to the effects of melatonin as time went on. Our J-Man seems to have had a more unusual side effect. His bowel movements changed for quite a long time, though now they are getting closer to normal. I can’t say for sure if it’s from the melatonin or why it happened, but it seems likely they’re somehow related. This hasn’t proved a big deal for us, though.

This past week, he has been getting up very early again – about 5AM. We can attribute a lot of this to the time change, which is always the bane of our existence. We have started to wonder whether the current dose of melatonin isn’t working as well, but we’re taking a wait and see approach about that.

Most everyone starts with the 3mg dose. Melatonin is available at most big box and drug stores and is very inexpensive. I know some have bumped up to 5-6mg and/or have ended up supplementing it with a prescription medication. The 3mg remains pretty effective for us. I’ve heard mixed reactions to time release melatonin, some saying it works out that the dose is never strong enough to get or keep them asleep.

Melatonin is definitely one of those “your mileage may vary” products. It is generally considered very low-risk, so as experiments go this should be one you can do with less anxiety. However, for children under age 5, I’d suggest being more cautious and going over this carefully with your pediatrician, which really you should do regardless. I don’t know what the minimum age is – or if anyone knows – but as a rule, the younger the child the more careful you should be.

[Edit: 11/14/11 - The day after I posted this, I saw this article "Genetic studies probe sleep hormone’s role in autism" about a study finding much lower concentrations of melatonin and the enzyme that produces it in their autism group vs. their control group. Very interesting!]

If you try melatonin and it doesn’t work, you may want to consider prescription medication. I know many families who have gone this route to varying degrees of success. Many meds that normally aren’t used for sleep disorders do work for autistic children for reasons no one quite understands. While off-label use of prescription meds is rather common among autistic children, it’s still pretty confusing to parents and medical professionals, too. There indeed are meds primarily for mood disorders that are traditionally used for calming and sleep in neurotypical people that also work for autistic children. You should be very careful with these in my opinion and not use them without caution and close supervision of a qualified medical professional, particularly a child psychiatrist who specializes in autism.

I personally from experience would not recommend using psychiatric type meds under the direction of a pediatrician or general practitioner. I think it’s critical to find a specialist in both autism and pharmacological interventions. These are not meds to screw around with, and it’s rare that pediatricians have the specialized knowledge required to manage medications with autistic children, particularly when many specialists don’t yet understand how or why many medications work with our kids either.

Standard disclaimer that you should always use supplements and medications under the direction of a qualified medical professional. Melatonin is one of the safest and natural options available for helping your child sleep. I wouldn’t say it’s been a ‘wonder drug’ like some make it out to be, but it definitely has given our son a number of improvements to his sleep that have made life easier on everyone. We certainly give it a thumbs up.

[Thanks again to Danette at S-O-S Research for including this post in this month’s Best of the Best series on ”Medications and Their Use with Special Needs Kids” edition. Starting November 15, you can see the entire collection of posts via that link.]

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Climbing Out

by Mary on July 30, 2010

(Hello people! We are sort-of alive!)

The night before we went on vacation, the J-man hit a milestone: he learned to climb out of his crib. He learned it so well that he did it until 3 AM, when he finally collapsed into sleep… and then so did we, because he hasn’t yet learned to climb back in. (I was up 3 1/2 hours later to get ready to leave, and let me tell you, driving a 7-hour drive that turned into a 9 1/2-hour drive with a crying baby on 3 1/2 hours sleep is bad.) The way we found out he knew how to climb out of his crib? Tim turned on the video monitor to take a last look at the J-man for the night, and said, “Where’s our son?” We searched FRANTICALLY, and ended up finding him curled up in his closet, door closed, stuff piled on him. ACK!

So now we have this problem – he likes his crib, and he likes sleeping in it. But he also likes climbing out, and then can’t get back in.

Scene: Bedtime for J-man

Having just closed the door to the J-man’s room after setting him in his crib, Mary runs into our bedroom where the video monitor (very old, WIRED, monitor is the size of an old Mac Classic and sits on Mary’s dresser) is already turned on. As soon as Mary sees the J-man hike his leg to the top of the crib side, she RUNS back to his room and opens the door…and the J-man plops back down. *cue innocent whistling sound effect* Mary says “Good Night” and closes the door.

The J-man makes lots of noise, rustling around in his crib, standing up, and propping the same leg over the side of the crib. Mary RUNS back to his room and opens the door… and the J-man plops back down. Mary says “Good Night” and closes the door.

The J-man looks all around, trying to figure out how Mama knows he is trying to get out of the crib. He stealthily stands up, quietly eases his leg up over the side of the crib… and BAM – Mary opens the door! The J-man plops back down innocently, and looks over as if to say, “Who, me?” Mary says “Good Night” and closes the door.

Repeat one of those 3 vignettes.
Repeat.
Repeat!
REPEAT…
REPEAT!!!eleventy-one!!

End Scene: J-man is sleeping

Of course, the whole time I’m trying not to laugh out loud (we do snicker quietly), because the J-man really is confused as to how we know when he’s climbing out.

We’ve gotten better at it. Tonight I only had to run in 3 times total. (Of course, now that I’ve written this, tomorrow night I’ll be there for 2 hours running back and forth.)

We still haven’t decided whether to just change the crib over into a toddler bed (but the J-man tends to fall out – not that falling out wakes him!), try a crib tent (he’s almost 5; I think he could tear one of those to pieces the first night), or just make the jump to a big bed (again with the falling out issue). (Also, could I write more parenthetically?)

In the meantime, I’m getting my exercise just running up and down the hall.

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Are You Smarter Than a Four-Year-Old?

by Tim on December 9, 2009

This past weekend, we hit a pretty big low around here. We’d been having all sorts of problems – on top of the myriad other sensory problems – with the J-Man pulling off his sleeper (not unzipping it, but just plain shimmying out of it) and diaper every night within five minutes of going to bed, peeing in his bed, and then just lying there. We’d go in, reclothe him, change his sheets, fuss at him, and put him back to bed.

For a while, this was enough. One cycle of him stripping down and us coming in apparently was enough for him to then settle in for the night – clothed – and sleep. There was the other issue that he’d strip the second he woke up in the morning and do the same thing. If we weren’t in there fast enough, it was time to change sheets again and clean him up as part of everything else we do to get him ready in the morning.

Then about a week ago, things really went downhill. He wouldn’t keep anything on while he was in the bed. We tried fleece sleepers with feet, without feet, two-piece pajamas, etc. and nothing stayed on. We’d check on him a few minutes after changing him and the bed, and there he was naked as the day he was born with his clothes and diaper wadded up in the crib with him. Finally, we ran out of clean sheets. We started laundry, but quickly he fell asleep. So, we let him sleep au naturel.

Next morning, he was wet, of course, but we marched him to the shower, cleaned him up, and went on with the day. Next night, same ordeal, so we just gave up and let him sleep that way again. After the last ‘argument’ with him about it, once we let him be, he fell asleep quickly. Same morning, similar trip to the shower and on with the day.

We weren’t happy with this since obviously he doesn’t have enough control yet to not wet his bed, but short of restraints, we had no idea how to keep his clothes on him. He’s widely known for his Houdini skills and feats of flexibility, trust me. We decided to pick the less bad option and let him sleep that way.

This is where the concept of ‘less bad’ takes a hideous turn.

[click to continue…]

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A Tale of Two Babies

by Mary on August 19, 2009

[In case you're wondering about the whole 'Dale Jr.' thing, for you non-Southerners, the son of Dale Earnhardt - a stock car racer of Biblical proportions - is often referred to as Dale Jr., but originally his nickname was Little E. So it looks like our Little E is now Dale Jr.! If that made no sense, just go with it.]

It may have been the best of times. It may have been the worst of times. I really can’t tell you. I remember very little of the J-man’s first year. It was really a blur. I was SO TIRED all the time then that now, when Dale Jr does something, I ask Tim if the J-man did that too… because I truly can’t remember. So, for your reading pleasure, a comparison of the two so far:

Sleep:

J-man: what’s that? Why would you think I needed to sleep? I have to be up to eat every 2 hours anyway, so why would you force me to try to nap (for 25 minutes initially, although we did get that number up to FORTY WHOLE MINUTES)? I sometimes will only sleep while in a carseat with the car moving, so Daddy perfected “driving naps on 540.” Also, putting me down “drowsy but awake?” HA HA HA HA HA. Seriously, just nurse me to sleep, then hold me for at least another 30-40 minutes to make sure I’m really asleep, then carefully, carefully, carefully put me down, leaning your whole upper body into the crib so we are touching until the very end. Plan to be back soon! If I make a noise, or shift slightly, go ahead and get up, because I will be. I was still waking every 2 hours at 7 months, and didn’t sleep through the night until I was 18 months old.

Dale Jr: obviously read those “sleep books.” I love this. I love my crib. Is my thumb there? Then we’re good. I started sleeping 10-12 hours straight per night at 2 months old. I am the poster child for “put me down drowsy but awake” which Mama figured out only because she really had to go to the bathroom, so put me down in my crib for just long enough to do that… and I was out when she came back. I enjoy napping, and have been able to self-soothe from the beginning pretty much. Mama and Daddy spent several nights waking up to make sure I was still alive because they couldn’t believe a baby could sleep that long.

Eating:

J-man: I will nurse and nurse and nurse and nurse and nurse. And hate the bottle. And nurse and nurse and nurse and nurse and never let go even while sleeping. PS: and nurse.

Dale Jr: I nurse when I’m hungry, and then I’m done. I don’t especially like to go to sleep nursing. I have taken a bottle a few times, and seem to be OK with it. I DO nurse about every hour during the day (when I’m not sleeping) but since I don’t nurse at all during the night, Mama is perfectly happy with that.

Size:

J-man: I am HUGE and outgrew some clothes before I ever got to wear them.

Dale Jr: I am HUGER and outgrew a LOT of clothes before I ever got to wear them. Also, I’m out of sync with brother’s clothes sizes, so the hand-me-downs aren’t helping at all. Also, I’m growing out of the 9 month summer clothes that Mama bought when I was 2 months old because I outgrew the 6 month clothes she bought when I was 1 month old.

How Mama’s work is going:

J-man: I occasionally made Daddy drive me to Mama’s office because I would go on bottle strikes and refuse to eat. I ate enough during the day to not starve to death, and then nursed until I could not nurse more at night which made Mama tired. People in Mama’s office got very angry when she went to pump every 3 hours. Mama is surprised she didn’t wreck driving to work everyday in a daze state from lack of sleep.

Dale Jr: Mama’s work people have heard me on conference calls because sometimes I need to eat, and are perfectly fine with that. They also realize Mama gets way more work done now that she’s home.

How Daddy’s work is going:

J-man: Daddy doesn’t get to work during the day. Ever.

Dale Jr: Daddy can work while I nap. Sometimes.

Maybe now is the best of times. It’s not the worst of times. It is a good time.

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Social Smiles

by Mary on June 10, 2009

I remember the J-man’s babyhood as a blur of sleep deprivation and just making it through the day. Of course, we were so incredibly clueless about anything to do with babies then. The J-man was about 7 months old when he stopped nursing every 2 hours, round the clock. (At 7 months, he started ONLY getting up three times per night.) I was an AMAZINGLY tired woman. The fact that I drove back and forth to work without wrecking is miraculous.

Tim did a lot of “driving naps” because the J-man would only nap either lying on someone, or in the car while the car was moving. If Tim wanted to eat, he did it in the car while I was at work. Sometimes the J-man would refuse bottles of pumped milk (for days at a time), and Tim would end up driving to my office so I could nurse instead of pumping. We would sit out in the parking lot for 20 minutes, then they would leave. Tim would pick up lunch for himself and me, so he would eat while I was nursing, and then I ate a cold lunch. I learned that Bojangles chicken is good at any temperature!

This time around, there are many differences. For one thing, there are times when E will actually nap… in the pack-and-play, or in the crib. Granted, he, like many babies, would rather sleep on us than in a bed, but since the J-man refused to nap ANYWHERE except on us or in the car, we take this as the blessing it is. Also, when I go back to work (next week! stupid TCTSNBN and their new rule that c-section moms still only get 6 weeks even though we’re recovering from major surgery and NOT getting to rest in bed during that time) I’ll be working from home, so at least will be able to sleep a little later in the morning, and shouldn’t have the “reverse cycling” issue we had with the J-man. We hope. Pepaw seems so much more comfortable handling a newborn this time, so he comes over occasionally, and can hold E to get his fix… and then play with the J-man to get that fix. Yes, our kids are in fact illegal drugs.

Today was the first day that I’ve truly seen a social smile from E. He had woken from a nap, was clean and had nursed, and I propped him up on my lap and just talked and played and beeped his nose. He smiled… BIG smiles. It was incredible. I teared up (hey, those post-partum hormones hadn’t had a chance to come out before now) and called Tim down to get him to see. He held the little guy, and played with him, and got some smiles of his own.

I told E last night when he wouldn’t go to sleep that it was a good thing he is so cute because otherwise I might have to throw something. If he smiles at me tonight when I say that, I’ll have to wonder if he has inherited Tim’s sarcastic sense of humor. Or mine.

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When the Only Thing Routine is the Lack of Routine

by Tim on June 2, 2009

It’s hard to comprehend that Little E is four weeks old today!?!? Time flies! Perhaps it particularly flies when you’re too tired to understand the concept of time anymore. :-)

We do seem to be getting some aspects of the baby’s sleep to a better place, so we are starting to get a bit more sleep at night, and sometimes even in our own bed too. The nursing/recliner sleeping thing has certainly been rough on Mary. I think we’d both forgotten how much the sleep depravation babies bring with them can turn even the best of us into drooling, narcoleptic idiots.

The J-Man is struggling more than before in his adjustment to everything. Weekdays when he’s at school much of the day, he does fairly well overall. We haven’t seen any major, ongoing issues at school, which we think has been a real achievement for him. He certainly has been ‘off’, with his teacher and OT noticing what we have been at home – he’s hard to calm down and get to focus and generally keep still in one place for any length of time. It’s clear the lack of structure in our chaotic house right now is really causing him some stress.

A couple of hours after he gets home from school, he gets more and more into his “running rebel yell” mode, where he runs aimlessly around the downstairs hollering. He’s not upset or angry or anything – as a matter of fact, he’s generally smiling and even laughing while he’s doing it – but it’s like he’s turned into pure, nearly uncontrollable, kinetic energy. Eventually he can get so overloaded that he starts coming unraveled. This has been really bad over the weekends where he doesn’t get the structure of school and losing him to his frenetic running and hollering is almost a given.

We’re been doing some serious therapeutic brushing and joint compressions lately [a real basic overview here - just don't go doing it on your own without a trained OT], which do help, but when he’s heading toward full freak-out, the calming effects of them last little more than a few minutes. Even staying ahead of the freak-out, the brushing and compressions only seem to partially forestall the inevitable. Right now, we can’t really have much structure around the house, so it’s clear we need some more serious sensory intervention.

The OT at school is starting him on an experiment with a weighted vest. [a decent overview here] We tried this about a year ago. He was kinda young for it then, and even the little bit of extra weight threw his then more fragile gross motor skills and balance off so much that he couldn’t even walk in a straight line. Reports from Day 1 of this latest experiment with it was mixed and inconclusive, but it takes a few days to discern much about whether it’s helping or not.

On the personal side of things, to be honest, I’ve been having a very rough time of things the last several days. Prolonged lack of decent sleep is usually a one-way ticket to a bad place for me regardless of anything else. Most days, I’m a walking, finely-tuned chemistry set. With our daily – particularly nighttime – schedules being what they are right now and all the new and exciting and stressful and sometimes confusing changes in our lives, I haven’t found a way to rebalance that equation.

Physically, my body is feeling a lot older the past couple of weeks, too, to the point where it’s often hard to bend over to do much and even walking anything more than a couple of lengths of the house feels like running a couple of miles. I’ve seen more of my chiropractor than usual, and I’m going for more therapeutic work tomorrow to see whether she can get my back and knee to move. Even simple things like bending over to change a diaper or walking the baby around are getting harder.

Trying to coax a non-sleeping baby through the night and a stressed, unfocused, whirling dervish of an autistic toddler – along with his crying brother – through the day has some weekends felt like a bridge too far for me. I think it’s the need to divide time between them that’s been the hardest for me. I haven’t reached any sort of peace with that yet. I know it’ll come someday. Right now, it’s just hard.

I had forgotten how tiring and emotionally and physically challenging these first weeks with a new baby can be, even without all the other stuff in our lives. I just hope we soon get to the point where we get just enough sleep to restore just enough brain cells to really enjoy and appreciate how good things really are. It’s hard to keep perspective when your main objective is simply to make sure everyone is wearing the correct clothes and you don’t drool on yourself in public… at least not much.

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What’s Your Autistic Toddler Like Now? (Part 3)

March 2, 2009

And welcome finally to Part 3! This is the continuation of our series “What’s Your Autistic Toddler Like Now?”, a journey through what’s happening these days in the life of our autistic 3 1/2-year-old son and sequel to our very popular original article, “What’s Your Autistic Toddler Like?”. I meant to write this sooner, but [...]

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How Much is a Bed Worth?

February 9, 2009

One of the bazillion transitions we have to think about on the road to Baby #2 is what to do about the fact that the J-Man is still sleeping in the crib we planned to use for the new baby. The original idea was to convert his crib into a toddler bed (we have the [...]

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