Supplements

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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Seasonal Affective Disorder and Autism?

by Tim on November 13, 2008

This is that time of year when the days are beginning to feel really short and the decreased sunlight starts to get to me. I am a clear winner in the Seasonal Affective Disorder (SAD) race and have a light box on my desk to help that along. (In case you’re interested, I have the SunBox DL because it actually doubles as a nice desk lamp.)

Today was chilly and rainy and completely cloudy and pretty much parked me squarely in the blah zone. Half a pot of coffee, loud music, well not much seemed to help. To say I wasn’t very productive today is an understatement.

I picked J-Man up from school and they said he had been pretty foggy all day too. He didn’t seem really upset today or anything, but he wasn’t his normal bundle of wild energy either. They said he was just kinda there all day. That sounds familiar, and it got me thinking.

Is there any greater probability that an autistic person would also have Seasonal Affective Disorder than the general population? I looked around on the Internet but no one seems to have done any real study on that.

He may have just inherited that from me and it’s essentially coincidence that he’s also autistic. I am curious, though, that given the number of parents who give their autistic kids some melatonin to help them sleep and that research indicates that it’s likely that the lack of sunlight that brings on SAD is because of decreased melatonin production in the body, is there some sort of relation here?

I could be talking completely out of my ear here (well, I know I’m doing that), but does anyone else have the experience of their kids being kind of foggy, mopey, lethargic, or whatever in winter vs. summer? Does their behavior change in general as the seasons do, and if so, does it change for the worse or the better? (though ‘worse’ and ‘better’ are highly subjective in our world) If it did, did you do anything to try to address it? I’m not about to put an autistic kid in front of a light box without a lot of supervision considering that much light can make some people suddenly really hyper. That could turn into a big mess if you’re not careful.

This is our first post-diagnosis winter. I honestly didn’t pay attention to how the season changes affected him last year beyond the clockwork allergies we all have.

Today just got me wondering and I’d love to hear y’all’s perspective on this.

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Fish Oil and Omega-3s – The Sort of Final Verdict for Now

by Tim on August 17, 2008

We haven’t written about our fish oil/Omega-3s experiment in a while. (To catch up on the backstory, view all of the posts tagged Omega-3.) This is mostly because we keep waiting for some revelatory event to help us determine one way or the other whether it has made an obvious difference in J-Man’s progress, particularly with respect to his apraxia and speech development. I’ve read studies that suggest it provides noticeable improvements to other autism-related issues as well, so obviously we’ve been paying attention to that as well.

I noticed that today brings us very close to the six month-aversary of starting fish oil with J-Man. To be honest, I can’t tell an appreciable difference between what I would expect his improvement would have been without it and what it has been with it. Obviously this is hardly a scientific experiment, so take it for what it’s worth, but it’s pretty clearly not been a miracle solution or anything.

Am I disappointed about this? A little. Speech feels like our biggest hill to climb and the one area around which so much of our emotional energy goes. His growth has been slow and steady, but he’s still coming out 18 months or more behind on speech evaluations. Relative to his age, his behind-ness hasn’t changed much since we started the fish oil.

Do we plan to stop using it? No. I’m fairly convinced that fish oil has benefits to our bodies in many areas. I take it myself and think it’s an important part of the supplements and vitamins I take. It isn’t doing him any harm, and perhaps it’s giving him some positive benefits that we can’t readily see.

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The Fish Oil We Use

by Tim on May 21, 2008

Someone asked us what brand of fish oil we use for J-Man. It’s Nordic Naturals Children’s DHA. This isn’t so much the result of extensive brand shopping, but rather it’s what Whole Foods had in stock that satisfied some basic requirements.

Upon the recommendation of one of his therapists, we decided to try fish oil based on research that it has helped some autistic and children with speech delays or apraxia. “Helped” was measured primarily by improved cognitive testing scores and speech usage over a 90-day period. Because of its widespread use (I take capsules myself) and researched benefits for a variety of things – not to mention there doesn’t seem to be any indication that it does any harm – we decided to give it a try.

There are a lot of questionable products and practices out there involving supplements and other related treatments for autism. Fish oil seems at worst benign. First do no harm should be the rule for everything we try for our kids.

I don’t recall exactly what we paid for it, but 4 fl oz bottle of this brand (it’s berry-flavored liquid) should run about $14-15; an 8 oz will run about $25 or so. By my rough figuring, this is about 50 and 100 doses respectively. A dose is 2.5ml or 1/2 tsp.

From their product page, one dose contains:

EPA: 205 mg
DHA: 313 mg
Other Omega-3s: 113 mg

500 ish milligrams for EPA + DHA appears to be a fairly accepted sweet spot for fish oil for autistic and speech delayed kids in the couple of studies I read. Keep up with the research as best you can to see how this evolves. Largely they are taking educated guesses at this point.

Here are the requirements we set when we looked for fish oil:

  • It had to be as pure and free of toxins and crap that are in low-quality fish oil as much as humanly possible. (generally this is down to fractions of parts per zillion)
  • It had to be in liquid form because of J-Man’s severe oral defensiveness and lack of interest in eating anything weird or having it mixed in his food.
  • It had to hit that 500 mg ‘sweet spot’ (see above).
  • A dose had to involve 1 tsp or less of liquid (i.e. 5ml or less) because giving him much more liquid than that in an oral syringe is extremely difficult. Hell would freeze over before he took liquid medicine from a spoon.
  • We had to be able to get it fairly easily and not order it from Outer Mongolia.
  • It had to not taste or smell like fish ass.

The Nordic Naturals stuff succeeded on all but the last count, though I don’t readily know what a fish’s ass tastes or smells like. I imagine liquid fish oil is a close approximation if nothing else. We realized pretty much no product is going to taste that great. I put a little on my tongue and found it tolerable. Mary found it disgusting, but she has Super Sensitive Nose so there was no hope there to begin with.

An important thing to note about this and other fish oil products is that many of them also contain Vitamin A. If your child is getting a significant amount of Vitamin A from other sources and supplements, be aware of this. Vitamin A in higher than recommend doses can be toxic. If you decide you need to give your kid a double dose to get to that 500mg point, make sure you aren’t doubling the Vitamin A into an unsafe range.

Like I said, fish oil in any non-capsule form – which is the fate of most of us with younger kids – can easily taste and smell like Charlie the Tuna’s feet, or worse. Even in its other ‘child-friendly’ forms (flavored chews, mix in their food type stuff, etc.), it’s pretty unpleasant. The feedback I’ve read is that fruit-flavored versions are generally the most palatable. One brand I saw somewhere has chocolate-flavored chews. Just thinking about this sends me running for the mental floss.

Here’s a link to the Nordic Naturals product page, if you’re curious. I get nothing out of this if you buy some, in case you’re wondering.

Standard disclaimer: Talk with your doctor, therapists, and other qualified professionals before giving your kid anything. I am not qualified to tell you anything other than what we are doing with our son. I’m not endorsing this brand nor are we advising you to give your kid fish oil nor are we claiming it will help your kid at all nor am I claiming that superstring theory is correct. With autism, there’s so much we don’t know. Treat all advice you get from people with that principle in mind. A recording this is. Yoda, yoda, yoda.

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Parental Validation

by Mary on May 1, 2008

We took J-man to the doctor yesterday for a physical. The county requires one as part of the paperwork to get him into the school system setting, versus the Early Intervention setting. The office did very well getting us in on time, but the J-man was NOT HAPPY about being there. He certainly knows that the doctor’s office is rarely a fun place for him.

While we were there, the doctor talked to us a good bit about what we were doing in terms of therapies and the like, and what our plans were for the near future. We told her about the special preschool J-man attends, and his speech, developmental, and occupational therapies. We talked about food, and how what he eats is limited by his sensory issues, and she gave us a few tips about getting some extra calcium into him.

She seemed pleased at the progress he is making, and understanding of how far he has come, although he’s still delayed in most areas. J-man wandered around during that portion, so she got to see him not freaking out… and called him adorable. (Of course she did. He IS adorable.)

Then she said, “It’s so great that you are doing this now when he’s
so young. The earlier the therapies start, the better the outcome usually is. You guys are doing a great job.”

It was nice to hear that. It’s especially nice because I never feel like I’m doing enough, but I also have to have a life too, so I’m constantly pulled in two ways. (Or seven…)

When we were finished, and J-man was all dressed again, she asked him if he was ready to go and get in the car. He looked up at her and raised his arms, and said, “GO CAH!”

Go man go!

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Speech Improvements Galore – Fish Oil, Speech Therapy, Both, or What?

by Tim on April 23, 2008

J-Man has made huge leaps forward in his speech lately. This is all relative and he’s still way behind for his age (almost 2 yrs. 8 mos. and is probably close to 18 months behind), but for him this has been a quantum leap forward the past couple of weeks.

For a bit of backstory:

As you probably know, severe speech delays (or non-existent speech) are one of the pillar symptoms of an autism spectrum disorder and are probably the most straightforward way of differentiating autism from Asperger’s (all other things being roughly equal).

ASD kids tend to fall into two general groups: those who never really developed speech or developed it very slowly, and those who had normal speech development and then ‘lost it’. I know next to nothing about the latter and am not going to get into the debate about what brings that about. J-Man falls pretty clearly into the former group, so I’ll talk about what I know.

He has gained and lost some syllables over time in the past, but that problem seems to have faded away now. He’s retaining most of the syllables he’s picking up, which is wonderful. I know it’s not uncommon for kids with apraxia to have ‘lost speech’ problems, and that seems to be the case with him.

For example, about a year or more ago, he said ball (‘bah’ or ‘bah-bah’) and duck (‘duh’ or ‘duck’ with a very soft ‘ck’ on the end). After doing that for a while, we haven’t heard them much at all since, nor anything else that starts with ‘b’ or ‘d’. One of our therapists said that speech for kids like him has a hard time “locking in” and that this will happen.

Instead of thinking of it as having speech and losing it, it made a lot more sense for his therapies to look at it like him maintaining this sort of Law of Conservation of Total Syllables. On the whole, his total number of syllables remained about the same or increased very, very slowly, but I wouldn’t say he ever regressed for any length of time. This helped us chart his progress better and stay more positive about it. That whole situation was weird to us, but the apraxia diagnosis made sense and still does.

One things he’s done for a long time that is both fascinating and frustrating is that he will out of the blue say a syllable he rarely if ever says (like ‘sh’ or ‘ffff’ or ‘ts’), will do that for a minute or less, and then we won’t hear it again for weeks. Apparently this is also common to kids with apraxia, which is itself common for kids with an ASD.

As our readers likely know, we’ve been giving him fish oil for about the last two months. Within the last couple of weeks, we’ve seen marked improvement with his speech. As I said in my last Omega-3 Watch post, I hesitate to put those two sentences together as I have no hard evidence that the fish oil caused the improvements. We have also been focusing on speech therapy intensely at home during that time, and that (or both) could be bringing this about. We don’t know, but we’re going to keep doing both.

What I am convinced is helping tremendously is his patience level. As we’ve been able to withhold things he wants for longer periods of time until he asks for them in some (or any) verbal way, his speech level has improved drastically. It used to be that he would fall apart a half-second after you held something back from him. As that time got longer, things got easier, albeit with not a lot of speech improvement. In a few seconds, he would just get so flustered that we’d lose him. It seemed to me that he was so frustrated that he couldn’t say the word that he got upset.

As his ability to tolerate this withholding has gone up and his patience with himself has increased, this process has gotten much easier. They told us a year ago that this would be the cornerstone of his speech therapy; he had to be willing to be patient and have the ability to tolerate frustration to have a breakthrough. They were right.

They’re basic line: “He has to be ready to do give-and-take or else speech therapy won’t help.” Yep. And all that effort we’ve put into accomplishing that has really paid off.

Here are past and present examples.

Before:

Me: Would you like more to drink? (pause a second and withhold the cup)
J: (nothing, but is looking at me)
Me: More? (pausing a second or two)
J: (nothing, but looking more distressed, maybe reaching toward the cup)
Me: Can you say more?
J: (getting more agitated, whining, no words)

Repeat this a couple of more rounds and he’d get upset and whiny without saying anything word-wise.

Now:

Me: Would you like more drink? (or more cup) – pause a few seconds.
J: (looks at me and the cup but may not say anything in this round)
Me: Do you want more cup? (pause a few more seconds)
J: (Looks for a couple of seconds, then) Mo-mo. (what he says for ‘more’)
Me: More what?
J: (readily says) Kuh-kuh. (what he says for ‘cup’)

Then he gets the cup and drinks. That exchange probably takes about as long as the first one, but he’s expressed his needs verbally, gets what he wants, and we go forward and keep eating.

Interestingly, if he doesn’t really want more of something, he usually just refuses to say it.

This is a quantum leap forward for him.

With apraxic kids, the ability to have your own parental self-control and patience to wait calmly along with your child’s ability to be patient enough to plan out the words and talk are crucial. Our natural tendency is to repeat things quickly or give in. It’s hard to fight that, but J-Man has done much better if we give him several seconds or even longer to think about what he wants to say and plan out how to say it. Now that he’s patient enough for that and we are too, things are going more smoothly.

The benefits of this are carrying over to other therapies as well, so this has been a real positive for him. Yay, man!

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Omega-3 Watch – Week 6-7ish / Look Who’s Talking!

April 6, 2008

[ed. Hard drive meltdown = no blogging. Ack!] We’re behind on Omega-3 / Fish Oil Watch posts. It’s been a rough couple of weeks, as we’ve covered. I put ‘Talking’ and ‘Omega-3′ together in the post title with no small amount of uncertainty as implying that they are related may be a very big leap. [...]

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The Information Fire Hose

March 29, 2008

(Buckle in. This is a long one.) One thing we’ve already figured out is that once you get an autism diagnosis, whatever the secret code is for the Autism Parents Underground Society gets embedded in you like the security tags they use to keep you from stealing stuff from the store. The big positive with [...]

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