Omega-3

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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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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[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. I have no idea. I am not one to attribute improvement to any one thing with certainty without hard data to back it up. And in this case, I don’t have any data to support that his speech improvement this week has anything to do with his Omega-3 / fish oil for the last few weeks, so take it for what it’s worth.

Last night he had the best string of speech and communication we’ve gotten in forever, and that’s saying something after the great week we’ve had. This has definitely been his best speech week.

Last night – without any prompting from us other than “What’s this?” and some pointing – he identified his nose, mouth, eyes, neck, and ears, all right in a row! It was ‘no-no’, ‘mow-mow’ (rhymes with ‘cow’), ‘eye-eye’, ‘neh-neh’, and his version of ‘ears’ that is consistent but pretty far off from the actual word, but it was clear what he meant. Yes!

Then came the big finish. Clear as day, “I love you.” (‘I-luh-you’) After a rough day with a melted hard drive and an endless string of personal and work crap to deal with, what an incredible gift! He pretty much melted me where I stood.

I’ve read several books on speech and speech therapy, and I’m not a bit surprised that the goal of many parents in situations like ours is to hear their kids say, “I love you.” It’s impossible for us to take anything like that for granted every time it happens. J-Man has been walking for about eight months after not doing it for almost two years, and I still feel joy watching him run. I know how hard he’s worked at everything, and every little thing is still an achievement even after he does it a few hundred times.

I’m writing this and I still get choked up about it. I am so proud of him!

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Omega-3 Watch – Week 3+

by Tim on March 13, 2008

It’s been 3+ weeks on the fish oil now. It’s probably still too soon to determine what, if anything, it’s doing. And this week hasn’t been ideal at all for making any judgments. He’s felt like varying degrees of dirt for most of the week, and everything usually takes a step backward during weeks like this.

Here are a couple of things I’ve noticed improving lately, though whether it’s attributable to fish oil or what he would normally be doing is hard to tell.

* Eye contact continues to improve
* He did really well with his new OT, so score one for comfort with strangers
* He’s following some instructions a bit better
* He’s asking for things with ‘more’ on his own without as much prompting
* He goes to his high chair when he’s hungry (or drags the chair around with him) – i.e. the high chair is a good place
* His tantrums, at least in my opinion, have actually been better the last several days, though I didn’t think they were that bad to begin with

Odd mannerisms of the week:

* He REALLY likes Jeopardy
* It’s not unusual for him to refuse to get OUT of his high chair – a problem we’ve never had

We’re just going to write off the downers for the week as due to him feeling ill (a lot more sensory defensiveness, decreased speech) and move on. We’ve cut back on the ‘homework’ this week to let him recuperate. This round of yuck has been short-lived for his usual coughs and colds (which are fairly rare anyway), so that’s a good sign.

Let’s hope next week gets us back on track.

For previous installments:

Day 14
Day 7
Day 1

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Omega-3 Watch – Day 14

by Tim on March 4, 2008

What a difference a week makes! J-Man has gotten into his medicine groove with the fish oil! This has been the ritual with everything else he’s taken in the past – several days of karate and fighting it and then a grim acceptance. He never likes it, but makes his peace with it. Of course, none of his other medicine smelled like a fish camp.

So it looks like that part of the equation is good for the duration. I can’t say as we’ve seen any major improvements, though it does seem that his eye contact and interaction are getting better. As Mary says in the above post, we may be seeing a trend toward improved communication!

Again, this is by no means a scientific report and we don’t have any foolproof method of charting his progress. We don’t have any standard by which to measure what ‘success’ means here either. I guess we’ll just know it when we see it.

For me, “I love you, Daddy” will be more than enough.

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Omega-3 Watch – Day 7

February 25, 2008

What started out as a manageable-enough process of giving him fish oil in an oral syringe turned into full combat after the first couple of days. If I knew a martial art it might have been easier, but I doubt it. The last couple of days have been a bit better – a relative concept. [...]

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Omega-3 Watch – Day 1, Take 3

February 19, 2008

We’ve read and been told by a handful of people that giving kids with severe speech delays (and other developmental issues) fish oil supplements can make a world of difference. Sometimes we wonder about the wonder-drug-like claims made about Omega-3 fatty acids, but at this point we’d face a strong north gale and pee into [...]

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