Sunday, August 4, 2013

Catching up on ADHD news

I was on vacation. Well actually, I was on vacation the previous week and spent this past week being exhausted, because long road trips apparently wreck you when you have arthritis, even if you take your lumbar pillow with you because you have become an old fart. I'm going to have to change the name of this blog to "Angry Old Mom With Arthritis."

We went to the circus at Lake George, and then left the kids with MIL (thanks, MIL) and went to Burlington, Vt., overnight. It's a lovely place and totally crunchy. Vegan everything. Sarongs for sale everywhere. Extensively used bike parking. A ton of breweries seemingly. (I'm guessing that's a necessary thing in the winter.) We also hit up the Ben and Jerry's factory tour, and I guess we should've felt guilty about doing that without the kids, but uh, no.

Anyhow. I'd still like to weigh in on the FDA approving the first brain wave test for ADHD a couple weeks ago. The test involves an EEG and sensors hooked up to a child's head, and measuring the brain waves, which appear differently in an ADHDer. The FDA says using the test helped doctors make a more accurate diagnosis. The commenters on the Times article, of course, are saying various variants on "The FDA is ripping people off and all psychiatrists are snake-oil salesmen and parents should let their kids be kids!" (paraphrasing, of course), rebutted by the adult ADHDers and parents of ADHDers who say, "Oh yeah? You deal with this for a while and see if you think it's made up." So, the usual back-and-forth then.

Then ABC had this story about experts' skepticism about the validity of the test and their belief that they can diagnose just fine on their own, thank you very much. Sorry -- two experts' skepticism. I guess all the others were busy. Anyway one of them said this about general practitioners using the test:

"They can charge for it and it gives you a pseudo-scientific basis for the diagnosis – a piece of paper with little wiggles and you can say they're not the wiggles you expect," she said, adding that she hopes parents "understand the limitations of the test" and "realize they don't have to rely on commercial promotions."

The company that makes the test, says this article, is a tiny start-up in Georgia and they've been working on the test for seven years. The (uninsured) cost to parents for the test would be $300, it would take about an hour and the company's president said they're looking to sell it to clinicians and hospitals. He also said the ABC News article hurt, and called it misinformed, adding:

"While there are some upfront costs, NEBA is worth it because of the increase in accuracy it brings the clinician and the overall costs associated with misdiagnosis."

Here's the thing. I don't especially expect the test to be perfect. I don't have any especial need to have my son tested. (Believe me, we already know what he's got.) But I'm glad the test is around. Because if there is such a test, and it works at all, then people can't keep snarking that ADHD is made up and blame kids' behavior on lousy parents, incompetent teachers and money-grubbing psychiatrists. A test takes the emotion and knee-jerk moralizing out of it. A test puts things on neutral ground.

The other piece of this is, and I've said this before, that general practitioners shouldn't be diagnosing. They don't have the experience, they're probably not up on the research and, at least in my experience, they're way too quick to throw a pill at a problem and move on with their lives. Medicating ADHD, which I'm generally in favor of as necessary, is a fairly delicate process -- finding the right drug at the right dosage, figuring out how to handle the side effects -- and that's a specialist's job. It's such a fraught topic, and causes parents so much angst, that it shouldn't be the automatic solution. It should be the last resort after other methods -- OT, behavioral therapy, classroom accommodations -- have been tried. Yes, that takes time. So does doing anything right.

And frankly ADHD is on occasion misdiagnosed, per my various readings. Sometimes the child actually has bipolar disorder. Sometimes it's purely sensory processing issues and not hyperactivity/inattention at all. Some of the things my kiddo does, a child with Asperger's would also do, or a child with SPD. So getting to the right conclusion is crucial. The wrong diagnosis means the wrong treatment, means, most likely, the wrong medication and then a worsening of the situation. Anything that could prevent such an outcome is welcome, as far as I'm concerned.

Though I will note that $300 is a lot of money and it would be nice if that cost could be offset somehow to ease the burden on families. Offset by insurance, say.

In other news, that Charlotte Observer series appears to have reached its conclusion. And it's a lovely conclusion. The writer (actually guest blogger on the paper's website), in part, said this:

"I realized that my son John, my forever challenging son, had immeasurable gifts, maybe some as a result of his unique brain. As I reflected on his perpetual insights about people and behaviors, I knew that if I could just safely guide John to adulthood, he would do great things."

Well, yes! I think kiddo will too. He's smart, he loves telling stories, he's totally charming (he has dimples. Seriously), he builds fascinating things with Legos, he's sensitive to other people's emotions, he's wonderful around babies. He plays very nicely with his little sister, even though their "playing" sometimes consists of bonking themselves into the (closed) basement door, falling to the floor and yelling "Ow!" then giggling and doing it again. Yes, really. I figure they're not strong enough to give themselves concussions. (This is still an improvement over their previous game, in which they said to each other, "Let me smell your foot. Eww!" "Let me smell your foot. Eww!" Honestly. They are like the world's littlest fraternity, minus the beer.)

And they appear to be awake, since kiddo has unlocked the gate and I can hear them chattering downstairs, so that would be my cue to go give them breakfast.

Read more here: http://www.charlotteobserver.com/2013/07/30/4200702/life-as-a-mom-of-a-child-with.html#storylink=cpy
  

3 comments:

  1. You should just stop reading The Times, I cannot think of another "newspaper" I have such disdain for. I wouldn't wipe my butt with it.

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    1. I wasn't even trashing the Times this time, I swear.

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  2. I will trash those creeps all day long. They are biased. I have zero respect for that paper.

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