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Dance of the ADHD Meds, Part II

September 12, 2011

In Which We Try to Find One That Works with Minimal Side Effects

Let me say right off that if your child can already swallow pills whole, you may find your journey quite different from ours. The drugs that are currently most widely prescribed for ADHD are fairly new: lab-engineered versions of older drugs fine-tuned to meet the demand for longer lasting meds with fewer side effects. Most meds that are effective for 8 hours or longer are engineered to be time-released and must be swallowed whole to maintain that property.

That knocked Intunive (the long-acting form of Guanfacine), our doctors first choice, out of the running for Hope. After two weeks of trying, we’d only worked up to her being able to swallow a cake sprinkle without chewing it about 50% of the time. For Hope, swallowing anything whole seems to be a sensory issue, not just a matter of learning the mechanics. Surprisingly, I talked to the feeding-specialists (occupational therapists) at our clinic and at our local children’s hospital and there is no protocol for teaching children to swallow meds (although you’ll find lots of ideas in the Internet).

Our next stop was a short-acting drug that could be crushed or chewed. Hope’s psychiatrist suggested Adderall because the taste is not offensive. I tried a bit of it crushed myself and found it to be a bit chalky in texture, but slightly sweet with no other tastes. Hope took it without complaint and said that she couldn’t even tell it was in there when I mixed it with chocolate pudding or yogurt.

One other issue with giving short-acting meds to young children: the dosage, which is based on body weight. Hope weighs 42 pounds, which required a tablet so small that I had to call around to find a pharmacy that carried it. Then I had to split the pill into halves and quarters to make it appropriate for her body weight.

If you go this route and don’t already own a pill-splitter, get one. It’s a specialized gadget involving razor blades. Yes: razor blades and FASD/ADHD don’t mix. But if you don’t already have a locking box for your household meds, you will want one to lock up your collection of ADHD meds and can stow the pill splitter in the locked box.

Hope’s first few doses of Adderall made her dopey. Then her body adjusted and we liked the effect. The problem was that the sweet-spot in coverage lasted about 3.5 hours, but we could only give it every 6 hours. And by 4.5 hours into the dose, Hope had rebound –symptoms that are worse than typical. It felt kind of crazy: in exchange for 3.5 great hours, we got one typical hour followed by 1.5 hours of biting, raging, melting down over anything. Over and over all day long as we cycled through doses. And we could not give her any after 4:00 PM or she could not fall asleep until midnight.

At that point we were saying, “No medication at all is WAY better than this.”

Then I read that  Adderall XR comes in a capsule that can be opened and dumped in food without destroying the extended-release properties. I called up her doctor and tried very hard not to say, “…and why didn’t you tell me there was an XR form that does not need to be swallowed whole?!” Instead I sweetly asked if we could try it.

Adderall XR, for Hope, was everything we’d been hoping for –with the exception of the side effects. The first major hurdle was her appetite. The full dose dispensed from the capsule suppressed her appetite so far that she began losing weight. The problem with adjusting the dose on an encapsulated med is that the teeny-tiny pile of hundreds of micro-balls is almost impossible to divide. But I was motivated by how well it worked and figured out that after I had the micro-balls homogeneously mixed into a teaspoon of applesauce, I could throw away a dash of the mixture and have her take the rest. A dash less worked just as well, but left her hungry enough to eat.

Then the insomnia started creeping in. I take it that this was a little unusual six weeks into the course; that insomnia is pretty common the first few days, then abates. Because we didn’t see it coming, we spent almost two weeks hoping the insomnia was due to something else –perhaps anxiety with school starting and the prospect of moving to a new house. But upon longer consideration, “medication side effect” was the leading theory. Hope’s psychiatrist agreed and backed up our feeling that as much as we liked the Adderall XR, we should try something else.

The next med up was Guanfacine –a blood pressure medication that showed so much promise controlling hyperactivity that they developed a long-acting form called Intunive specifically for ADHD. Guanfacine can be crushed and Hope likes it best in chocolate ice cream. We chose to try it next specifically because sleepiness is a side effect and after Hope’s run of insomnia we needed to recover some sleep. But it has had the opposite effect of Adderall XR: it helps her sleep all night, which for Hope is amazing. But it doesn’t make much of a dent in her daytime symptoms of ADHD.

So three months into our quest for ADHD medication, we’re still looking. That’s not all bad. By trial and error God is showing us some of the finer points of Hope’s neurology. Our success on Adderall backs up our opinion of the specific type of ADHD Hope seems to have, which means that in the big picture, everything we’re learning makes sense.

But we’re not yet where I hoped we’d be. Tomorrow, with the permission of Hope’s psychiatrist, we’re trying a new combination to see if we can balance daytime gains with nighttime sleep.

So I’m going to bed early. And I’m praying for God’s favor.

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One Comment leave one →
  1. September 13, 2011 10:31 am

    Thanks Carrie for sharing this..it is so helpful 🙂 Praying for some good answers for you!!

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