Saturday, January 31, 2009

How do you know when to make the switch?

I really think that my son, E-Niner, could use a work-up of his medications. Our Ritalin regimen doesn't seem to be cutting it -- he's got a very severe case of ADHD.

And when I say very severe, I mean to say that it was apparent at four months old when he looked like a jack rabbit in heat trying to get himself from his belly to all fours.

Four months. We didn't think we had a problem. We never saw anyone else's kid do that. But we were in that blissful new-parent, first-child mind-set that allowed us to believe our child was a superior being.

At ten months old he was flinging those giant, economy sized boxes of diapers around our family room. He'd hold the box over his head throw it, and then run to the other side of the room to pick it up and do it again. Ten months.

I could proceed with the litany of milestones and warning lights we missed, but you get the point. Fast forward to five years old, two school expulsions, and one psych ward visit later.

He's out of control in the mornings before we give him Ritalin. He's a mess in the evening when it comes out.

When I say "out of control" and "a mess," I mean to the point that our family has now separated in half during those times (one of us feeds him, the other hangs out with our other son) because adding just two people in the room over-stimulates him.

So I've been thinking about switching up his Ritalin to Strattera. I hear they make a dose that lasts for 24 hours, which sounds wonderful. (We've tried long-acting stimulants in the past, but his crashes off those, even with a tiny dose of Ritalin to ease him off, were literally 911 unbearable.)

Anytime we switch-up his meds -- and by meds, I mean Ritalin, Seroquel, Depakote, Clonidine -- it's like an enormous earthquake sets off in his body. There is part of me that feels very nervous of this idea of switching to Strattera.

First, Strattera works in a different part of the brain than Ritalin. So who knows if the drug will be as effective for E-Niner. So that's that whole headache.

Next, I'm worried about it suppressing his appetite. The number one thing kids need to do at his age is eat and sleep. Eating has been an uphill battle since he started Ritalin since he's on it eight consecutive hours a day. That's eight hours of not eating. What if a 24 hours dose suppresses his appetite that long? It's not like you can reason with a five year old.

Then I'm worried about it not working, which means that his safety, our safety and the state of our house and property are all at stake.

At the same time, what we've got going around here isn't working too well either.

I hate this about medicines. It's like you're running these high school science experiments that are iffy at best. Try it, see if it works, if it doesn't try something else.

I hope someday -- in his lifetime -- prescribing mental health drugs won't need to be such a coin toss.


  1. I don't know if my experience can help you, but....
    My son, who has moderate ADHD, takes Concerta daily during the school year so he can function. It supresses his appetite, but he is manageable (albeit only by me and his dad) without it, so on weekends and long holidays, we take him off of it and then he eats like a normal 7 year old boy (everything but the table legs). So far, that has been a good compromise for our situation-but does not sound tolerable in yours.
    My daughter, whom you have "met" through our discussions, was prescribed Strattera earlier in the school year. We tried it, hoping it would increase her attention span. A half dose was too much-it put her in zombie mode. a half, half dose was good, but it didn't help enough for us to justify putting her on meds at this point in her life, so we stopped. There was an observable supression in appetite also, but no weight loss.
    But, one thing we noticed with Strattera was that there wasn't as severe a withdrawal kickback in the evenings, as with our son's Concerta.
    My opinion, having dealt with both meds is that it could be worth your time to investigate Strattera.

  2. Have you tried any OT? My son is on a very small dose of concerta and is doing OT too, and the heavy work and other activities really help calm and ground him.
    I totally understand what you say by SEVERE case of ADHD.
    Is he currently on atypical antipsychotics?

  3. Our family separates in half for much of the day. Usually mornings are just me and the kid. Afternoons are dad and the kid. Evenings are me and the dad after the kid goes to sleep. All of us together is overstimulating for the kid, but more importantly, overstimulating for me. :-) It can be really hard living this way.

  4. Yes. Anti-epileptic drugs are the same crap shoot. I wonder if we'll look back on these days and think of them as barbaric. I'm hoping so...

  5. I totally understand too......or at least I"m beginning to, since we're traveling down the severe ADHD road too. *sigh* My little guy is almost 5, on Focalin, and just went from 2x/day of the short acting kind to 1x/day of Focalin XR. I just nodded my head to the "coin toss" analogy. And we do that splitting up action too, especially in the mornings while getting ready for school (and evenings too, depending on what's going on). My older son is on the spectrum (asperger's), and gets overstimulated/irritated at the little guy's can see the obvious problem. Wish I had an answer, for any of us.

  6. I think the most you can do is find a physician you trust.
    I posted on parental decisions regarding medication last week. The title is "I listen to opera".

  7. Thanks everyone for the feedback. I really appreciate those who spoke up to say that they too "divide and conquer" during the mornings and evenings! I had no idea that other people were doing that too.
    And I completely agree that trusting your doctor is key.

  8. It is all such a tenuous balance. Hard to tell if the risk will be worth it in the end. Good luck.

  9. We are coming off of one year of med. balancing (9 yr. old w/TS, ADHD, cog impairment but maybe that's the TS and ADHD talking, dyspraxia and anxiety). Strattera was our best hope b/c it doesn't aggravate the TS tics) and might've helped the anxiety to boot, but his stomach just couldn't tolerate it. And this is a child who had reflux and a host of GI issues til age 8, so we didn't need more stomach problems.
    We've since tried Concerta, Metadate, Strattera (again), Focalin and are back on Concerta. Plus he takes Tenex 2x day for the Tourette's. I think SO much depends on your child's brain chemistry and metabolism, and yes, having an MD you trust, to tinker around with it all. We're lucky that way, though for many years I was resistant to meds. Then we just got TOO exhausted, and our house was getting destroyed in the process and our son was suffering as well.
    Good luck! I hope the Strattera works out, really! And it's easier to refill since it's not a controlled substance.

  10. Thanks Tracy. We have decided to try Strattera as an ADDITION to the meds. Not instead of Ritalin. Maybe it will help him focus a bit better, and maybe we can decrease the Ritalin a bit. We'll see how it works out. I'll definitely keep everyone posted.

  11. Oh, got it! Well, we just added a Ritalin (5mg.) chaser in the afternoon b/c the Concerta 18mgs. wasn't enough (but 27mgs. was too much). So far so good but it's only been 4 days.

  12. I just wanted to give you a potential resource if you hadn't heard of it: HANDLE.
    This program has been significantly helpful for children with symptoms you are describing in your son - hyperactivity, impulsivity, aggression, etc. - it's a program which helps integrate the nervous system, but it's not like traditional OT. I wish you and your family the best, and hope you do find something that will improve your son's (and the whole family's) quality of life.

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