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Instability »
We've been playing the medication shuffle with J's medicines for months (years?) and it just feels like it will never end. In fact, it might not. In October we stumbled upon an unconventional, but effective, medication combination. We had high hopes that we'd finally found the solution – but, like every new protocol, the success was short-lived. Every new protocol we try works. Until it doesn't, that is. It'll work for a few days, a week, a month… but never for long.
In some ways, life before a diagnosis was easier. Before we knew J had ADHD, he was just… J. Before he'd ever been medicated effectively, we didn't know how much easier it could be. He was just J. Once we'd had him effectively medicated, the times when he wasn't well medicated became unbearable. I'm not clear if it's because the ADHD etc. has gotten progressively worse or we've just become less accustomed to it. I think it's actually a bit of both.
It's no secret that we've really struggled with J's medication protocol. Medications nearly always work, but we always, always hit a wall – either he'll start refusing to take it, or he'll still take it, but it ceases being effective. It's frustrating, because it's easy to believe we're just not on the right track at all, but we're also a bit at a loss for what else to try sometimes. We've had to "think outside the box" a lot more than any of us are comfortable with, including our extraordinary developmental pediatrician. We've spent a long time dancing around it, but ultimately decided it was time to add in a neuroleptic and see how things go from there. But, cautioned Ye Old Developmental Pediatrician, it would be prudent to seek a second opinion. He pointed us to an excellent child psychiatrist from the National Institutes of Health (NIH) National Institute of Mental Health (NIMH). He didn't have any super-genius rats in his office, but from what I understand, he's one of the foremost experts in the field and has written much of the research literature out there relating to the issues we're dealing with. He also, apparently, has a reputation for shying away from neuroleptic medications for children because of the side effect profiles, and he definitely "thinks outside the box" and uses therapies that might otherwise be considered unconventional, but has had great success with them.
I was really pleased to be able to get a series of appointments set up with him very quickly after I contacted him. I gave him what I thought was an unnecessary warning that there was always the possibility that I wouldn't be able to make it to some or all of the three appointments we'd set up since I was having a complicated pregnancy. We had a parent-intake appointment, an appointment for J, and then a third appointment to get his recommendations all set up. And… of course I got admitted to the hospital the day before the parent-intake appointment. J, unfortunately, was simply deteriorating too quickly to postpone until this pregnancy calms down (e.g. after delivering this baby!) , so Seth went without me. I figured I'd for SURE be home before J's appointment – five days later. Nope. Missed that one, too. I sent the doctor a very long, detailed email with J's history, including the very little that we know about his prenatal and early infancy history. The doctor said that it was so helpful and thorough that we almost could have done away with that first appointment. Truthfully, I'm not sure that I could have written it as thoroughly as I had if Seth hadn't told me what kinds of questions the doctor had been asking in the first place, so it's unlikely that we could have skipped that first appointment (and $300!!) if I'd been able to pull it together sooner. (it was a really, REALLY long email!)
But I was finally able to make it to the final appointment with the doctor. He was extremely nice, very thorough and helpful. It was really great to talk to him and I'm glad we got his input.
I will say that any time we speak with a new specialist, we have this hope in the back of our heads that we'll hear "Well, Dr. & Mrs. Perky, you're clearly doing everything wrong. If only you do these things differently, everything will fall right into place!" I mean, really, that would make our lives a lot easier, right? I could handle being told that I'm approaching this parenting thing all wrong, if only it would make it all easier. Hah!
I shouldn't be surprised that we didn't have that "eureka!" moment – but I still wish it would happen some day. What we heard, instead, is that we're doing all the right things. He reinforced that J is very lucky to have us (we're very lucky to have him, so it's all fair). He said that the medication protocol we're on is exactly what he would be doing, but suggested being cautiously more aggressive with dosing. We had started J on Abilify just about the time that we set up these consultation sessions, but we were on a pretty low dose. He was pleased to hear that we'd already moved the dose up, and suggested that we'd probably need to raise it more than once. He did, however, note that Abilify often has a "ceiling effect" – where the drug will work for a while, but then gets to a point that it's not working well enough and raising the dose doesn't change the effectiveness (just increases the side effects). He had a few other suggestions if the Abilify doesn't work in the long term, but he felt that it was a good option at this point. We're not seeing any significant effect from the Abilify – but it's still early and we're still at a pretty small dose.
Once we get the Abilify dosing set, he recommended tweaking the Prozac dosing, and then moving toward augmenting the ADHD medications – they work pretty well, but wear off far too early in the day for J to really be successful. J is what you call a "fast metabolizer" which is okay, but does make it difficult to keep him optimally medicated, particularly when he is so non-compliant about taking medicine in the first place. The Child Psychiatrist noted that there are no pharmakokinetic studies in children, only in adults. His experience, however, is that any XR (extended release) formulation of these medications don't work as well with children as they do with adults. I quite agree, but our hands are a bit tied on that one, because we have to maximize medication in as few doses of medicine as possible, since it's incredibly difficult to get him to take medicine reliably.
So it's still a work in progress. But at least now we have further confirmation that we're on the right track. No magic answers, but just knowing that we're not doing *everything* wrong is comforting.
on March 13, 2010 at 5:58 am | Reply Beth
Thanks for the update. I was wondering how J-Man was doing. How are Ellie, Abby and Sam?
I think of you every day. I'm so sorry that this pregnancy has been so incredibly difficult.
I'm looking forward to seeing you again — soon, I hope. Are you up for company one Sunday?
on March 16, 2010 at 5:59 am | Reply Rachel E.
Just wondering if you meant to put J's real name in this post. (I had noticed you like to keep things more anonymous than not.) It's in the 4th paragraph that starts with, "We had a parent intake…" in case you want to take it out.