crossroads

*

Brooke’s developmental pediatrician is looking at me earnestly, waiting.

I appreciate the fact that she has just acknowledged that the decision ultimately belongs to me and Luau, but on some level I really wish she’d just look at me and say, “Ok, here’s how we’re going to proceed.”

But this doesn’t work that way. It can’t. This a collaboration. Or more accurately, an advisory panel. The experts come together, compare and contrast perspectives and offer up their individual expertise. And then they leave. And we are left to make the decision. Alone.

The doctor and I seem to agree that keeping Brooke’s dosage of her SSRI* where it is now is not the best path. After talking and listening and listening some more, I sum it up aloud. I need to hear my thoughts.

“So really, at this point we are no longer sure that she’s really receiving any benefit from the medication that she’s on. It’s been two years since we began this journey and in those two years, despite a dramatic change in her size, we’ve barely increased the dosage, so there’s a good likelihood that the drug levels simply aren’t sufficient to really provide the efficacy they should. It’s also impossible to gauge whether or not her anxiety level is being mitigated by the drug or by her burgeoning abilities to self-monitor, self-regulate, and self-advocate.”

The doctor nods.

“OK, so basically we have two options as I see it. Either we talk about increasing her dosage OR we take the counterintuitive approach and begin the process of weaning her off the meds completely because that appears to be the only way to determine whether or not they are providing any actual benefit.”

The doctor nods again. “I agree completely. What you are saying makes perfect sense. I do not recommend staying where we are now.”

I look at my girl, playing on the floor. She has not left a single toy in the office untouched. She has stripped off her rain boots and her socks and has thrown her sweater on the floor, declaring it ‘dead’ after it got sprinkled with water. She is wearing nothing but her leggings and undershirt. I’ve made it clear that nothing else can come off.

We talk for a while about the risks of change. I ask the doctor about her experience with weaning her young patients off of this family of SSRIs and then meds in general. She reiterates, as she always does, her strong belief in a long, slow weaning process. I am sufficiently convinced that the risks of taking her off the drug are minimal. Except of course, if it’s actually working.

But then I say it. The heart of the matter hangs out there between us.

“The truth is, I’m torn. I remain extremely concerned about the risks, both known and unknown, of long-term use of these – or any drugs. I am as profoundly uncomfortable using them now as I was when we started two years ago. This can’t be a long-term solution. But, if we’re being honest, while her anxiety level plummeted initially, there is no question that it has been slowly creeping back up for a long time. We can no longer avoid the dark, brooding elephant in the room. I mean, hell, Katie coughed at home the other night and we were right back to where we were two years ago. It was awful.”

The doctor types notes into her laptop as I speak.

“So I guess the bottom line is that with everything going on at school – the increased demands of second grade both academically and socially, the constant shuffle of support staff coupled with the seasonal change AND the fact that her anxiety was already ramping up throughout the summer, I just can’t fathom yanking the safety net out from under her right now. I truly can’t think of a worse time.”

The doctor looks at me over her laptop.

“I agree. But, I will caution you. There is no good time.”

Her words hang in the air. They are broadly applicable in my life right now.

She continues. “Once you get past September, you start heading right into the holidays. First there’s the chaos surrounding Halloween, then Thanksgiving, then December is basically a mess for everyone. January looks relatively attractive  but then you head into February break, then another in April, and well, forget Spring.”

I take a deep breath.

“I like January,” I say. “I think January makes the most sense. A six-week process would take us into February. Of all the not good times, I deem it the least not good.”

She smiles.

Brooke has donned the blood pressure cuff and is asking the doctor to make it hug her arm.

I know what my gut is telling me. I will go over it all with Luau a thousand ways til Sunday, but I know that ultimately I will tell him that I think we should increase her dosage now and then talk about the possibility of weaning her in January. But my brain won’t defer to my gut that easily. It’s never that easy.

I ask her, “What are the risks we haven’t talked about?”

She looks confused.

“You’ve said that Depakote patients monitor liver function. Abilify has metabolic concerns. What are WE looking out for? Are there new studies I haven’t seen? WHAT DON’T I KNOW?”

She tells me that the SSRIs do not come with similar warnings to the two drugs I’ve just mentioned. There’s nothing physical to look out for. I think back to the first time I looked into them. The phrase Suicidal Ideation haunted my dreams for weeks.

I finally say it.

“My cousin lives with bipolar disorder. As I understand it, she’s been on lithium for many years. She is now battling kidney disease. My question is, did her mother have this same conversation twenty-five years ago? Did she sit here wondering what future currency she might be using to buy her daughter’s current well-being? WHAT QUESTION AM I SUPPOSED TO BE ASKING?”

She gives me a long, professional, articulate answer that essentially tells me nothing. Lithium is very different. Rarely used now. Kidney function is closely monitored. I assure her that I was not implying an apples to apples comparison, but she already knew that. She finally acknowledges my real question by saying, “But I’m not sure that renal damage was a known risk twenty-five years ago.”

BINGO.

We talk for a while longer, toss around hypotheticals and what-ifs. We arrange for her to sit in with the team at Brooke’s upcoming neuro-psych evaluation to hear their assessment of her anxiety year over year. She examines Brooke while Brooke examines a stuffed muppet. They compare notes.

The doctor looks at me.

“She’s come so far,” she says.

We remember aloud when Brooke was morbidly afraid of doctors. The first time we saw Dr S, despite the fact that her office looks NOTHING like a typical doctor’s office and SHE looks nothing like a typical doctor, Brooke was still terrified. She was most afraid that she’d look in her ears. Nothing was worse than the ears.

Now, they have a routine. Brooke makes sure that she uses each and every piece of equipment she has. No stone is unturned.

The doctor says, “When I first saw her, she was no more than a fragile shell of a little girl. She didn’t move around her world at all. But look at her now.”

I pull my girl in toward me for as much of a hug as she’ll allow. The air’s suddenly been sucked out of the room.

It hurts like hell to remember where we were.

But as she said, she has come so far. We all have in fact. And while we’ve tried so hard to make sure that we are helping Brooke build a solid foundation out of bricks and mortar, it so often feels more like a house of cards. It’s so hard to know which ones we can pull as we move forward – which pieces we can slowly, gently, gingerly remove – without bringing the whole thing crashing down.

**

* SSRI stands for Selective Serotonin Reuptake Inhibitor. SSRIs are typically prescribed to treat depression, but are also often used to treat panic disorders and to help control pervasive anxiety.

** Please note: Pharmaceutical intervention is absolutely, positively not the right choice for everyone and should only be carefully considered in context. Medication should be administered and closely monitored by an appropriately licensed physician who is familiar with your child. Meds are by no means a substitute for emotional / behavioral support.