psycho killer, qu’est-ce que c’est (on the joys of a medication cocktail)

I’ve got to tell you about this journey so you understand how a family that’s generally opposed to a bunch of prescription meds ends up at a place where our 12-year-old is taking a cocktail of four prescriptions every day.

1.  SSRI

A couple years ago, we finally gave in and got Jesse onto an anti-anxiety med, an SSRI. That was a hard decision, because she’s still very young. But she was so strung out, so lost and sad and angry, for so long. Therapy wasn’t cutting it, despite years of effort. We knew we needed to try, and indeed the citalopram (Celexa) helped.

And then it didn’t.

2.  Clonidine (blood pressure med)

So two springs ago we ended up at Rogers hospital, a mental health institution, at which they increased the citalopram to a maximum adult dose (for a 60-pound kid). They also added clonidine, which is used to treat high blood pressure in adults. In very small doses, it’s supposed to help with tics, according to the Rogers people, but everyone else seems to use it as a sedative and sleep aid. We were pretty fried by the time we were at Rogers though, and we went along with it despite many misgiving. It kinda-sorta helped.

Except it didn’t really. Jesse still had all the tics and obsessions going, and the clonidine made her really tired.

So we threw up all over the Rogers experience last fall. We abandoned intensive therapy and moved on to a psychiatrist simply for meds, with the goal of freeing Jesse from the shackles of seeing shrinks every day who suggest that she sucks the way she is. (Of course that’s not what they say; but she’s a smart kid, and she sees through the euphemisms.) (Do you like all the hissing?)

Our new psychiatrist, Dr. Hale-Richlen, is really interested in PANDAS and PANS, two syndromes that involve inflammation in the brain and yadda yadda. She’s really into inflammation, and she wanted to do a mountain of bloodwork to explore the possibilities.  We went along with it, because Jesse was so wretched and more information is better than less. Usually. There was little evidence of any inflammatory process in Jesse that would justify PANDAS-style treatments, but we did discover Lyme disease, which we were therefore able to treat. Sigh. Also we learned that Jesse hadn’t mounted an immune response to the pneumonia vaccine, so that could explain why she had had a couple tough cases of pneumonia recently. Another sigh.

In other words, despite my skepticism and misgivings about Dr. H-R’s explorations, we had learned some really important facts. I was grateful, and Jesse’s physical health improved. But things still sucked badly for her behaviorally. We discovered that Jesse couldn’t miss even a single dose of her citalopram, which she took twice a day, without falling off the rails. So Dr. H-R suggested a different anti-depressant, an extended release version called fluvoxamine. We went through the painful process of introducing  it and then taking out the citalopram, which took a couple months and was pretty hard on Jesse’s body.

It kinda-sorta helped. Jesse was able to go to school full-time again, and she was trying to get back into extracurriculars, but it was all still a struggle. She was overwhelmed and exhausted every day by her tics and obsessions. Plus the mid-day dose of clonidine sometimes left her in a kind of stupor, which made her fall asleep randomly during school. She was rude and obnoxious and oppositional and lots of other words that aren’t very nice ways to describe people.

Last spring, when I finally started taking my own anti-depressant, I experienced what the right med can do for a person. I am now transformed. These days I emanate a soft and peaceful shining light, one that illuminates clouds from beneath and renders night lights superfluous.

Yeah, that’s right, you heard me right. Why are you looking at me like that?

Well. At least I’m not so depressed anymore. I’m coping well these days, and I feel really good about myself most of the time. I’m still weirdly productive. So I have a new concept of what the proper med maybe-probably-ideally should be doing for Jesse. The fluvoxamine wasn’t cutting it. Jesse was still coming to me almost every day to tell me, “Mommy, I feel sad for no reason.” And she was still more blank than made sense, lost between her ears somewhere.

3.  Piaglitazone (diabetes med)

In late spring I asked Dr. H-R if we could try a switch to a third med. After all, it can take some time to find the right anti-depressant, everyone says. In keeping with her eternal focus on inflammation, however, the doctor talked me up a storm about how, in some people, an inflammatory process can limit the efficacy of SSRIs. There were many big words and ideas that I could follow in the moment, but not retain. She suggested that, before we begin the painful process of switching to a new anti-depressant, we try something else. Tempting.

Piaglitazone is an insulin-sensitizer used to treat diabetes in kids. (I think I have that right.) It’s also occasionally prescribed in very small doses as a supplement to an SSRI.  I don’t know how common this is, but Dr. H-R had obviously given it a lot of thought. (I try not to google psychiatry-related things too much these days. It can be scary, and it’s always way too unfiltered.) According to Dr. H-R, piaglitazone interacts with some chemicals and thises and thats in the brain and body, in a way that can have an anti-inflammatory effect and improve the performance of SSRIs.

I took the script and my skepticism home with us. Eventually I dragged myself to the pharmacy. Eventually I gave Jesse her first dose.

Within a few days we saw a difference. Her mood was remarkably improved. She was  happier, and she stopped telling me she was sad all the time. She was doing more, getting out of the house more, wanting to see friends more. We took her off the day-time clonidine and relegated it to evenings to help her sleep.

So there we were at three meds: the SSRI, the piaglitazone to improve the SSRI’s performance, the clonidine to help Jesse sleep.

4.  Risperidone (atypical antipsychotic)

Last month we saw Dr. H-R for Jesse’s regular visit. I’m trying to roll with what comes these days, and I think our re-embrace of a Ross-Greene-ish approach through the summer has helped Jesse a lot. Things were going so much better, but Jesse was still emotionally jagged and continuing to struggle every single day with tics and obsessions and all that shit. And her anxiety is what it is. But (thanks in no small part to my own medication) I’ve been in a good zone, trying to work with who she is and helping her build some new strategies.

Still, it’s a struggle.

As we were wrapping up, Dr. H-R ruminated intensely. I could practically see the racing thoughts in her head as she stared at her computer screen and her notes. “I’m just wondering if we’re doing everything we can for Jesse. Is there anything else we can do to help her?”

Dr. H-R is a pretty quirky person. Super bright, obviously, and questioning and passionate about the science. Some might say she overshares, but I appreciate her being really transparent about her thinking and the research she’s investigating, as she figures out what options are available for Jesse. Also she’s passionate about the kids. She has her own little ones, and I’ve noticed that she cares deeply about her patients.  So when she asked that question, it occurred to me that I’ve gotten entrenched recently in going with the flow, as I’ve worked to abandon a pathology-based view of who Jesse is. But there’s got to be some balance. Jesse does need more help.

I listened, and Dr. H-R suggested risperidone.

Antipsychotic.

Sorry.

We’ve known for a long time now that one possible step in the medication journey, for someone with bad tics, is an antipsychotic. We worked really hard to avoid it.

It’s such a scary word. We associate it with words like schizophrenia and psychosis; it’s as frightening to me as words like “cancer” and “Donald Trump.” I associate it with drooling and zoning out and terrible weight gain and many negatives.

Unfortunately, I don’t associate it with lots of good things, like not being completely debilitated by obsessive thoughts.

I took the script and my skepticism home. Anthony and I compared notes and feelings. We agreed that we had done everything we humanly could in terms of therapies and accommodations. I hit the pharmacy and brought the risperidone home.

Dr. H-R had suggested we give it a try and see if it helps, see if the side effects were bad. She suggested Jesse might be able to use it on an as-needed basis — not unlike ADHD meds — given the waxing-and-waning nature of tic disorders.

Jesse started taking one tiny dose every morning, half a milligram. I noticed the difference on day one and chalked it up to coincidence or placebo effects. By day three or four, I realized there was a true difference. Jesse wasn’t filled to the brim with obsessive thoughts. Her tics were almost absent — not completely gone, but not a constant presence either. She didn’t complain of any side effects, which I had explained to her so she could be aware of them. When I asked her how she felt about the new med, she answered in her plain and wise way, with a single firm nod. “I like it.”

* * * * *

It’s been almost two weeks now since we added the risperidone into Jesse’s cocktail. She is the same person, but she is also transformed. She’s less tired. She’s more alert. She wants to exercise. She wants to do things. She’s begun to wonder why she stopped writing a couple years ago. She gets along with people better.  She isn’t screaming at me all the time. It’s the kind of change that makes people say things like, “it’s a miracle!”

It makes me say, a little sadly, what took us so long?

Jesse went to a full week of all-day taekwondo camp last week. All the teachers and counselors there know her well; they’re familiar with her tics and emotional jags, with her profound negativity about herself. There was a lot of good cheer as they praised her and high-fived her out the door. They were so proud of her. I felt helpless relief. Not once in the past three years has Jesse been able to finish out a summer camp.

The last day of camp ended at a park on a bluff overlooking Lake Michigan. It was a stunning afternoon, sunny and warm. We picked up the kids with swimsuits in hand. Jesse was excited and happy. She traipsed over to the car and changed quickly; there was no whining. She raced down to the lake joyfully without waiting for Nick or me or Anthony. I can’t remember the last time I saw her with that much energy at the end of a day, at the end of a long week. I heard an unfamiliar laughter coming from the roots of her as I chased her down to the lake. I was still a hundred yards away when she threw herself happily into the water and dunked her head.

I know this sounds like one of the fake happy tales I sometimes make up: but it was real this time. I tucked my tears away and raced into the water after her, pondering the miracle of modern chemistry.

* * * * *

Ever since I gave Jesse that first tiny pill of risperidone, I’ve been suffering from an earworm. I offer my condolences if you catch it:

Psycho killer
Qu’est-ce que c’est
fu-fu-faaa fu-fu-fu-fu-faaa far better
Run run run run run run run away…

I love the French phrase in this, because it means something like “what is it that it is?” Which is kind of weird, but I think of it (rightly or wrongly) as meaning basically, “Whassup with that?” It sounds like “kess-kuh-say,” so reading it in print is like seeing a pen-stutter, or the extremely long name of a chemical compound.

Anyway, I’ve been humming the refrain a lot. It’s getting to me, but it’s still better than Disney tunes.

I realize, though I don’t like thinking of it this way, that the intrusive obsessive thoughts that have filled Jesse’s brain aren’t that far a distance from the voices that might accompany schizophrenia. And sometimes Jesse’s anxieties are so severe, and her tics are so overwhelming, that she isn’t really all that aware of what’s happening in reality around her, which isn’t that far a distance from dissociative episodes. And still, she’s a pretty awesome kid, not so frightening after all, not so lost in the jungle. She just has her own challenges to face, like the rest of us.

So I offer a drug cocktail to Jesse every day, her own personal psycho killer. I frequently remind her that she has the power and autonomy to choose not to take any or all of the pills, and we may encourage her to give up the clonidine as a sleep aid. She ultimately has to choose what feels right for her; because the correct answer to the question David Byrne posed, I think, is simple. What is it that it is? It is what it is.

I know there are people out there who will judge Anthony and me for these medication decisions, but we’re doing the best we can. Parents like us, struggling to help our kids stay healthy with their invisible disabilities, don’t deserve to be judged, by others or even by ourselves.

I don’t know if the meds will transform Jesse’s experience forever, or even for more than a few months. She’s in puberty and changing every day. I do know that, here and now, chemical intervention is a salvation, because without it Jesse would live in a personal hell. Medication adds a measure of hope that whatever is left of her childhood will be filled with more laughter than misery, more connection that alienation, more pith than emptiness.

I will accept whatever judgments are thrown at me, with pleasure, for that. And I know I’m doing okay because, just today, a little girl told her mom she wants to come here to my house for a playdate with Jesse and Nick. She said I’m the third best mom she knows, after her own mom and aunt.

If I can be the third best mom in the world, I’m doing okay.

Advertisements

where to find all the empathy

Let me tell you two stories.

* * * * *

Jesse has a friend named Ben. They don’t really have a whole lot in common, except for both being charming, quirky, and likeable. They like different books and games; they do different after-school activities. But they seem to be genuinely fond of each other.

Ben happens to be on the autism spectrum with some anxiety and maybe ADHD thrown in for good measure. Jesse happens to be on the anxiety spectrum, with OCD and Tourettes thrown in for good measure. Both of these kids have labels, and also some social cuing problems, emotional unevenness, issues with perseverating, and internal dialogues that can be hard for others to follow. Both can have trouble connecting socially at times. None of these challenges and labels are a barrier to their friendship.

We happened to be at a local pool one day with a handful of friends, including Ben’s family.  Jesse and Ben wandered off to the water slides together. At some point we observed them at the top of the stairs to the slides, having a conversation we couldn’t hear. Jesse was gesticulating with her hands, leaning in to Ben and speaking intensely. He looked at her seriously. A moment later, they disappeared from view — which means down the slide they went.

That evening, I asked Jesse about what I had observed. This is what she told me, in a nutshell:

A potential crisis developed as the two stood at the bottom of the stairs to the slides, waiting for the possibility of a two-person inner tube. These are in extremely short supply at our watering hole. Two kids came off a slide in a rare two-seater. Jesse and Ben asked if they could have it now. The kids said no. Ben told them in no uncertain terms that it wasn’t fair, and he went on about it. Ben gets stuck sometimes on fairness issues. He knows what the rules are and he thinks everyone should follow them, just like he tries to do.

Oh boy, has Jesse been there. She watched Ben arguing at the kids, and in her heart she agreed with him. She also observed the other kids staring at Ben without speaking, in a way that was unkind. But she didn’t join in the argument. Instead, she got close to Ben and spoke quietly to him. We can go up with just one-person tubes, and then you and I can race down both slides together at the same time. It’ll still be fun.

Ben decided this was a good idea, and they headed up the stairs together. But they were in different spots in the lines as they waited their turns. Ben became very concerned about it, and was headed down the road to being upset. Another glitch in the plan. How would they race if they had to go down the slides at different times?? Oh boy, has Jesse been in that emotional spot herself. She offered Ben a solution: if Jesse got to her turn in line first, she would just let kids pass her until Ben caught up. And he could do the same thing if he got there first. She explained it a couple times until he got it. Problem solved. Fun racing ensued.

As Jesse shared this story with me, I marveled with pride. Jesse had just given me a textbook lesson in empathy. She accepted Ben as he is. She saw his side of things and responded to him from a place of respect. She tried to help him solve the problems that were eating at him, without a single didactic interlude. She didn’t even waste her energy on the kids who were hogging the double tube. She knew instinctively there was nothing to be done there. She paid attention to her friend instead. There were no labels between them – just friendship and open hearts.

* * * * *

Our local state university outlet – University of Wisconsin Milwaukee or UWM – runs a summer program for kids and teens. One of their offerings this year was a course on painting with acrylics, two hours a day for two weeks. Jesse has been busy exploring painting this past year, so she was enthusiastic about the class. On the other hand, we’ve never done any UWM summer classes before, so she was really stressed out about it… which means her obsessions and tics would flare… which created even more stress in her mind as she anticipated the flare… and so on in a vicious cycle. She was pretty much a train wreck on the first day of class, but she hung in there and kept going back.

By the second week of the class, Jesse was clearly getting even more unhinged than usual. She eventually shared with me a bit about her experience, and a sadness creeped over her.

She had made so many screeching sounds on the first day, she told me, that people didn’t want to be near her. Everyone else seemed to know each other, but Jesse had trouble connecting with anyone because of her tics.

I asked if Jesse had tried to explain her behaviors.  “Did you tell them about any of your mental health disabilities?”

“No,” Jesse answered firmly. “I didn’t want to.”

One girl in particular really struggled with Jesse. One day this girl was getting upset about her painting — a feeling Jesse is familiar with — so Jesse tried to offer her praise and encouragement. The girl responded sharply, “Stay away from me.”

Jesse snuck a starburst onto her chair one day, as a way to sort of say sorry. The girl snapped when she saw it. “Who put this here??”

Jesse said she did, to which the girl replied gruffly, “I don’t want it!”

Jesse was sitting in my lap as she shared these anecdotes in a dry, sad voice. I buried my face in her neck and staunched my tears. I didn’t know what to say.

“I’m sorry.” It was all I could muster.

“It’s okay,” answered Jesse. “I deserved it.”

There was one girl who actually was a little nice to Jesse. One day Jesse asked her how old she is.

“I’m thirteen,” the young lady responded. “How old are you?”

“I’m twelve,” Jesse replied. She noticed two girls standing nearby listening in. The girls stared at Jesse; they looked meaningfully at each other; they looked meaningfully back at Jesse.

Jesse – being the child of my heart – took that nasty shit on. “Why did you stare at each other like that and then at me? You don’t believe I’m twelve? I am twelve, I’m just really small.”

“No, it’s not that,” one of them answered with a bit of a sneer. “It’s just, if you’re twelve, why do you make noise like that?”

My heart squeezed in pain as Jesse shared this little bit of weird nastiness with me. I hugged her tight and mumbled into her hair. “What did you say?”

Jesse pulled back and looked at me. She shrugged. “I thought yeah, they’re right.”

Later in the evening, after my hurting for my baby girl had subsided, I marveled with sadness. Jesse had given me another textbook lesson in empathy, only it was from the other side. She accepted these mean girls’ reactions to her, even as they refused to accept her in return, refused to make any real effort to comprehend her. She understood their point of view, even though she’s never shared it. She didn’t judge them. She didn’t try to make them see her side. She knew instinctively there was nothing to be done there.

* * * * *

 

 

Most kids with behavioral and emotional challenges learn early on that they need to do a better job of understanding how their behaviors impact others. It’s pounded into their heads with emotional jackhammers, by parents, therapists, doctors, counselors, teachers, school administrators, all the adults all the time.

So who’s teaching those lessons to the neurotypical kids? Who says they’re not the broken ones? Where is the mutual empathy and acceptance that kids like Jesse and Ben deserve?