Teetering

My 12-year-old son, his pediatric psychiatrist, my husband, and I recently embarked upon a project known in mental health circles as a med change. Every person with mental illness, and every caregiver of same, shudders at that two-word phrase. A med change is always undertaken with hopes of some kind of improvement (in my son Carter’s case, we hoped for decreased side-effects), but med change usually makes things worse before it makes things better.

The psychiatrist, Dr. S., and I decided we would accomplish the med change via a process called cross titration, meaning we would slowly introduce a new antipsychotic medicine as we gradually decreased the old one, in hopes we could avoid a reappearance of the monstrous and terrifying symptoms the old drug has kept (mostly) in abeyance for three years.

Carter was a grudging participant in the whole process. He remains traumatized by the years when his mental illness was acutely symptomatic. Moreover, he tends to impart talismanic power to his medicine, overestimating their role in his stability and underestimating his own hard work in learning and applying skills that help him cope with his challenges. Unfortunately, the particular side effect we were trying to alleviate is a serious one, and just like a parent who must buckle a screaming baby into the car seat he hates, we adults were forced to take the long view and make a change Carter resisted.

Just like the phrase med change sends a shudder up the spine of every person who has, or loves someone who has, mental illness, we also carry the terrible knowledge of the dreadful inadequacy of our mental health care system, of the knife blade we are always teetering upon. My son’s pediatric psychiatrist is brilliant and kind. She strikes exactly the right balance between respecting the gravity of my son’s illness, and also respecting the dangers of the medications she prescribes to control that illness. Together, we seek to give him the minimum effective number and dose of medicines.

With that goal in mind, when Carter and I arrived for an appointment with Dr. S. two weeks ago, we decided to continue reducing the old medicine, and keep the new medicine at the starting dose. He had tolerated the change quite well up to that point, and his dose of the old medicine had dwindled to almost nothing, so we decided to find out if the small dose of the new medicine would be enough. After all, if it didn’t work, we could always call Dr. S. and make a quick adjustment.

Enter a confluence of five potentially disastrous factors, namely Carter’s sudden and rising instability; the holidays and difficulty contacting Dr. S; the practice of medicine by checklist and cover-your-ass reactivity; my pervasive naïveté about the value of sharing all available information; and one stranger.

It went like so: I called Dr. S. She, under the time constraints of her large caseload and the imminent holidays, had one of the physician’s assistants in the university clinic where Carter sees her for appointments, triage her phone calls. When the PA called me, she said, “The notes from the receptionist say you want to increase one of Carter’s medications. Why is that?”

And I, lulled into false confidence in this stranger because she was acting as emissary to our beloved Dr. S., told her everything, including what Carter had told me a few days before about wishing he would die, but being too afraid of pain and blood to do anything to cause his own death.

Does that sound like a crisis that requires immediate action on the part of a team of highly skilled medical professionals? Does it seem reckless and appalling that, instead of rushing my child into the arms of doctors and nurses, I sat with Carter for an hour, listening to him yell and cry, then helped him into the shower for a hot soak before I gave him his medicine and sat with him until he fell asleep? Probably. Except that a visit to the ER for a psychiatric emergency is not like going to the ER for other medical problems.

I have seen things in psychiatric ERs that should curl anyone’s toes, both when I took my own child for evaluation and when I have accompanied friends whose children were in crisis. I went with my friend, whose child was diagnosed with schizoaffective disorder by leading pediatric psychiatrists and psychologists at a prestigious medical center after extensive evaluation and who was at the time acutely psychotic, to the ER, only to hear the nurse (who had spent ten minutes with her child) tell her that all her daughter’s problems were due to lack of discipline. I saw another friend walk out of the ER, defeated, after the staff told her to give her son a double dose of Benadryl to make him sleep. He had, that afternoon, tried to choke his baby brother in his crib while my friend brushed her teeth. My husband and I took Carter to the ER after he spent 9 hours helplessly cycling between paranoid rage and suicidal depression from which we could not calm him. When we finally saw a doctor, he scolded us for waiting as long as we had to see the outpatient psychiatrist, when in fact we were in month 3 of the 4 month wait that every new patient endured from the moment of first contact with the outpatient clinic until the time of the first appointment. We were sent home with instructions to give Benadryl for sleep and to keep our appointment at the outpatient clinic 4 weeks hence.

Don’t misunderstand. There are times when the ER is the only appropriate place to go, and there are times when the ER is helpful and even life saving, but based on our experiences, it is a solution of last resort.

So it was that when I spoke to the PA and informed her of the things my son had said about wishing to be dead, and she told me that I must take him to the ER immediately, I balked. I was horrified at the idea of subjecting my scared and fragile son to the staff of the ER, who are sometimes very kind but often brusque and even cruel. I am also cognizant of the criteria for psychiatric admission. Here in New Mexico, where psychiatric beds are extremely scarce, no one gets a bed who is not obviously and gravely ill, and sometimes even then people are sent home.

When I resisted the idea of taking my son to the ER, the PA informed me that she was a mandated reporter, meaning that a report to the child protection division of the Department of Health and Human Services would be in order if I did not “take my son’s health seriously” (her words) and act immediately.

I hung up the phone and tried to decide which would be more traumatic for my son: a visit to the ER, or a visit from CPS, which could result in a forced visit to the ER? Either way, we would be wasting resources, taking time away from some other child whose parents could not keep him or her safe at home. Either way, my son would not be hospitalized. Either way, my son would have to hear me lay out a list of symptoms, behaviors, and plans for protection that he is loathe to explore with strangers. Either way, we would lose.

My husband and I decided to stay loose and wait for a call from Dr. S. I paced the house, phone in hand, and silently raged at a system of care that is so callous. I am my son’s mother, except not quite. When I decide that my son is safe at home, any medical professional with whom I speak may decide that I am wrong and invite an official investigation of my capacity as a parent. When I decide that my son is not safe at home, the system of psychiatric care in my community may decide that whether he’s safe or not, I must keep him home and hope for the best.

Dr. S. called me back, and she, the doctor who knows my son, who knows my family, who knows how many locks we have in our house and how willing I am to stay up all night and supervise Carter if that is what’s necessary to keep him safe, called in the needed medicines to our pharmacy. She made clear that the decision to go to the ER or not lay with me and my husband, and that there would be a doctor on call at the clinic while she was on vacation. She could have called me back much sooner if there was not a dangerous shortage of psychiatric care providers and her caseload was more reasonable. We could avoid so much heartache if we took mental health care as seriously as we do cardiac and orthopedic and almost every other kind of care.

And imagine, if you will, the families out there, thousands of them, who have no Dr. S. Imagine standing on the knife edge with no one to catch you on either side. Imagine.

Photo by Scott Boruchov

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