As parents, we have to make big decisions on our children’s behalf and sometimes we have to make those decisions in moments of crisis, with incomplete information, and contradictory or ambiguous advice from experienced professionals. This post is about making the decision to give a troubled child powerful drugs when no one can assure you that they will work or that they will do the child no harm. My experience has not given me an overwhelming faith in the medical community when it comes to child psychiatry (though I do have faith in the good intentions of some practitioners), nor reduced my wariness towards the pharma-industrial-health-insurance complex, which sanctions payment for potentially life-threatening therapies while refusing payment for more benign, nutrition-oriented options.

If you don’t have time to read this post in its entirety but are wrestling with these decisions yourself, I invite you to jump straight to the comments section. I would love to be part of an ongoing discussion here regarding the alternatives we face and the consequences we must weigh when making decisions of this magnitude. – Matt

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My oldest son was always a handful. Often difficult to calm as an infant (“colicky,” they called it), he was the toddler who was always into everything. As he got older he was the kid who would hit other kids randomly at the playground or at daycare. When we had our second child, we had to be extra careful because you never knew when he was going to hit or throw something at his little brother. Play dates had to be closely managed and sometimes invitations were declined because the other child was afraid of my son.

Things escalated to an official level when he was in first grade and his teacher began have difficulty controlling him. We asked that he be evaluated by the school system and it was uncovered that, in addition to some learning disabilities, he also suffered from some cognitive deficits related to “executive function,” that part of our brain, as I understand it, that helps us control our impulses as well as generalize and internalize rules drawn from personal experience.

It took a long time to find an effective child psychiatrist. Eventually we met someone whom we trusted and who was able to establish a rapport with my son. After a few meetings this doctor diagnosed him with a “Mood Disorder (NOS)” – “NOS” means “Not Otherwise Specified” – and recommended that we begin administering our son risperidone.

Deciding to give your child an “atypical anti-psychotic” which can cause “extrapyramidal effects (sudden, often jerky, involuntary motions of the head, neck, arms, body, or eyes), dizziness, hyperactivity, tiredness, abdominal pain, fatigue, fever and nausea” is not easy. Nor is it easy worrying when he might seriously injure his younger sibling or another child, or, frankly, when you might hurt him in an effort to restrain him. We started giving him drugs.

Thanks to the “fatigue/tiredness” side-effect, my son started going to sleep a lot earlier and was more generally sedate so my wife, my younger son, and I got a kind of break. However, since the drug simultaneously increased his appetite while decreasing his energy levels, he began gaining weight. This concerned us, so we switched him to another drug, lamictal.

Now, in rare cases, lamictal can cause a life-threatening rash, either in the form of the quaintly named “Stevens-Johnson Syndrome” or the more terrifyingly named, “Toxic Epidermal Necrolysis.” To ensure that these side-effects will not occur, you have to introduce lamictal fairly slowly which meant that he continued to take risperidone for several months even after we decided to make the switch.

After about a year and a half, the lamictal (which I believe is an anti-epilepsy drug) seemed to be less and less effective at stabilizing my son’s mood and things got so bad that he had to be hospitalized. We then ran through a series of other drugs – geodon, topamax, zyprexa – finally landing on seroquel. Like risperidone, seroquel can also cause weight gain, and that’s just what it did. After several months of this, and not really seeing a marked decline in “mood lability,” we consulted our physician and decided to take the kid off drugs altogether.

Now, I’d like to say that, miracle of miracles, my son got better. He didn’t. Still, he didn’t get much worse off the drugs – that is, until his school refusal and mega-meltdowns got so bad that he had to be admitted to the hospital again. The doctor there explained to us that the drugs our son was on take about two months to completely leave his system so it made sense, clinically speaking, that two months after we’d stop administering them we’d see a major regression, as we indeed had.

Of course, the question then became: What do we do now? We’d pretty much exhausted the standard drugs prescribed for these cases and the primary remaining option, lithium, not only had side-effect issues of its own (requiring weekly blood draws to monitor), but would have to be taken for six weeks before we could tell if it was effective or not.

Around this time, my wife  heard about an alternative therapy involving mega-doses of vitamins and minerals that was getting a lot of attention both in the mood disorder community and the medical establishment. So that’s the path we’ve been going down since February. I can’t say definitively that the therapy is more effective than the others we’ve tried, but it is not noticeably less effective and, as one doctor after another told us while we were considering it, “At least it can’t hurt.”

Dealing with psychiatric problems in your child has a lot of complex and troubling layers; deciding the most appropriate medical treatment is just one of them. If there is any lesson to be drawn from the story I’ve told, it is this: Never stop questioning the recommendations you are receiving from doctors, especially if they don’t seem to be working (since you will, inevitably, be spending more time with your child than any doctor). Also, remember that there are a lot of people out there with the same challenges, questions, and problems. These people represent a community of experience and collective insight that it always behooves you to consult and contribute to.

Image Courtesy of ark.