School Number One & Hospitalization Number One

By the time my son entered kindergarten his teacher complained that he had boundary issues. She told me she didn’t think he had “a firm grasp on reality.” When I asked her why, she said she asked the boys what they liked to do with their fathers. My son told the class that he and my husband enjoyed snowboarding in Alaska. Of course, they have never been snowboarding, let alone snowboarding in Alaska.

I balked at the teacher’s suggestion of dementia, and chalked up his answer to a child’s vivid imagination, which my son has in spades. But I also thought it was probably time to consider new avenues of medical diagnosis and treatment.

Since attention-deficit/hyperactivity disorder (ADHD) runs in my family, I thought it prudent to have my son tested. The tests showed that he did have ADHD and our pediatrician put him on medication to treat it.

Aside from a few minor incidents, we thought our problems were solved. He calmed down. His erratic and destructive behavior seemed to be in check. He had lots of friends and got along well with them. Harmony had been restored to our household.

This peace and prosperity continued into the first grade. He occasionally refused to do some of his class work, but his teacher was very lenient with him. If he didn’t want to work, she wouldn’t force it on him. Homework wasn’t even on the horizon yet. He still had plenty of friends and got along well with everyone.

Second grade came around and the trouble started again, but this time it was worse than anything we’d ever seen. It was as if his personality had changed overnight. One day we had a happy-go-lucky, funny and outgoing seven-year-old. The next day he became sad, withdrawn and self-loathing. This was the same little boy could always turn on a cute-as-a-button look or throw out a sharp-as-a-whip quip to keep himself out of trouble. Now he was gone. Somehow, we’d lost our kid in the blink of an eye and we had no idea how it happened.

He told us no one wanted to play with him and no one liked him when he came home every afternoon. The teacher couldn’t easily get him to do his work. He complained that he was not good at it – he wasn’t good at anything. At home he would have outbursts of anger and crying. If he asked for something – regardless of what it was, and it might be anything – and didn’t get it, he would cry and scream that we didn’t love him. Believe me, that’s an effective negotiating technique for any kids who might be following along, but it’s like a knife in the heart for a parent to hear that their own child thinks they’re not loved.

Sometimes he was just destructive and aggressive. One thing was for sure, regardless of the behavior he was exhibiting, he felt alone, angry and scared. He needed help and we were unsure of what exactly to do.

We were at our wit’s end. We were running out of excuses for his behavior and knew it was time to find some answers. I took him for psychological testing again. This time the tests showed severe depression and possible oppositional defiance.

We found a psychiatrist who diagnosed him as bipolar. Even though this diagnosis somewhat in opposition to the test results we received just days before from one of the most respected psychologists in her field, we went along with it. We were prepared to do anything necessary to heal our son and to take away his pain. There was no reason a child of his age should shoulder his burden. We were devastated for him.

As the year progressed, we saw therapists to manage his frustrations and the psychiatrist gave us prescription after prescription after prescription. In the meantime, the level and frequency of his rage increased exponentially. He raged so badly that he occasionally bit into my car doors on the way home from school and left teeth marks. Oftentimes, upon hearing he couldn’t do something trivial such as stop for a snack at a fast food restaurant after school, he took his shoes off and tried eating his socks.

Things at school worsened as well. He would not do his work. He started spinning in the classroom. He refused to leave the playground when recess was over.

His aggression was escalating. At home, he was regularly attacking my husband and me if we asked him to do something he didn’t want to do. This continued hostility forced us to make the most difficult and heart-rending decision of our lives. We had to admit him to a behavioral health hospital for acute care.

I have no idea how any parent can prepare and steel themselves to do this. Despite the difficulty of the decision, the guilt we felt every time we visited and saw his face covered in tears when we had to turn around and leave and the impossibly long days we waited for him to come home, it turned out to be our saving grace. The doctors saw how much and what kind of medication he took they were flabbergasted and immediately set upon reducing the quantities. They said it was likely that all of the drugs in his system were working to his detriment and causing much of his undesirable behavior. My husband immediately ascribed a change in my son’s behavior to yet another medication – his seventh daily pill at the time – prescribed to our son by our then-psychiatrist, and was adamant about pointing it out to the hospital staff.

In our zeal to make our son better, we were quick to overlook the near quackery of this doctor. It seems that during our visits all she did was dole out pills without the slightest concern for whether these cocktails might have a detrimental effect on the health of a second grader. When his behavior or moods changed for the worse quickly or unexpectedly, she was never available by phone. We were only allowed to speak to her secretary who would relay messages to the doctor. Return calls were a rare and surprising luxury.

It’s a given that doctors have a phenomenal workload, and as patients we must respect that. But doctors also have a responsibility. The first four words of the Hippocratic Oath are “First, do no harm.” In this day and age of “miracle” cures, a public perception has developed surrounding medicine, most people expect that they can go to their doctor’s office and get a prescription for a pill to cure almost anything.

Of course, that’s not true. We walk a slippery slope when our physicians believe the PR about all of the latest and greatest medications on the market. When this happens, our doctors – arguably society’s most respected professionals – are no better than snake oil salesmen pedaling patent medicine with questionable ingredients that might further sicken or even kill their patients.

It’s up to us as patients and even more so as parents to make sure that we are seeing physicians that have our best interests at heart. This is especially true with psychiatrists. It’s far easier to notice if a medication is relieving pain or treating an infection than if it’s managing depression or dealing with bipolar disorder. Be sure to discuss your medications with your doctor and don’t always take a prescription on faith. When it comes down to brass tacks, faith is the only defense of faith and that faith can get you killed.

While my son was in the hospital, I received a call from the father of one of his class mates. By coincidence, this gentleman was a psychologist and was also arranged to do my son’s psychological evaluation. For ethical reasons, he wanted my permission to proceed. I agreed and he promised to speak with us after the evaluation. Following the evaluation, he asked if I noticed or thought about any pervasive developmental disorder not otherwise specified (PDD NOS) symptoms. I had, but our psychiatrist dismissed my suggestions. The psychiatrist asked permission to discuss my son’s case with his wife, who is also a psychologist and works at a children’s developmental studies center. Afterwards, she contacted me and offered to put him on the center’s waiting list for a full evaluation. Because of her association with this world-class center, my son was fast-tracked through the waiting list and offered an evaluation in July. It was March 2009 at the time, so we had only a short wait and I was excited to hopefully get to the root of some of my son’s struggles.

Following his hospitalization, I decided to have the Autistic Diagnostic Observation Schedule (ADOS) test administered. The test showed Pervasive Developmental Disorder - Not Otherwise Specified (PDD NOS). It’s the first tier of the autism spectrum. We changed psychiatrists and reduced medication, although he still suffered from depression. He returned to school, but the faculty and staff were still unable to manage him. They did their best, but told us that he could not return the following year.