It's Nobody's Fault (36 page)

Treatment for schizophrenia should ideally include family support and education, social skills training and other behavioral therapy, vocational rehabilitation, and, eventually, supervised housing, all of which will make the adolescent with schizophrenia and his family more comfortable and better able to cope with this serious illness. But before any of these efforts can be put into motion, the first and most effective line of treatment is
medication.
The only treatment that has any marked effect on the symptoms associated with this disorder is medicine.

The drugs traditionally prescribed for the treatment of schizophrenia are the
neuroleptics
, which are divided into two categories: high-potency neuroleptics, such as Haldol and Prolixin; and low-potency neuroleptics, of which the most commonly prescribed are Thorazine and Mellaril. The medicines are equally effective in the treatment of the symptoms of schizophrenia, but they have different side effects. The low-potency neuroleptics
may cause low blood pressure, dry mouth, blurred vision, lethargy, constipation, and weight gain. The side effects of the high-potency neuroleptics sometimes cause “pseudo-Parkinsonism,” restlessness, weight gain, and acute dystonic reactions (muscle spasms). Dystonic reactions may be frightening to patients and family members, but they are easily reversed with an injection of the antihistamine Benadryl.

The most disturbing side effect associated with long-term use of neuroleptics is tardive dyskinesia, in which various parts of the body—especially the tongue, the facial muscles, and the arms and legs—wriggle and writhe involuntarily. Tardive dyskinesia ranges from very mild to quite severe. The most serious concern about tardive dyskinesia is that it can be permanent. The other side effects associated with the neuroleptics will disappear quite quickly if the medication is stopped. Tardive dyskinesia doesn’t always go away even if the drug is discontinued. The more neuroleptic medication the adolescent takes over time, the greater is his risk of developing tardive dyskinesia. However, if the medication is stopped too soon—because of the patient’s noncompliance, for example—the likelihood of a return of the psychotic symptoms increases. This often means that the adolescent will need larger doses for each new episode, which in turn increases his chances of developing tardive dyskinesia.

In the late 1980s a new antipsychotic medicine, clozapine (brand name Clozaril), was introduced for the treatment of schizophrenia. The good news: Clozaril has proven to be very effective, even on particularly resistant, hard-to-treat cases of schizophrenia. There are fewer side effects with Clozaril than with Haldol; and Clozaril is less likely than Haldol to bring on tardive dyskinesia. The bad news is that Clozaril may cause the white blood cell count to drop, sometimes dangerously. Anyone who is taking Clozaril must have his blood monitored closely.

Another promising newcomer in the treatment of schizophrenia is the antipsychotic risperidone (brand name Risperdal). Like Clozaril, Risperdal has fewer side effects than the neuroleptics and seems less likely to cause tardive dyskinesia. Over the next few years there will undoubtedly be many other new entrants in this area of pharmacology.

Children and adolescents diagnosed with schizophrenia respond quite well to low doses of antipsychotic medication, especially if they’re treated promptly. One study showed an 80 percent response rate in children between the ages of five and 12. The longer someone diagnosed with schizophrenia goes without treatment, the less likely he is to get rid of all
his symptoms when help does finally come. A child who has been sick for six months is probably less likely to respond to treatment than one who has been sick for a month.

One of the most serious problems associated with schizophrenia has to do with the fact that people being treated for the disorder have a tendency to discontinue their medication. For example, a patient who hears voices will take his medicine, the voices will go away, and he’ll decide that he feels fine. If he feels fine, then why, he wonders, should he bother to take his medicine anymore? So he goes off the medicine, and the voices come back.

Going on and off the medication makes the problem even worse than it already is. Studies show that this disease progresses with each psychotic episode. The more often the medication is discontinued, the less effective it is the next time it’s taken. There’s an 80 percent response rate in people with schizophrenia who are given medication after their first break. By the time patients have reached the fourth or fifth episode, the response rate drops to about 70 percent. With ensuing episodes, the response continues to drop. The higher the number of episodes, the worse a patient feels and the less effective the treatment becomes.

For best results someone diagnosed with schizophrenia should take his medicine without interruption. (The best way for parents to encourage their youngsters to keep taking their medication is to believe wholeheartedly, and without ambivalence, that it is the right thing to do.) Sticking with medication has become a lot easier recently, since some neuroleptics, including Haldol, now come in injectable form. One injection is good for 30 days. Unfortunately, that means that side effects last for 30 days too, so great care has to be taken with dosages. There is a good chance that people diagnosed with schizophrenia will have to take medication for the rest of their lives. Since the average age of onset of schizophrenia is about 18, that could mean 60 or more years of medication—a daunting prospect to even the most stalwart of parents. There’s all the more reason, then, for families to be aware and informed about what the medication can and cannot do and what the side effects are likely to be and to make sure that their child’s progress is closely monitored. An essential component of the treatment of schizophrenia is management. In recent years there have been great advances in the long-term management of this disorder, which usually includes rehabilitation and occupational therapy.

The prognosis for childhood onset schizophrenia has not been well
studied, but we know something about the outlook for adults and adolescents. We know, for instance, that the earlier the onset of the disorder is, the poorer the prognosis will be. In some rare cases there is full remission, but “deterioration with no return to baseline” is the more likely prospect. What’s more, most people with schizophrenia are not going to be high achievers after the disorder has struck, not even the ones who started out as valedictorians of their class. The typical person with schizophrenia is unlikely to hold a significant job or to maintain a marriage or any other successful long-term relationship. Women with schizophrenia have been more likely than men to get married and have children, but there is no question that a severe relapsing disorder impairs a person’s ability to interact with others. Not surprisingly perhaps, some 25 to 50 percent of all people with schizophrenia will abuse drugs or alcohol, and there is a very high suicide rate attached to the disease, the highest of all the psychiatric disorders. According to recent studies, 35 percent of all people diagnosed with schizophrenia will attempt or will seriously consider suicide at some time. About 15 percent of all people with schizophrenia will commit suicide.

The parents of Deborah, the five-year-old girl who thought she had a baby living in her throat, thought at first that their daughter’s illness was their fault. They had just had a second child, and they were sure that the new baby was upsetting their older daughter and making her feel unloved. “She wasn’t ready to share the limelight. I’m sure she’ll be okay if we just pay more attention to her,” Deborah’s mother said.

Geoffrey’s parents also blamed themselves for what happened to their son. Geoffrey, a seemingly healthy, happy, overachieving young man, went off to Harvard in September. His goal: a bachelor of arts degree and then law school. By November of his freshman year he was back home with his parents, being treated for schizophrenia. “I’m sure it’s because we pushed him too hard,” his father told me. “He was doing fine.”

“And he would have stayed fine if he’d gone to City College,” his mother added. “Why did we make him go to a high-pressure university like Harvard?”

So many parents reproach themselves for things they could have done and should have done. “I should have seen this coming,” they’ll say. “Remember how quiet he was, even back in third grade? I should have known something was wrong. If I’d done something about it then, this never would have happened.”

It’s not hard to understand why Deborah’s and Geoffrey’s parents and just about all other parents of children with schizophrenia feel the way they do. Schizophrenia has no satisfactory explanation and a terrible prognosis, so taking the blame can be a comfort to many parents. “If it’s our fault, then maybe we can fix it,” the thinking goes. It’s often easier to accept the blame than it is to accept the truth.

The truth, whether parents like it or not, is that it’s
not
their fault their child has schizophrenia. It’s nobody’s fault. Having a new baby brother or matriculating at Harvard can create stress in a child or an adolescent, true, but it does not bring about a psychotic episode. Little kids have baby brothers every day and teenagers go away to college every September, and most of them get through it just fine. They don’t always love or even welcome the changes in their lives. Some are even made uncomfortable by them. But discomfort is a long long way from psychosis.

It’s not usually necessary to urge parents to get prompt treatment for children who have the symptoms of schizophrenia. Mothers and fathers can and often do ignore the symptoms of other brain disorders, or at least they take their time having the child looked at, but there’s a certain urgency associated with schizophrenia that simply will not be ignored. When a child has a break from reality, most parents will head straight for an emergency room, and from there they’re sent to a child and adolescent psychiatrist. Most of the children with schizophrenia I see are sent not by a pediatrician but from a hospital emergency room.

Of course, there are exceptions. One girl I treated had her first break at age 16, almost exactly a year before her parents brought her to see me. They had been in family therapy for most of that year, but it didn’t seem to help. She continued to have paranoid delusions, mostly about people following her and thinking bad thoughts about her. When she was driving her car one day, she thought that a young man who pulled up next to her at a traffic light was planning to kill her.

I’ve come across parents who refused to be involved with their children with schizophrenia or even to see them after they got sick. One woman wouldn’t allow her son in the house after a few particularly
bizarre outbursts, and eventually she refused to see him at all. His father visits him every Sunday without his wife.

Having a sick child is never easy. When that child is diagnosed with schizophrenia, it is incredibly difficult for parents. From the moment a child is born, parents have hopes and dreams and plans for that child. In some ways they think they’d like to keep their kids small and helpless forever, but not really, of course. All parents look forward to the day that their kids become independent. They want their kids to go to college, get a job, get married, have kids, move away but not too far. They look forward to having an adult relationship with their child.

When a child has schizophrenia, those hopes and dreams will probably not be realized. A child with schizophrenia will in all likelihood not become an independent adult, capable of having an adult relationship with his parents. Even when he reaches maturity, he’ll depend on his parents for many of his needs. He probably won’t get a good job, marry, or have his own home. Coming to grips with these cold, hard facts is a truly heart-wrenching experience for parents. Some look for and find solace in therapy or in support groups. One of the most widely respected is the National Association for the Mentally Ill. NAMI offers a wide range of resources that have proved invaluable to parents of children and adolescents with schizophrenia.

It’s natural and healthy for parents to grieve over their loss, because that’s what this is. One of my colleagues describes it as “mourning the loss of what you expected from your child.” After that mourning period is over, parents can get on with the new relationship they must forge with their child. The new relationship is not what Mom and Dad had in mind when the new baby was born, to be sure, but any parent-child relationship has enormous satisfactions.

Here’s how one mother described her feelings about her son, now in his late twenties, who had been diagnosed with schizophrenia nearly ten years earlier. “For a long time I walked around in pain. It was as if my old son had died, and I was grieving for him. His personality and his sense of humor just weren’t there anymore. His ‘essence’ was missing. But then I realized I had a new, different son in his place, and I started to feel better. I miss my old son—I’ll probably always miss him—but I love the new one too, very much.”