March 11, 2010 -- ABC News spent almost eight months profiling three families in Southern California whose children suffer from childhood schizophrenia.
Last spring, 7-year-old Jani Schofield was diagnosed with schizophrenia, in part because of her incessant hallucinations that she says command her to hit and bite people. Brenna Wohlenberg, 14, has not yet been diagnosed with schizophrenia, but she says sinister spirits instruct her to become a serial killer. Her 12-year-old sister Ailish also struggles with hallucinations and violent inclinations.
Click here for more on each family's struggle with childhood schizophrenia.
We decided to put to paper many of the questions the parents we profiled are constantly asked. Even though some questions seem unanswerable, the families try to do the best they can to explain how they live with such a ravaging disease.
Schizophrenia: Diet or Behavior-Based?
Many people wonder if simply adjusting the children's diets would make a difference.
"[Jani] will starve herself rather than eat if she doesn't like the food," says her father Michael Schofield, who regularly blogs about his daughter's schizophrenia. "Assuming she will eat when she gets hungry enough is a logical idea. Schizophrenia isn't logical."
Jennifer Wohlenberg, mother of Brenna and Ailish, tells ABC News she has tried numerous diet changes.
"The girls' diets were severely restricted when they were young due to Ailish's numerous severe allergies," says Wohlenberg, who also maintains a blog about her family. "They were off gluten completely, off nearly everything, and it did not affect their behavior."
Jennifer Wohlenberg also tells ABC News that many people have suggested her daughters' problems are more behavioral than psychiatric.
"I read every discipline book I could get my hands on," she says. "I believe I have been very consistent with discipline and follow through. No motivation or punishment works unless the girls are in a good space. They want to be good girls, it's just that sometimes, they can't."
Is There a Spiritual Cure to Schizophrenia?
The families also sometimes receive suggestions of a less traditional nature, such as trying to have their children cured in a spiritual way.
"If any of those 'miracle cures' worked," says Michael Schofield, "Then those people would be very famous and very rich."
Just an Excuse to Behave Badly?
Another question the parents are asked regularly has to do with the somewhat controversial issue of diagnosing children with severe mental illness at such an early age.
Jennifer Wohlenberg is often asked why she is so open with her girls about the diagnoses. Is she giving them an excuse to behave badly?
"When the girls were younger, it was very difficult because for a long time, we did believe that it was just a matter of discipline," Jennifer says. "Once we had a diagnosis, it helped all of us to know that the girls did want to behave, it's just that at times, they can't. This does not excuse them, and we hold them to the consequences of their behaviors, but we want them to know as much as they can about their diagnoses so that they don't feel entirely powerless."
Side Effects From Medications?
Perhaps the most frequent questions the families answer are about the myriad medications their children have consumed over the years, all aimed at easing the devastating effect of the hallucinations. As parents, are they concerned that the medications, often only tested in adults, could be damaging to their children?
"Absolutely," says Jennifer Wohlenberg. "We are always cautious about the medications they take, and [the girls] are tested regularly to check for side effects on their liver, their blood counts, their glucose and cholesterol levels. Of course, we don't want to make their lives worse from taking these medications, but research also shows that protecting their young brains from manic episodes can help decrease the severity of their disorders in adulthood."
"I am not going to torture Jani by subjecting her to untried methods in lieu of medications," says Michael Schofield. "Yes, the medications have side effects, but they make it less likely that she will run into traffic or jump off a roof because her hallucinations tell her so...whatever other options are pursued, medication must be the cornerstone of any treatment for psychosis because it is the best option we have."