Prodromal Schizophrenia Stories: Our Family’s Journey from Early Onset Through Ongoing Treatment

About 75 percent of people diagnosed with schizophrenia go through a prodromal phase. This early stage of the psychiatric disorder is characterized by troubling symptoms but not full psychosis. It can serve as an early warning system, and patients benefit from early treatment before a diagnosis of schizophrenia. Unfortunately, not everyone knows about this condition and may ignore signs until it is too late for early interventions. Learning more about this mental illness and all its stages can lead to better, earlier treatments and more positive outcomes for individuals and their families.

Prodromal schizophrenia is an early form of this severe and difficult mental illness. It can be scary, troubling, and confusing. The blessing of prodromal schizophrenia is that it is a warning. It allows individuals and families to do something, to get treatment earlier than they would otherwise.

For some people, that early action makes a huge difference. Researchers have found that early application of the right medicines and psychosocial treatments can delay the onset of full-blown schizophrenia and psychosis. Families willing to share their stories about early-onset schizophrenia are helping others learn more about this important phase and what to do next.

How We Noticed Signs of Prodromal Schizophrenia in Our Son

Our son Adam had always been a social boy. He loved people, was never shy, and had so many friends. He was the typical popular kid. I think this fact is what most helped us recognize the early onset of schizophrenia. If he had been a more withdrawn child, even shy or introverted, we may never have noticed until full-blown symptoms set in.

What we first picked up on was his withdrawal. It started in his last year of high school, just as he turned 18. At first, his father and I assumed he was just struggling to adjust to the idea of graduating and becoming an adult. Eventually, most of his friends dropped away. He quit basketball, a passion he’d had since elementary school. Instead of going to school events and football games, he locked himself in his room.

We only learned later that this social isolation was a key sign of prodromal schizophrenia. We also learned that some of his other behaviors at that time lined up with the diagnosis: ignoring personal hygiene, struggling at school, saying odd things at unusual times, and suddenly not talking much anymore. All of this was so unusual for our son, we contacted our pediatrician thinking he might have depression.

The Shock of Getting a Schizophrenia Prodrome Diagnosis

The thought that my son was depressed was upsetting, but it seemed manageable. A lot of people live with and manage depression. I knew we could cope and he would get better. But when our doctor referred us to a psychiatrist, I started to worry. Was it more serious?

After a series of tests and observations, the psychiatrist diagnosed Adam with prodromal schizophrenia. She explained that many people with schizophrenia go through this stage and that it often goes unnoticed. She said we were lucky, but it didn’t feel that way.

Suddenly my son’s mental health didn’t seem manageable at all. I had an idea of what a schizophrenic was in my head and it was bad. I worried he would never live a normal life, never have full independence, or even go to college.

The psychiatrist outlined symptoms of schizophrenia that didn’t ease our minds: hallucinations, delusions, paranoia, disordered thinking and speaking, difficulty organizing thoughts, lack of awareness about having an illness, and becoming emotionally flat or distant. I started grieving my happy little boy.

Acceptance and Beginning Treatment

The psychiatrist assured us that early intervention now would help Adam in the future so, of course, we agreed to it. I can’t say I had accepted the diagnosis yet, but I knew we had to do what was necessary to give him the best outcome.

Because he was already 18, she recommended residential treatment for prodromal schizophrenia so he could really dive deep into treatment and get the tools he needed to delay schizophrenia or at least learn to manage it. We were both hesitant to let him go, but it made sense.

Taking him to treatment proved difficult. He didn’t want to go, and as an adult he didn’t have to go. What we all needed was to accept the diagnosis. The psychiatrist had given us some resources to learn more. I assigned everyone, including Adam’s younger sister, the reading material, and then called a family meeting.

We have always been a close family, but talking about this was still tough. It took some awkward starts to get the conversation going. What Adam could admit and accept right then was that he didn’t feel right, that he didn’t have friends anymore, and that his life used to be better. That was all we needed to get him into treatment.

Our Prodromal Schizophrenia Treatment Experience

We dropped Adam off, hopeful and reassured that we would be participating after he settled in and got stable. From regular updates we knew the staff began trying medications with him, trying to find one to stabilize his moods and bring him back to normal at least a little. He started one-on-one therapy and support group sessions.

What was great about the facility was that they also took a holistic approach. This included changing his diet and supplementing with omega-3 fatty acids. I was surprised to learn about dietary changes as part of treatment but found out that certain fatty acids aid in the treatment of psychiatric disorders.

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Supporting Our Son in Treatment

When we finally got to visit and participate in family sessions, seeing Adam was wonderful but also a shock. He had gained some weight from the medication but also seemed much more like his old self. I was under no illusions that he had been cured, but clearly the medications and therapy work had helped already.

As a family, we began regular therapy sessions. It was a great learning experience. It gave us insight into what Adam was doing in therapy and the tools he learned to help him later, outside of treatment. We worked on communication, understanding his illness, and the best ways to support him.

We also participated in some family support group sessions. This gave us a chance to learn from other parents and siblings and to share our own experiences in a safe environment. It was okay to vent and to complain, but ultimately we came away with a more positive attitude about mental illness and Adam’s future.

Coming Home and Moving on

When Adam came home, I resisted the urge to make a big deal out of it. I wanted to throw a party and celebrate, but I knew he wouldn’t want that. We had two of his oldest friends and his closest cousin come over a few days later so he could begin reestablishing relationships and practice new skills with people he trusted.

On the advice of the treatment center, we also had Adam keep up with outpatient therapy sessions. These have been so helpful when he has needed to adjust his medication or when symptoms cycled back and became more severe again. We think of the ongoing therapy as tune-up sessions.

Adam won’t be going to college when we all assumed he would, but he is improving all the time. Even with setbacks, his fight to regain a sense of who he used to be is impressive and successful. We certainly live with the dread that he will one day worsen and get the diagnosis of schizophrenia, but for now, we’re hopeful. He’s at home, working a part-time job, and getting ready to go to college next year.

Recognizing his early symptoms and acting on them were the best things we could have done for our son. I encourage anyone who sees troubling behavior changes in their child, at any age, to see their doctor. Don’t be afraid to talk about mental illness. The earlier you address it, the better off your child will be.

If you’re concerned about a loved one and believe they may need residential care, we can help. BrightQuest offers long-term treatment for people struggling with complex mental illnesses. Contact us to learn more about our renowned program and how we can help you or your loved one start the journey toward recovery.