My son just had his first psychotic episode. What should we expect?

What is the key fact?

In the National Institute of Mental Health (NIMH) RAISE study (American Journal of Psychiatry, 2016), young people in team-based coordinated specialty care stayed in treatment longer, improved more in quality of life and symptoms, and were more involved in work and school over two years than those in usual care.

What are you carrying?

You may have watched your loved one become someone you barely recognized, over weeks or overnight. You may be scared, exhausted, and searching for answers at 2 a.m. while keeping the family steady.

What the research shows

A first episode of psychosis is not rare. The NIH Director wrote in 2015 that about 100,000 adolescents and young adults in the U.S. experience one each year.

A 2017 review in the British Journal of Psychiatry found that 58% of people with a first episode reached remission over an average of about five and a half years, and 38% met criteria for recovery over about seven years.

Recovery rates held steady after the first two years, and the authors concluded that a steadily worsening course is not typical.

The NIH Director also noted that the longer psychosis goes untreated, the harder symptoms are to stabilize. In RAISE, those who started care sooner did better.

What happens next?

1. Ask about a first-episode psychosis program. Often called coordinated specialty care, these teams offer medication support, therapy, family education, and help with school or work. Family members take part in decisions.
2. Write down what you've noticed. Note when changes started, plus sleep, substance use, stress, and medical history. Providers can listen to family members even without a release, which helps them see the full picture.
3. Ask your loved one about signing a release of information. It lets the care team keep you informed and include you in planning.
4. Make a plan for early warning signs. With the care team, name the changes that came before this episode and who to call if they return, so everyone can respond sooner. A family safety plan is one way to write that down. After a hospital stay, what to do after a crisis covers the first days home.
5. Ask about help with school or work. Many programs offer a coach who helps your loved one return to school or work and the life they were building.

What helped other families

From the community. Family members who've been through this shared what helped them. These are their experiences, not professional advice.

• One parent said it took a while to find the right help. Once an early intervention team took over, things improved, and family sessions felt "really insightful."
• Parents in a family forum kept daily journals of their loved one's behavior and sleep, which showed how little sleep came before a hospital stay. One wrote that "journaling is the one thing we can do that is helpful."
• A parent recalled being in the same shoes three years earlier. Their loved one left school, later went back and finished a degree, then found a job and an apartment.

Programs where you live

Many states fund first-episode psychosis programs in part through federal mental health block grants. Illinois | Wisconsin for programs and where to start.