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Raising a child with mental illness: What I wish I’d known

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By Dorothy O'Donnell

6. Track your child’s moods

I wish I’d been more consistent about tracking my daughter’s moods and symptoms early on. Over the years, I’ve learned that recording things like sleep problems, changes in her energy level, and any new or unusual behavior provides valuable information for me, her treatment team, and school staff. Charting her moods helped me learn to recognize signs that she was becoming unstable, as well as potential triggers. For example, I now know to expect a surge in her irritability and anxiety levels several weeks before the start of a new school year. Arranging a quick introduction to her new teacher before school kicks off helps ease some of her stress.

Having a record of Sadie’s moods also makes it easier for her psychiatrist to determine if a medication adjustment is necessary. And it helps her therapist work with her on specific problems as they come up. If your child doesn’t have a diagnosis yet, charting symptoms will help any professional who evaluates your child. You can find a variety of free mood charts online at The Balanced Mind Foundation, or simply jot notes in a journal or on your smartphone.

7. Stay connected

At first I avoided forums for parents of kids with pediatric bipolar disorder, but I now visit them regularly when I have questions about medication, alternative therapies, school problems, and other matters related to her illness. Even when I’m not comfortable participating in a forum, I find that just reading posts from other parents is helpful. While I’d never make a treatment decision without first consulting her psychiatrist or therapist, I’ve found that forums on The Balanced Mind Foundation’s website  are a great place to learn from others dealing with the same issues. The website also provides online support groups, articles, brochures, and a bounty of other useful information, including tips for educating school staff and treatment guidelines.

8. Diagnosis — a moving target?

There are no easy answers when it comes to diagnosing and treating kids with mental disorders and, let’s face it, it’s an evolving field. Not only can children with the same diagnosis have very different symptoms, but the same illness can have radically different symptoms and strains. For example, there are three distinct types of bipolar disorder: bipolar I, defined by manic or mixed episodes (mania and depression occurring together), or by severe manic and depressive episodes; bipolar II, characterized by depressive episodes with milder mania; and Bipolar Not Otherwise Specified (BP-NOS), when symptoms don’t precisely meet the criteria for either bipolar I or II.

Not only that, but your child’s diagnosis can change. Sadie’s first doctor diagnosed her with bipolar II. Her current doctor believes she has BP-NOS.

As psychiatry continues to evolve and science reveals more about mental illness, diagnosis and treatment options continue to change as well. For example, the latest version of the Diagnostic and Statistical Manual of Mental Disorders  (DSM-V) used by mental health professionals to diagnose patients, includes a new condition, “Disruptive Mood Disregulation Disorder (DMDD),” to describe kids whose main symptom is consistent, severe temper outbursts. In the past, kids with these symptoms were often incorrectly diagnosed with bipolar disorder — or not diagnosed at all and unable to get help.

To further complicate matters, the National Institute of Mental Health recently shook up the psychiatry world by withdrawing its support of the DSM. The NIMH is developing its own diagnostic manual that will emphasize the biological roots of mental disorders and rely on genetics, imaging, cognitive science and other information to diagnose them instead of the DSM’s symptom-based approach.

This constantly shifting landscape means it’s essential to keep up with the latest findings and, just as important, to make sure your child is seeing a mental health professional who keeps abreast of the new research as well.

The journey continues

Sadie is in a much happier place today — she has friends and many passions. Yet just when I think I’ve got everything figured out and we’re in for smooth sailing ahead, things change again. A long streak of stability will be disrupted for reasons neither I nor her treatment team can always explain. And I know we’re likely to hit more bumps in the road as she grows and matures. The jury is mixed about how kids with mental disorders like bipolar disorder and ADHD fare as adults. Some get better, others continue to suffer and can even get worse. My learning curve may not be as steep as it once was, but I don’t think it will ever end.

Dorothy O’Donnell has written about travel, health and business for a variety of publications. Her essays on motherhood have been featured in the Marin Independent Journal, Mothering and on KQED radio. She is working on a memoir about raising her daughter.