JBRF's February 2022 Newsletter Contents:
- Back to Basics: What is Fear of Harm?
- Wednesday Webinars!: What's Coming Up?
- Fundraising Footnotes: Thank you!
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Back to Basics:
What is Fear of Harm?
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We spend a lot of time talking about Fear of Harm and how it impacts kids. But, let's take a moment to get back to basics and look at what the diagnosis Fear of Harm actually is.
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Alice's Story
Alice* is an artistic and intelligent child, but she is on her third school placement. From the time she was a baby her parents noticed certain things were different about her experience.
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She was always very hot and sweating even when it wasn’t hot out. Growing up Alice often refused to wear a coat in the winter and was constantly kicking off the bed covers. Often she’d wake up in a pool of sweat, having had terrifying nightmares that no one could explain. She was often afraid to go to sleep.
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Alice worried about everything, howled when she was separated from her parents, and often demanded to sleep in their bed.
Alice had a lot of trouble waking up in the morning despite the fact that she never wanted to go to bed at night and had trouble falling asleep. She’d get angry when awakened in the morning and she always had dark circles under her eyes. Criticism crushed Alice, making her defensive and angry. She complained constantly of being bored and couldn’t handle waiting. It was hard for her to keep friends because of her need to control things around her and her tendency to be argumentative. She’d erupt in a rage when her parents tried to set limits. Alice was irritable much of the time, and had fast and unexpected changes in her mood throughout the day. Recently, she seemed to be taking a dark turn, with brooding, cursing, and getting lost in gory graphic novels.
Alice had seen multiple doctors and multiple counselors. She’d been diagnosed with ADHD, depression, and an alphabet soup of other labels (ODD, OCD, CD, DMDD**) each of which almost but didn’t quite fit. Alice had been given a host of stimulants like Ritalin and Adderall, as well as antidepressants like Zoloft and Prozac, but nothing seemed to do much good. In fact, sometimes, they even seemed to make things worse, causing more irritability, agitation, and abrupt mood changes.
Alice’s parents, her doctors, and her counselors were left wondering, what is Alice suffering from, and how do they help her?
The truth is that Alice’s history shows symptoms of a new disorder, that many practitioners haven’t heard of yet, which makes it harder to get the right treatment. Alice, like thousands of other children, suffers from a specific subtype of Juvenile Bipolar Disorder called Thermoregulatory Fear of Harm Mood Disorder, or Fear of Harm for short. Dr. Demitri Papolos, lead researcher for the Juvenile Bipolar Research Foundation, and the author of the book, The Bipolar Child , explains, “Juvenile Bipolar Disorder and Fear of Harm are major social as well as medical issues.” A study of over 5,000 youth diagnosed with bipolar disorder suggests that roughly one-third have Fear of Harm. With an estimated 750,000 kids suffering from bipolar disorder that would mean that nearly 250,000 children suffer from Fear of Harm . “These children are usually misdiagnosed, and the typical medication treatments used can make them more aggressive,” explains Dr. Papolos. This can lead to escalating problems at home, at school, in social groups, and can even lead to encounters with law enforcement and the juvenile justice system.
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The Breakthrough Discovery
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After eight years of research, doctors identified Fear of Harm as a type of bipolar disorder, which includes symptoms of aggression, extreme anxiety, and intense fear that harm will come to self or others. But what makes Fear of Harm unique is that it includes, for the first time, a physical symptom . Among the other symptoms, kids with Fear of Harm feel hot most of the time, even when their environment isn’t hot. This is a sign that their bodies can’t regulate their temperature properly. Doctors call this a “thermoregulatory disturbance”, and it plays a significant role in the development of all the behaviors that go along with Fear of Harm.
This inability to control body temperature also disrupts sleep because with body temperature rising, when it’s supposed to be getting lower as night falls, kids with Fear of Harm have problems falling asleep, sleeping peacefully, and getting up in the morning. Worse, the kids frequently have terrible violent nightmares, and relive seeing the images whenever they close their eyes. Their brains experience this imagery as if it’s real, and they develop symptoms of PTSD, including a fight or flight response even when there isn’t anything threatening happening. This ongoing feeling of fear and misperception of threats leads to all sorts of other behavioral problems.
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With the discovery of Fear of Harm researchers knew they had to figure out how to treat this new illness. Researchers found a medication that was already known to reduce fear sensitivity, reduce body temperature, and had been shown for years to be safely used in children. With its fear and temperature reducing effects researchers believe this trusted medication is part of the solution for kids with Fear of Harm. Their findings show that it can be a safe and effective long term treatment, offering hope for thousands of children and families.
For Fear of Harm patients once they’ve received the correct diagnosis, and access to the effective treatment, the change is quick and noticeable. Treating the temperature dysregulation results in a reduction of manic behaviors, fear, anger, and aggression. It improves patients’ mood, reduces anxiety, and the behavioral symptoms fade. “For children and adolescents with Fear of Harm, accurate diagnosis and treatment can be transformational,” says Dr. Papolos. “I believe there are many, many more children out there who can benefit.” The bottom line is that those with Fear of Harm can experience a dramatic change for the better in their lives. As one mother said, “The effects of treatment have been nothing short of miraculous.”
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*To protect patient privacy this patient profile is drawn from multiple real examples originating from multiple patients. ** ODD, Oppositional Defiant Disorder; OCD, Obsessive Compulsive Disorder; CD, Conduct Disorder; DMDD, Disruptive Mood Dysregulation Disorder
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Wednesday Webinars!
Coming Up Next Week...
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Join JBRF for February's Webinar:
Understanding the Misunderstood:
Childhood Bipolar & Fear of Harm
Wednesday, February 16th,
7:30-8:30pm eastern time
Finding the right diagnosis and the right treatment for kids can be overwhelming for parents and practitioners. Join JBRF as we get back to basics to understand childhood bipolar disorder & Fear of Harm.
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- Why are kids so often misdiagnosed with other disorders?
- What does bipolar look like in kids?
- What makes childhood bipolar different from the adult version?
- How do you recognize Fear of Harm?
- What's the treatment for Fear of Harm?
- What can I do to help my child?
- How can I better help my clients?
Join us for all this plus a live Q&A with executive director, Elizabeth Errico.
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We're excited to announce that our 2021 Year End Fundraiser ended on a high note:
- Every pledge has been fulfilled;
- Every matching offer was met; and
- We exceeded our ambitious goal for the month of December!
Thank you to everyone who made this event such a success!
As Valentine's Day approaches consider a small gift in honor these amazing kids with Fear of Harm who we hold close in our hearts.
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JBRF supports children and families suffering from bipolar disorder and
Fear of Harm through research, education, and outreach.
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