QUICK POINTS:

  • Fear of Harm (FOH) is a “syndrome” or collection of behaviors and symptoms which occur along with a trait called fear-of-harm. The trait, which is heritable, is one of obsessive fear that harm will come to self and/or others.
  • Click here to see a list of those behaviors and symptoms.
  • Since FOH is a heritable condition, some children are much more affected by it than others.
  • Children with FOH have an unusually high perception of threat. The threat can be real, imagined or psychotic.
  • Children with FOH typically react negatively when they feel threatened. This can be expressed as confrontation, defiance, blame, bullying, retaliatory threats, attacks, and even rage. Sometimes the child turns the aggression inward on him or herself.
  • Children with FOH have extremely high levels of anxiety.
  • A long term consequence of  FOH is the development of maladaptive behaviors.
  • Improper body temperature regulation is a prominent feature of FOH. Children are most often too hot and very tolerant of cold.
  • Disturbances of sleep are often severe. Children have difficulty falling asleep, staying asleep, and waking up. Sleep is often plagued with terrible night mares/night terrors.
  • Other characteristics of FOH include: Daily escalation of energy, Rapid shifting of mood, Poor self-esteem regulation, Poor frustration tolerance, Strong drives, Strong interest in gore and violence, Executive Function deficits, Hallucinations, Psychosis,  Sensory sensitivity, and Contamination sensitivity.
  • While this condition can be very severe and life altering, when the symptoms are quiet, children with FOH are typically loving, insightful, bright children. They often feel terrible remorse that they cannot better control their reactions, their thoughts and their lives.

 

DISCUSSION:

Fear of Harm (FOH) is the name given to a severely impairing, life-long condition which includes both behavioral and physical symptoms. JBRF-sponsored investigators defined the illness by looking at the comprehensive symptom profiles of several thousand children who were diagnosed with bipolar disorder or considered to be at risk for the disorder due to strong family histories of illness.

Because they were willing to look at this broad picture, rather than just the children’s manic or depressive symptoms, they were able to identify a heritable trait which they called fear-of-harm. Simply put, the child experiences obsessive fear that harm will come to him or herself or to others, or that they will somehow cause harm to themselves or to others. Investigators then went back into the data base of profiles and were able to determine which of the symptoms and behaviors associated with the trait. Together, these symptoms and behaviors describe the syndrome which is now called the Fear of Harm (FOH) phenotype. (see How Was the Fear of Harm Trait Defined or click Fear of harm, a possible phenotype of pediatric bipolar disorder: A dimensional approach to diagnosis for genotyping psychiatric syndromes for the published article.)

Like bipolar disorder, FOH includes manic and depressive symptoms. However these are just two of the characteristics of a much broader syndrome. It also includes sleep disturbances, anxiety, aggression, temperature regulation problems, poor self-esteem regulation, psychosis, cravings, attention and more. Please click here to see a more detailed list of the symptoms which describe the illness.

In addition to a bipolar diagnosis, children with FOH typically have one or more co-morbid diagnoses. The most frequent are: mania, major depression, separation anxiety disorder, generalized anxiety disorder, obsessive-compulsive disorder, oppositional defiant disorder, conduct disorder and attention deficit disorder.

Every child is unique

It goes without saying that all children are different from the git-go. Additionally, the degree of FOH that a child inherits can range from profoundly debilitating to much less so. So, while generalizations can be made about the behaviors and symptoms of FOH, as you read the information below, it is important to remember that they all exist on a continuum. In fact, seeing the more subtle versions, the FOH-lite as we call it, is certainly harder than seeing the glaringly obvious one. That said, it is probably fair to say that all children affected by FOH face significant burdens and deserve the best understanding and support that we can provide to them.

Fear of Harm/Threat

A child with FOH is hyper-vigilant to threat; real, imagined or psychotic. They regularly perceive obvious and/or subtle forms of threat from people, places, things, social interactions and otherwise normal routines. Their worlds are filled with bad guys, mean people, lurking monsters, dangerous places, potential accidents, and unknown outcomes. The list can be heartbreaking.  Their thoughts often turn to death and they can worry obsessively about being killed or about harm/death coming to people who would otherwise protect them from the things that frighten them.

Further, they are overly sensitive to blame, criticism, refusal, disappointment, expectations, rejection and loss –all common occurrences in daily interactions with parents, teachers and peers. Whereas no child prefers to be criticized or disappointed, for children with FOH it feels like an attack. (read more)

Aggression

A prominent feature of FOH is that, in response to any of the types of threat described above, the child will most likely react in a manner to make it go away. Depending upon how threatened the child feels the negative reaction can range from ignoring or deflecting the situation, to confrontation, swearing, lying, and bullying, through to tantrums, aggressive attacks and full blown rage of enormous strength. Sometimes the child turns the action inward on him or herself with abuse ranging from skin picking and cutting to head banging, self-inflicted injury including laceration and broken bones and/or (attempted) suicide. (read more)

It is important to bear in mind that it is a defensive type of reaction. This distinguishes it from other forms of aggressive behaviors. Because of its defensive nature, investigators characterize many of these difficult behaviors as territorial aggression; the protection of things needed to promote survival.

Regardless of whether this perspective of the aggressive behavior makes it more understandable, it doesn’t diminish the effect it has on others. Not surprisingly, children with FOH have significant problems at school, with other children and at home.

[Note: The constant ‘on-guard’ state and range of aggressive reactions that the FOH child exhibits could be characterized as chronic irritability with episodes of rage. This is the singular focus of the new diagnostic classification DMDD. We believe that this behavioral pattern is only a partial description of a broader illness and when isolated from the other important characteristics of FOH, it is not meaningful from a diagnostic or research point of view and harmful from a treatment point of view. (See DMDD: A New Classification for DSM)]

Anxiety

Anxiety among children with FOH can be profound. The obsessive fears and high vigilance described above make anxiety a constant and impairing companion.

High and constant levels of anxiety lead to a repertoire of avoidance behaviors. School is a particularly difficult arena with its measures of academic and social performance not to mention the stress of problematic or chaotic routines. As such, school refusal is very common.  Other forms of avoidance include efforts to stay safe: the constant need for a parent’s presence, sleeping with the light on, not trying new foods or experiences, etc.

As the years of avoidance behaviors become well established, they leave a psychological layer that is difficult to undo even when progress is made in other areas.

Because so many anxious behaviors are common in children with FOH, they are frequently diagnosed with many of the anxiety based disorders: separation anxiety disorder, social phobias, panic-disorder, obsessive compulsive disorder and post-traumatic stress syndrome.

NOTE: To read more about the type of fear, aggression and anxiety which accompany FOH, click here.

Body Temperature

Children with FOH are hot: They often wear T-shirts when others are wearing sweatshirts. They can sweat or overheat in conditions where others don’t. They typically sweat profusely at night and kick off their covers. Waves of heat can course through their bodies. Their faces often flush (sometimes right before a meltdown/rage) and sometimes the lobes of their ears turn red. Far less frequently, the opposite occurs where the child is too cold.

In preliminary studies, the investigators have found that children with FOH have some sort of problem with body temperature regulation. They believe that it has to do with how their bodies dissipate heat in order to maintain the correct internal temperature.

We have found that this set of symptoms, more than any other, causes that “aha” moment for parents. Body temperature regulation is not something that has previously been associated with behavior. However investigators believe that it is critically important and likely to lead to the cause of this illness. (see FOH and Body Temperature),

Sleep

Sleep is a very difficult and often scary place for children with FOH. It can take them a very long time to actually fall asleep. Once they do fall asleep, they are frequently haunted by terrible nightmares in which they experience a degree of violence, mutilation and pain that goes further than what occurs in regular sleep patterns. The dreams are often filled with terrifying or extremely upsetting themes in which they are pursued by others (or monsters) or in which they do terrible things to someone else. Some children experience night terrors during which they seem to be awake but cannot pull themselves out of the action of the dream.

Other problems include grinding teeth, bed-wetting well beyond an appropriate age, and difficulty staying asleep; they wake up several times a night rather than falling into a deep and restorative sleep.

Additionally, many of these children have an extremely difficult time waking up. They simply cannot rouse themselves at an appropriate time. This difficulty can range from morning battles to situations in which the child will literally fall on the floor like a sack of potatoes.

It is not difficult to imagine the huge lingering effect that this irregular sleep can have on the child’s day. He or she is physically and emotionally exhausted. They get no break from the fears they experience during the day and, in fact, the nightmares only reinforce the unending sense of threat.

NOTE: Would it surprise you to learn that going to sleep, sleeping well and waking up are all regulated in large part by body temperature?!? That relationship, and the strong presence of both characteristics, increases our confidence that the pieces to this puzzle are pulling together.

Other Characteristics

  • Daily escalation of energy: In general, children with FOH have a low level of energy in the morning which escalates during the day. There is typically a difficult period around dinner time and they can reach a high level of energy prior to bedtime.
  • Rapid shifts of mood: Each child is unique in terms of where they fall on the behavioral spectrum between depression and mania. But within their individual range, the children can shift rapidly and unpredictably between moods many times within each day. Shifts into or out of difficult moods occur either spontaneously or can be rapidly triggered by events, interactions and/or expectations. Sometimes the shift is as sudden and dramatic as to be like a switch turned on or off.
    • Manic behavior: Along a continuum from mild to extreme, children can be giddy, goofy, and attention-demanding. They may be particularly enthusiastic for their usual activities, be expansive for new activities (often of a risky nature) and/or overestimate their own (or other’s) value. They can speak rapidly, have racing thoughts and/or be more argumentative or bossy than typical. They also can have a reduced need for sleep.
    • Depressed behavior: Along a continuum from mild to extreme, children can be filled with sadness, anxiety, self-loathing, and hopelessness. This can be accompanied with increased negative perceptions of self/events/people and recurrent thoughts of death and suicidal ideation. They are likely to have low motivation, decreased ability to concentrate and/or a loss of interest in things previously enjoyed; all of which lead to a feeling of intense boredom. The child might isolate, sleep excessively, speak more slowly and have a decreased appetite.
    • Irritable behavior: This is the chronic “on-guard” state of vigilance from which the child is quick to react negatively. Any parent of a child with FOH can tell you that they walk on eggshells careful to avoid the triggers. It is never far below the surface. In its most extreme form it escalates to rage.

Like all behaviors, mania, depression and irritability are expressed along a spectrum of severity which is influenced by genes, environment and circumstance.

  • Poor self-esteem regulation:  The child’s sense of self can range from unrealistically positive to overly pessimistic; largely in relation to the current state of mania or depression.  In a manic mind set, the child can be arrogant and overly-optimistic and believe him or herself to be all-knowing, superior to authority figures and even possess super-powers. When the mood is depressed, they can be self-critical with intense feelings of shame, humiliation, worthlessness and insecurity.
  • Poor frustration tolerance: It is particularly difficult for the child with FOH to delay gratification. This is easily seen with limit setting. The child wants something and wants it now. As is discussed in the posting called “More About Fear, Aggression, Anxiety] ”, denial of that “need” is interpreted (to a greater or lesser degree) as a threat to survival. The frustration caused by waiting in line, being asked to do something that they find difficult, and of course the all challenging “no” by a parent, causes a high degree of anxiety and reaction. The range of reactions has been described above.
  •  Strong drives: Children with FOH often crave sweets or carbohydrates and may go on periodic binges and/or hoard food. Alternatively, the drive can be channeled into the relentless pursuit of needs; typically seen as an insatiable demand to buy (and hoard) things or to do something in particular. This is frequently referred to as “mission mode”. Additionally, the child may have strong, age-inappropriate sexual interests and behave in a disinhibited manner.
  • Gore and Violence: The constant occupation with violence and harm often promotes an obsessive interest in, and spillover of, gory images and violence. Even as young children, their inner worlds are expressed in the violent and fearful images in their drawings. As they get older, notes of death and horrible thoughts are not uncommon.
  • Executive Function deficits: Many children with FOH have difficulty with executive functions. These are the brain functions involved in planning, working memory, attention, problem solving, verbal reasoning, inhibition, mental flexibility, task switching, and the initiation/monitoring of actions. Problems with some of these functions are expressed as:
    • Extreme resistance or anger to unexpected changes of plans
    • Difficulty giving up an idea or desire, no matter how unrealistic it may be
    • Difficulty starting or completing school assignments or tasks around the house
    • Difficulty getting past small details in order to see the “big picture”
    • Impulsivity and over-reactivity
    • Restlessness or fidgetiness
    • Poor handwriting

The extra challenges created by these deficits contribute significantly and inextricably to the overall levels of anxiety and obstacles that the child lives with.

Because of these Executive Function deficits, many children might mistakenly receive a diagnosis of ADHD. While indeed the observed symptoms might be ADHD, there are subtle variations which would distinguish between the two conditions. (click Neuropsychological factors differentiating treated children with pediatric bipolar disorder from those with attention-deficit:hyperactivity disorder for the published article)

  • Hallucinations: Improper shifting between “states of arousal” can cause hallucinations. Rather than make clean and stable shifts into a sleep/dream state or a wakeful state, the different states can intrude on each other.  Hallucinations can be either visual or auditory. The improper temperature regulation described above may be part of the cause for this.
    • Hallucinations can be particularly common just prior to falling asleep (hypnogogic hallucination) or just prior to waking up (hypnopompic hallucination). These experiences can be quite well formed (people/things) or rather vague (streaks of color/lights).
    • A similar experience can happen when stressed. The child may drift off into a daydreaming state that may progress to mild hallucinations.
  • Psychosis: Many children experience psychotic symptoms. These are different than hallucinations as they are perceptions of things that could not possibly exist. For instance, the belief that the devil lives in their dog. Psychosis is most frequently associated with schizophrenia, but it is not exclusive to that illness.
  • Sensory sensitivity: Children can be extremely sensitive to new or repetitive stimuli. They might feel as if their clothes are too tight or too loose…or the rub of a label might drive them nuts. They may be particularly sensitive to repetitive sounds of a clock ticking…even someone breathing or chewing. Loud or unexpected sounds like a vacuum cleaner or thunder may be difficult too. They may find crowds too overwhelming or smells too strong. While these things may sound like negligible irritants, they can cause over-arousal, extreme irritation, anxiety, fear and anger.
  • Contamination sensitivity: Exposure to things that might cause harm to the body can cause obsessive fear. While germs are an obvious example, this can also include things like household cleaning solutions, certain foods, and even hypodermic needles –something that actually penetrates the skin and injects something into them.
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