WHITE PLAINS, N.Y.,
Oct. 11, 2018 /PRNewswire-PRWeb/ --
Alice* is artistic, intelligent and on her third school placement.
Her parents remember that she was always very hot as a baby.
Growing up she would constantly kick off the bed covers, often
waking up in a pool of sweat with terrifying nightmares that no one
could explain. She was often afraid to go to sleep. She would worry
about everything, howled when she was separated from her parents
and often demanded to sleep in their bed.
Alice could never seem to wake up in the morning. She would get
angry about getting up, and always had dark circles under her eyes.
Criticism crushed her. She complained constantly of being bored,
and couldn't handle delays. It was hard for her to keep friends
because of her bossiness and tendency to be argumentative. She'd
erupt in a rage when her parents tried to set limits. And recently,
she'd taken a dark turn, brooding, cursing, getting lost in gory
graphic novels.
She's seen several doctors and counselors. They diagnosed ADHD,
depression and an alphabet soup of other labels (ODD, OCD, DMDD)
that almost but didn't quite fit. She's been given a host of
stimulants like Ritalin and Adderal, as well as antidepressents,
but nothing seemed to do much good. And according to Dr.
Demitri Papolos, Director of
Research for the Juvenile Bipolar Research Foundation (JBRF), those
drugs probably won't help, and may even cause more irritability,
agitation and mood cycling.
That's because Alice, and thousands more children, likely
suffers from a specific sub-type of juvenile bipolar disorder. The
clues from her history indicate Alice may have Fear of Harm (FOH)
syndrome, which occurs in a subgroup of children with bipolar
disorder. It's a relatively new diagnosis, but it's a critical one,
because research sponsored by JBRF has not only discovered this
syndrome, it's determined there is an effective treatment for it,
too.
"Juvenile bipolar disorder and FOH are major social as well as
medical issues," says Dr. Papolos. A study that examined the
clinical profiles of over 5000 youth diagnosed with bipolar
disorder suggests that fully one-third have FOH. It's estimated
that hundreds of thousands of children may suffer from FOH, and
that it may be rampant in juvenile justice cases. "These children
are usually misdiagnosed, and the typical drug treatments used can
make them more aggressive," explains Dr. Papolos.
Breakthrough Biomarker
JBRF has been working to change the way juvenile bipolar
disorder is diagnosed and treated since 1999. Through the use of
big-data analytics, over the course of eight years researchers
identified a sub-set within the population of patients diagnosed
with juvenile bipolar disorder. This sub-set is defined by symptoms
that include extreme anxiety and fear of harm to self or others, or
what is termed "Fear of Harm" (FOH) syndrome.
What is unique about FOH is that it includes, for the first
time, a physical symptom, or biomarker, for a mental illness. Among
other symptoms, these children feel hot much of the time, a sign
that their bodies are not able to self-regulate their internal
temperature. This thermoregulatory disturbance plays a significant
role in the development of symptoms of their illness.
"The thermoregulation problem impacts many functions in the
body, including sleep," explains Dr. Papolos. "Kids with FOH have
problems with the dissipation of heat, so they have challenges
getting to sleep and arising. The smooth transitions from REM to
non-REM sleep are also affected, and they often have frequent vivid
nightmares very early on in their development, even at pre-verbal
stages. They have a fluidity between waking and dream states and
may see frightening and morbid images – REM intrusions – as soon as
they close their eyes. Their brains may experience this imagery as
if it's real, so fear sensitivity develops very early and they may
develop symptoms akin to PTSD where even neutral experiences can
trigger a fight or flight response. This state of threat can lead
to other behavioral issues."
A Breath of Hope
Once Dr. Papolos and the JBRF sponsored researchers discovered
the FOH syndrome, they set about looking for treatments that could
be used to mitigate it. One drug, ketamine, was known to affect
both fear sensitivity and thermoregulation. Originally developed as
an anesthetic, ketamine is used by dentists for children, and has
recently shown promise in treating people who come into emergency
rooms with suicidal thoughts. Could ketamine help FOH kids?
The team determined that ketamine can indeed be used via
intranasal administration to mitigate FOH symptoms and manage
bipolar disorder. Ketamine is known to influence the regulation of
body temperature and to reduce the intensity of conditioned fear.
They embarked on research to evaluate if intranasal ketamine could
be effective and safe for long term use. Their findings offer hope
for thousands.
For FOH patients, the administration of intranasal ketamine
combined with therapeutic levels of lithium salts or another mood
stabilizer results in a substantial reduction in measures of mania,
fear of harm and aggression. A rapid, substantial therapeutic
response showed significant improvement in patients' mood, anxiety
and behavioral symptoms. And in what proved to be the clearest
marker of a response to intranasal ketamine treatment, the
patients' thermoregulation improved significantly.
JBRF sponsored researchers published their initial findings in
the Journal of Affective Disorders in 2012. They also published a
follow up study in the same journal in 2017, which documented
treatment results over a span of six years. The bottom line? For
patients who fit the FOH diagnosis, intranasal ketamine treatments
can change their lives.
The challenge now is to raise awareness of the FOH diagnosis in
the broader world, and to have the use of intranasal ketamine
adopted as a standard clinical practice for treatment of this
condition. JBRF is taking steps to make that happen, offering
information on their website for families and medical
professionals, and launching a series of informal presentations
aimed at increasing awareness of FOH and ketamine treatment.
Training for mental health professionals and inclusion of the FOH
diagnosis in the DSM are future goals.
"For children and adolescents with FOH, accurate diagnosis of
FOH and treatment with a mood stabilizer and intranasal ketamine
can be transformational," says Dr. Papolos. "I believe there are
many, many more children out there who can benefit."
For more on FOH and juvenile bipolar disorder, the JBRF website
has helpful information.
For in depth information on FOH:
https://www.jbrf.org/what-is-fear-of-harm/
For an online diagnostic questionnaire:
https://www.jbrf.org/the-child-bipolar-questionnaire-for-families-use/
For a list of research and useful tools: https://www.jbrf.org/
*This patient profile is drawn from real examples, but is a
fictional conflation to protect privacy.
SOURCE JBRF