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symptoms that includes ritualistic or perseverative behaviors that must be
repeated in order to control fears or anxieties.421 OCD behaviors can
include obsessions with any or several of the following:
• Washing: usually because of a fear of contamination from germs
or a fear of becoming dirty or sick.
• Hoarding: finding it hard to discard anything or determine items
unnecessary.
• Doubting: involving a strong fear of being wrong, rejected, or
blamed to the point of an inability to do something for fear of being
ridiculed or found incorrect.
• Checking: checking rooms, appliances, and anything repeatedly
because of a fear of being harmed by perceived dangers such as
fire, accidents, robbery, or animals.
• Counting: tending to perseverate on numbers and the
overwhelming need to count or repetitively do something in a
certain order or a certain number of times.
• Arranging: fixating on order, patterns, symmetry, or balance.
Demystifying PANS/PANDAS
As previously discussed, many children with OCD may have intrusive
thoughts and mental compulsions. These children try very hard to hide
these intrusive thoughts. As practitioners, we may not identify physical
compulsions or even see these mental compulsions. It is important to
listen intently to the child, caregivers, and even your office staff to
identify Obsessive-Compulsive Disorders correctly.
OCD can be a challenging behavior for families to navigate because
it is not well understood, is not logical, and requires the family to adjust
much of their routines and expectations to accommodate. In addition, it
may bring up feelings of anxiety, frustration, sadness, or guilt in
caregivers and other family members, creating even more barriers to
connecting with appropriate help.
Deeper than the Diagnosis
It is simply not enough to diagnose a child with OCD and use
pharmaceuticals and therapy to treat it. Although therapy and medication
are important aspects of a successful plan, functional medicine requires
us to look into the actual cause of the child’s OCD. We find that in
addition to the abrupt onset of OCD with PANS/PANDAS, the condition
can be caused by other infectious or autoimmune triggers, oxidative
stress, genetic polymorphisms, glutamatergic abnormalities, or other
abnormalities of neurotransmission. Though the list seems extensive,
each of these should be carefully considered in examining OCD.
However, remember that an abrupt onset of OCD or other symptoms is
such a distinctive sign of PANS/PANDAS and Basal Ganglia
Encephalitis that it is almost always the culprit. In fact, more than 80% of
cases of abrupt onset OCD have evidence of postinfectious
neuroinflammation in the caudate/putamen and basal ganglia.422 Still,
practitioners must also rule out other forms of encephalitis or cerebral
vasculitis, tumors, strokes, physical or sexual abuse, psychological or
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physical trauma, as well as exposure to toxins, medications, or illicit
drugs, before concluding that PANS/PANDAS is the solitary trigger.423
Treatment
Treatment of OCD should always include therapy, especially
Cognitive Behavioral Therapy (CBT), Dialectical Behavioral Therapy
(DBT), or sometimes Exposure and Response Prevention (ERP). Further
discussion can be found in our Neurotherapy Chapter and our mentorship
program.
Pharmaceuticals
As mentioned previously, pharmaceutical management of OCD can
be very helpful and often includes antidepressants, anti-anxiety
medications, or other classes of medications, such as SSRIs or SNRIs,
including
Citalopram,
Escitalopram,
Fluvoxamine,
Fluoxetine,
Paroxetine, Sertraline, and Clomipramine as well as Duloxetine and
Venlafaxine.424 I have found that if any of these medications are
considered, often very low doses titrated up slowly work best. All side
effects should be discussed and monitored, including:
• Nausea or stomach upset
• Inability to sit still
• Sleepiness or insomnia
• A heightened sense of energy
• Drowsiness
• Dry mouth
• Racing heart (requiring EKG monitoring)
• Concentration problems
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• Problems with urination
• Weight gain
Although these treatments are standard in OCD care, I have found
many natural interventions to be both safe and helpful for children with
neurobehavioral issues and OCD. I will often utilize these first.
Natural Treatments
Herbal Medicine
As discussed in the chapter on Anxiety, herbal interventions to
consider for OCD include adrenal adaptogens such as Withania somnifera
(Ashwagandha), often referred to as the “herbal Valium,” and Rhodiola
rosea. As calmative, non-stimulating herbs, these particular adaptogens
can help with perseverative behaviors, anxiety, and OCD while
promoting neurocognitive balance. Ashwagandha, in particular, has been
shown in mice models to decrease OCD behaviors comparably to
Fluoxetine.425 This herb helps the body to more effectively deal with
stress, promoting better mood and energy regulation. It can be helpful for
children with yeast overgrowth and those with thyroid issues, as it exerts
mild antifungal426 properties and increases thyroid hormone levels by
decreasing cortisol.427
The nervine herb Passiflora incarnata (passionflower) has been
shown to reduce perceived stress, impacting many symptoms which
develop from increased stress load, including anxiety, OCD, depression,
and insomnia.428 Clinically, we see this improving OCD as well. A 2001
study reported that passionflower managed anxiety and OCD as well as
the benzodiazepine drug Oxazepam without the problematic side
effects.429
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CBD and hemp oil can also be an excellent intervention for children
with OCD symptoms in PANS/PANDAS. Cannabidiols decrease
inflammation and pain signaling, improving anxiety, OCD, and
depression. In fact, in a 2021 study, patients reported a 60% reduction in
compulsions, a 49% reduction in intrusions, and a 52% reduction in
anxiety from before to after inhaling cannabis.430 They have also been
shown to reverse anti-compulsive effects and OCD behaviors such as
marble burying in mice.431 Because of its dual effect of decreasing
inflammation and pain as well as decreasing anxiety and OCD, it is often
a good early treatment choice.
Nutraceuticals
One of my first choices in the natural treatment of OCD is n-acetyl
cysteine (NAC). NAC is a nutritional supplement that enhances
glutathione S-transferase activity and stimulates glutathione biosynthesis.
It is a potent antioxidant, promoting detoxification and mitochondrial
membrane support. Multiple studies have shown the relationship between
OCD, oxidative stress, and altered glutathione metabolism. Like
sulforaphane, as a glutathione precursor, NAC has been shown to have
multiple purposes, including decreasing OCD,432 tics, and anxiety.
Published studies report its treatment of trichotillomania,433 compulsive
gambling,434 nail-biting,435 obsessive excoriation, and skin picking.436 One
caveat for NAC: the amino acid is easily oxidized when exposed to air
and is often more bioavailable when buffered and individually packaged.
Because technology is rapidly changing, do your due diligence in finding
updated formulations for best absorption or instruct patients to
individually blister pack each daily dose of n-acetyl cysteine.
Although commonly known as “vitamin B8,” inositol is not a vitamin
but rather a beneficial sugar that influences insulin response and exerts
effects on mood and cognition. This intervention has been shown to
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decrease OCD through its effect on serotonin,437 although high doses (up
to 18 grams) may be required to see an appreciable effect.
5-HTP, lithium orotate, and GABA can also decrease
obsessive-compulsive behaviors and calm, repetitive thoughts. 5-HTP, an
amino acid and precursor of serotonin, raises levels of this
neurotransmitter effectively, which decreases somatic symptoms like
insomnia and also calms OCD symptoms. Because of its mechanism of
action, 5-HTP should not be taken with SSRIs, as it may cause an excess
of serotonin.438 Lithium orotate may cross the blood-brain barrier more
easily than lithium salts typically prescribed, so low doses may be quite
effective without unwanted side effects like dulled personality, memory
loss, or weight gain that are seen with prescriptive Lithium.439,440 Finally,
Gamma-Aminobutyric Acid (GABA) levels in patients with OCD are
significantly lower than in those not living with the condition.441 Research
is now focusing on how GABA supplementation can improve OCD
symptoms by restoring normal GABA levels. We find clinically that each
of these may help to calm the brain, decreasing excitability, anxiety, and
OCD.
Minerals
Vitamin and mineral insufficiency can greatly impact children and
adults with OCD. I pay special attention to low levels of selenium, zinc,
iron, and magnesium, as well as higher levels of calcium. Optimal levels
of magnesium and zinc, in particular, are associated with optimal brain
function (and therefore decreased OCD). We know that magnesium
deficiency can cause hyperactivity, anxiety, twitching, and tics, not to
mention its effects on insomnia and constipation.442 Zinc deficiency can
lead to problems with energy metabolism and immunity, as well as acne,
mouth sores, spotted lines on nails, and loss of smell and taste.443
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Lifestyle Factors
In all children with OCD and anxiety, lifestyle factors should be
addressed, focusing on sleep (addressed in another chapter), exercise, and
mindfulness training. Mindfulness involves paying attention to the
present internally and externally without being hooked or entangled by
thoughts. Mindfulness can include simple mantras (even repeating a
favorite song!), breathing awareness, movement (yoga or stretching),
grounding (body awareness), and visual, sound, and taste awareness
exercises. Refer to the Anxiety, Tics, and Neurotherapy chapters for more
information.
Nutrition and GI Health
The health of the gastrointestinal tract is at the core of nearly every
neurobehavioral issue I see. The association between constipation and
encopresis with repetitive, ritualistic, and compulsive behaviors such as
OCD, anxiety, and sensory over-responsivity is incredibly compelling.444
I firmly believe that treating dysbiosis or germ overgrowth of any sort is
paramount to successful outcomes. This is done through the use of
antimicrobials (see Step 1: Eradicate the Pathogen) in addition to an
anti-inflammatory diet specifically tailored to each child’s dietary needs
and restrictions.445
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Processing issues and problems with mental acuity are common in
children with PANS/PANDAS and Basal Ganglia Encephalitis. Many
children, families, and teachers refer to this confusion as “brain fog.”
Often, auditory and visual processing delays, difficulties with attention
and focus, and executive function deficits are present.
Brain fog is really a “grab bag” term for any inability to attend,
concentrate, or learn and is a hallmark of PANS/PANDAS and Basal
Ganglia Encephalitis. It can be associated with or caused by lack of sleep,
intrusive or off-topic thoughts, anxiety, or mood swings–even an acute
onset of OCD. Although there is no data on the percentage of children
with brain fog, as it encompasses so many different aspects of thinking
and focusing, we do know that in several studies,446 up to 90% of children
have difficulty concentrating, 80-85% have sleep disturbances that can
lead to difficulties attending in school, 70% have abrupt onset of
hyperactivity as in ADHD, 70% have inattentiveness as in ADD, and 60%
will have various learning difficulties or memory loss. It is clear that
“brain fog” can take on many forms. A trained neuropsychologist can
help differentiate in an individual child what specific executive function
defects, memory issues, attention problems, or other processing
difficulties a child may be experiencing. This evaluation can help guide
the specific educational accommodations a child may require.
Demystifying PANS/PANDAS
It is important to remember that PANS and PANDAS have an
episodic course, so fluidity within the school setting is vital. A child that
can be on time to class, attend an entire lecture, and access information
one day may be unable to master one or more of the skills the next. Thus,
understanding the relapsing and remitting course of this disease is
essential for parents and practitioners, educators, and all school
personnel.
In addition to the above issues, children who feel “out of it” or who
describe themselves as having “brain fog” may also be experiencing one
or many of the following abrupt onset symptoms:
• Dysgraphia, clumsiness, or trouble with handwriting.
• Margin drift and left-sided neglect in right-handed children when
writing or drawing.
• Sensory modulation issues such as insensitivity or
hypersensitivity.
• Tics (which in and of themselves can be very fatiguing to the body
and mind).
• Dysautonomia, adrenal stress, or insufficiency (all of which can
manifest as a hyper-alert appearance aka “deer in headlights”).
• Disordered eating (lack of calories, good fats, and proteins can
impact learning).447
All of these symptoms together or individually are often put under the
umbrella of “brain fog” or simply diagnosed as ADD or ADHD. In my
opinion, getting to the underlying cause of these behaviors and brain fog
is vital, rather than just applying “name it, blame it, tame it” medicine.
This is especially true for these cognitive issues, as medications
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conventionally used to manage ADD and ADHD may exacerbate the tics
and anxiety seen with PANS/PANDAS.
Treatment
Overall, “brain fog” is treated as any other symptom in
PANS/PANDAS with the three-pronged approach. We continue to treat
any underlying infection, address inflammation, and provide immune
support while reducing the actual symptom(s). For the last of these, it is
important first to recognize what is behind the brain fog, such as sleep
issues or anxiety, and treat that root cause.
Pharmaceutical Management
We sometimes consider prescription treatment for brain fog with
Atomoxetine, a norepinephrine (noradrenaline) reuptake inhibitor
approved for ADHD treatment.448 In addition to its good track record of
helping with concentration, the drug has anti-inflammatory properties as
well, so it may be more beneficial than stimulant medications in treating
children with PANS/PANDAS. Be aware that we first recommend an
EKG to rule out a prolonged QT interval. Atomoxetine and a few other
medications for attention and focus can further prolong this interval and
may be contraindicated. Other non-stimulant medications, such as
Viloxazine, have also been developed and may be worth consideration.
Other drugs to consider may include Guanfacine or long-acting
Guanfacine (under the brand name of Intuniv), an alpha-blocker approved
for treating ADD/ADHD. It may also be helpful in the treatment of
anxiety, tics, and OCD.449
As with all medications, start low and titrate up weekly as tolerated.
Initially, a child may experience sleepiness, so start on a weekend, and if
there is no change within 2-3 days, consider dosing at night, as this can
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still be helpful. If a child develops a headache, stop immediately and
consider an alternative.
Occasionally in children with PANS/PANDAS, we will trial
stimulant medications if other pharmaceutical and natural interventions
