Pediatric Acute Neuropsychiatric Syndrome - What to Know

PANS is the diagnosis you hope to never receive as a parent. This obscure syndrome can be very difficult to treat and heal, and even more difficult to diagnose. Unlike it’s mother diagnosis of PANDAS, which is caused by strep bacteria, PANS has no "known” medical causes. I have my theories though.

PANS is characterized by a sudden onset of OCD symptoms. This could mean checking the door lock repeatedly, or it can display more anxiety and panic symptoms, like in our case. It can mean intrusive thoughts that induce fear or terror. It could mean raging about seemingly nothing that the parent can understand. It is a sudden onset of full blown symptoms, as if the child changes over night.

There are three main criteria for diagnosing PANS:

  1. An abrupt and dramatic onset of obsessive-compulsive disorder or anorexia.

  2. The concurrent presence of at least two additional neuropsychiatric symptoms with severe and acute onset.

  3. Symptoms that are unexplainable by a known neurological or medical disorder.

The main symptom of PANS is the abrupt onset of obsessive-compulsive disorder that causes significant enough distress to disrupt the child’s normal home, school, and social activities. These children may experience overwhelming irrational fears, intrusive fearful thoughts, compulsive rituals, thoughts that feed panic and terror. These thoughts and behaviors seem to emerge out of nowhere, and with no explanation.

There is often an irrational fear around food, textures, fear of colors, fears of choking, fear of vomiting, or fear of contamination from eating certain foods.

These symptoms are often accompanied by two or more of the following: (taken from here)

  • New or dramatically worsening generalized anxiety, separation anxiety, irrational fears and worries or specific phobias. The child may be hypervigilant and act as if he or she were in danger.

  • Depression and/or the regular occurrence of emotional displays that are disproportionate to what is occurring, also called emotional lability (instability). These may include self-injurious behaviors and suicidal thoughts.

  • Aggression, irritability, or oppositional behaviors that occur without provocation and are different from the child's usual temperament

  • Regressive behaviors such as temper tantrums, loss of age appropriate language, and other behaviors that are inappropriate to child’s age and stage

  • A sudden drop in school performance: This may be manifested by decrease in attention span or poor concentration, specific loss of memorization and academic skills.

  • Sensory and motor abnormalities including increased sensitivity to light, noise, smells, tastes and textures. Conversely the child may exhibit sensory seeking behaviors such as needing to touch things and textures

  • Visual hallucinations

  • Motor abnormalities such as deterioration in handwriting, physical clumsiness, motor hyperactivity, tics, and choreiform movements

  • Somatic signs and symptoms including sleep problems, bedwetting, daytime urinary urgency and frequency

As you can imagine, these behavioral issues can put significant stress on the caregivers of a PANS child. It is highly volatile and unpredictable. It is not possible to reason with a PANS child, because their brains are inflamed, so there is no logic behind the fears, panic, intrusive thoughts, and OCD behaviors.

The causes that I have found that contribute to PANS can be any of the following, in combination, or isolation: toxic mold exposure, Lyme and coinfections, retroviruses, other DNA viruses, and often some type of trauma paired with any of the above.

So, now that we’ve covered what it is, and what it looks like, what do we do about it?

The healing process for PANS is not an easy one. It takes time, commitment, and patience. It takes dedicated self care for the caregivers, because it takes a lot out of us. Once there is an established, STRONG self care practice, and scheduled breaks for the caregiver added to calendar, the process for healing a PANS child is outlined below. I listed them in the order I found to be most important.

  1. DRAINAGE. We used homeopathic Lymph Tone I, II, and III by Energetix (several times over). We needed to use many many rounds over the course of two and a half years. This gets the lymphatic system moving, as it tends to store many DNA fragments of illness. The lymphatic system is a huge part of our immune systems, so movement and drainage is absolutely necessary. This type of drainage remedy helps the body to eliminate and excrete the build up of toxic waste so it no longer takes up healing energy. I gave my kiddos 1 drop per 10lbs of body weight right into their mouths, twice daily, sometimes more often as it also can prevent detox responses.

  2. WATER. Water intake is crucial for PANS kids (and adults). It moves the toxins out of the body, and it prevents stagnation. It is also very important for those PANS kids who are sensory stimulated and have an aversion to water. Sometimes I’ll add lemon and honey, or do coconut water, just to be certain the intake is adequate.

  3. MOVEMENT. Moving the physical body, walking, rebounding, dry brushing, playing at a playground, yoga, bike riding, etc. Getting the body moving is essential to healing, as it stimulates the lymphatic system. This also can help prevent detox responses.

  4. BREATHING. When our brains are inflamed, as in cases of PANS, deep breathing is crucial for numerous reasons. One reason is that it calms the sympathetic nervous system, to get us out of fight/flight and moves us into a parasympathetic response, as in rest/digest. Slow, deep rhythmic breathing, at least 10 minutes a day for adults. For our PANS kids, as many minutes as you can, even if it’s random deep breaths through out the day.

  5. DIET. Important and tricky is the diet component. It will vary from kid to kid. Some PANS kids can not tolerate high histamine, some can not tolerate animal products, especially dairy, some can not tolerate raw vegetables. It is important to create a food diary for your child and pay deliberate attention for about 5-7 days to determine which foods are most beneficial, and which foods should be eliminated. Keep track of bowel habits, urination habits, moods, energy levels, and sleep habits during this week. The insights you gain will be tremendous information for the healing process.

  6. STRESS. This is a crucial piece to the healing puzzle. If the care taking is under stress, the PANS child will feel it, internalize it, and possibly manifest symptoms around it. It is important for everyone to receive adequate support in managing stress levels, emotions, and taking breaks as needed. Taking a break for a day or a week will not set you or your child back, and sometimes this is the recalibration that everyone needs in order to launch forward even farther into healing. This process is not linear and is very often cyclical. We move around in many directions until there is a general obvious progression.

  7. BINDERS. I recommend having these in order prior to doing any killer herbs. We used a variety of binders, including charcoal, bentonite clay,

  8. HERBS. This is the last, and a very important step. I will list, without going into detail, some of the ones that we used that I found to be very effective. I did not start using these herbs until detox pathways (BULLS*) were open. I would use one for a month, then stop and start another one. I always take breaks when using herbs. And every few weeks, I would take a week or so off from everything completely to give the body a break, let it go to baseline, and evaluate where we were at, and then go from there. I worked with two amazing practitioners who guided me along, and supported me in making the best choices for my kids. I highly recommend hiring a practitioner to work with you, and guide you along this process. We used, at different times, astragalus, cat’s claw, ashwaghanda, neem (for short durations, 10 days or less), turmeric, burbur, red root, elderberry, cleavers, clove, diatomaceous earth, ginger, noni tincture, argentyn silver, medicinal mushrooms and CSA tincture by Woodland Essence. These herbs are ALL tinctures. We also used a variety of homeopathic remedies for healing bacteria and viral infections.

You can contact me below using the contact form if you are ready to take the next step in healing from mold toxicity or PANS. I will be sharing our specific story in another blog post, and what we did specifically to heal PANS in our home, for kiddos, caregivers, and everyone involved. This is a long process and journey, and often can feel traumatic for the caregivers. Be gentle with yourself in the process and create a network of supportive people around you so that when you encounter challenges, you are encouraged in the way you need.

*BULLS - bowels (2-3 bowel movements daily), urinary, lung (deep breathing exercises), lymph (dry brushing, rebounding), Skin (sweat).

Mandy FlandersComment