PANS: What Every Parent, Teacher and Caregiver Needs to Know
October brings to mind scary fun for families—costumes, trick or treat, haunted houses— but for families dealing with PANS (pediatric acute-onset neuropsychiatric syndrome), October can usher in a truly fearful time of physical and psychological horror.
October 9th is PANDAS/PANS Awareness Day.
(PANDAS, pediatric autoimmune neuropsychiatric syndrome associated with streptococcal infections, is a subset of PANS associated with strep infection.)
New incidence or flares of PANDAS/PANS spike at this time of year. Sadly, more and more families are becoming all too aware of this disorder involving a misdirected immune system response that triggers neuroinflammation and behavioral changes. PANS can bring on a sudden onset or exacerbation of obsessions and compulsions, anxiety, aggression, eating restriction, tics or body jerking, bed wetting and accidents, loss of math and handwriting skills, difficulty sleeping, and other symptoms.
An estimated 1 in 200 children suffer with PANS (see Aspire site for more information).
Flares or initial onset can be triggered by exposure to almost any pathogen (whether the child exhibits symptoms of illness or not) and/or an inflammatory reaction. In fact, it is quite common to hear from my clients, “But he is the one who is never sick! Even when everyone else in the family gets a cold or flu, he never does…”
The subset of kids vulnerable to PANS often have immune systems that do not muster fevers (a sign of a healthy immune response) or manifest symptoms with illness. Paradoxically, for those kids getting a fever and exhibiting typical symptoms of illness is a part of the healing process.
Since 2016 the FluMist (a flu vaccine using live-attenuated virus sprayed into the nasal passages) had been pulled from the market because, according to a CDC panel, it performed poorly compared to injectable flu vaccine. However, this year, it has been reintroduced with a new version containing live H1N1 flu virus.
Personally, I am all too familiar with the potential impact of that H1N1 FluMist. Nine years ago, when my son was in sixth grade, there was an H1N1 flu outbreak. New York City public schools were giving the vaccine en masse to all children in public schools. My son, who had experienced a severe reaction to an earlier vaccine, was opted out. However, the rest of the class went to the nurse’s office.
My son’s sixth grade teacher called me:
“Remember that thing you told me your son used to have? When he got tics?”
“PANDAS?” I asked, recalling that I had told her about two episodes he had had when he was 4 and 5 that each lasted 10 days and involved a sudden onset of severe OCD and tics.
“That’s it!” she responded. “Well, 20 minutes after the other kids got back from getting their flu vaccines in the nurse’s office, your son started having uncontrollable eye blinking that has gotten so bad he cannot see the board, and now he can hardly hold his head up.”
The school was only four blocks away. I rushed there, but by the time I arrived, my son was in a state of complete paranoia, believing that the teachers had turned to monsters. He was hiding behind the stairwell door, terrified. Fortunately, I was able to give him a homeopathic remedy that very rapidly enabled him to distinguish his “crazy thoughts” from reality, but it would take another couple of days for the “crazy thoughts” to completely fade away.
Subsequently, in working with children with PANS, I heard story after story of how the child’s affliction with this syndrome began at the time of the H1N1 flu, or later, after receiving a flu vaccine themselves.
(Studies have demonstrated that the H1N1 vaccine was responsible for causing autoimmunity that prompted narcolepsy in more than 1300 people.)
For the two years without FluMist, the October spike in new cases or flare-ups seemed to have subsided a bit among my own clientele, although I saw many incidences of sudden onset among those who got the injected flu vaccine or the flu.
As a Holistic Health Practitioner who specializes in PANS and ASD, I braced myself for the calls and the posts this year. Children who had never had tics, were suddenly beset with tics and body jerking, bedwetting, extreme OCD, anxiety, or inability to eat in the last few weeks. While some may consider this coincidence, because of my son’s dramatic experience and the subsequent tales of so many clients with almost identical stories from that year, I know the truth.
It’s actually written right on the prescriber instructions from this year’s manufacturer, MedImmune,
Inform vaccine recipients or their parents/guardians that FluMist Quadrivalent is an attenuated live virus vaccine and has the potential for transmission to immunocompromised household contacts.
Those who suffer from PANS have impaired immune systems. Nevertheless, I have yet to meet a client who was administered the FluMist who was informed the vaccine could pose a danger to the immunocompromised, and in many cases, it was the immunocompromised child who received the vaccine—resulting in a debilitating neuroinflammatory reaction.
While I could give my son remedies to ease his tics, OCD, etc., the vulnerability to being triggered in October persisted for two years after that H1N1 vaccine exposure, with sudden onset, extreme tics and jerking—which at one point was so bad he could not lift his fork to his mouth, and emotional lability, including raging.
I considered keeping him out of school and church during October to avoid exposure to people getting the flu vaccine but instead learned how to prevent the reaction and heal his immune system with homeopathy and nutrition. The stories of others who ended up with their children in hospitals or losing long periods of their childhood to this devastating illness are not so hopeful. Thankfully, I have been able to put my knowledge and experience to use to help so many other children.
Those on the autism spectrum are particularly vulnerable to this PANS reaction (some doctors who work with ASD specialty practices estimate rates in their patient populations are as high as 40%), and often their symptoms will be written off as part of their autism. Of those not on the spectrum, it is interesting to note that many of those affected are brilliant—the kids with straight As, top of their class. For those children, the dramatic changes can many times land them in the psych ward on heavy-duty medication.
Sadly, PANS is not well recognized in the medical community, and there is no blood test that is definitive. It is a clinical diagnosis. Even when recognized, the conventional treatment is often long-term antibiotics, antivirals and immune suppressants, with all the side effects that further compromise the immune response and every new exposure bringing a new flare. These kids can be even more prone to a PANS flare from exposure to flu. Recent studies show that those on antibiotics before the time of the flu shot are at great risk of inflammatory reaction.
The homeopathic approach is different. Remedies are highly individualized to promote a healthy immune response to overcome infections or other triggers, tame inflammatory reaction and lessen the vulnerability to future flares. Optimal nutrition to eliminate triggers and lessen vulnerability is explored. For those who have been on long-term antibiotics or steroids, remedies to prompt balance of the microbiome are determined.
This October my mission is to raise awareness of the power of homeopathy and nutrition to prevent and overcome the vulnerability to PANS.
Spread the word! There is hope for healing with homeopathy.
Vaccines and Autoimmunity, by Yehuda Shoenfeld, Nancy Agmon-Levin, Lucija Tomljenovic