Cannabinoid Oil And My Son’s Tic Disorder
Cannabinoid (CBD) oil has been a godsend since I found out my son was diagnosed with a tic disorder.
In late October of 2016, my 7-year-old son, Lincoln, was diagnosed with Transient Tic Disorder. It’s fairly easy to say that this moment shook me like I’ve never been shook before. I have never been so scared in my life! I’m sure all fathers out there have experienced the hopelessness of having a sick child. It’s excruciating and overwhelming.
Around late August, I’d noticed Lincoln had started this heavy, exaggerated blinking. I didn’t think anything of it, initially, as I used to do the same thing as a kid…and still do occasionally. Back in the day, my parents thought it was some strange habit I’d picked up. Within a few weeks, Lincoln’s blinks had increased in rate and exertion. He’d also started rolling his eyes in really pronounced ways…sometimes so hard that he’d turn his head to the side.
Then, almost suddenly, he was experiencing these episodes that were like seizures. His eyes were rolling back in his head, his tongue would go limp or roll in his mouth. His face would grimace. His hands, feet and limbs would twitch erratically. And he would make these noises…groans, growls and moans. Sometimes he’d whistle or repeat words during these spells.
The episodes would last between 5 and 45 minutes. It was painful to watch. Especially, when he’d come out of the episodes with no recollection of what he’d just experienced. He could not hear us calling his name or feel us holding him while he endured these episodes. He’d snap out of them confused, exhausted and in physical pain.
From September to November, we’d made countless trips to the ER and doctor’s appointments, including spending Thanksgiving in the hospital Epilepsy Monitoring Unit. We were relieved that seizures had been ruled out. But, the thought that the tics were causing this much chaos was unnerving. We also had to remove Lincoln from the school bus and set up a treatment plan with his school, as he was sensitive to loud noise, bright lights and rapid movement. We were also advised that if the motor and vocal tics continued for a year, Lincoln would be diagnosed with Tourette’s Syndrome.
During this entire process, we drastically altered the family diet, eliminating dairy, white sugar and taking meat out of the house, except for one meal on the weekends as sort of a cheat day. We also started a daily essential oil regimen, using doTERRA oils. The Frankincense oil was a major support . Overall, we saw some healthy results and improvement from these changes, especially regarding his ability to sleep soundly.
By this time, I’d already done extensive research on CBD oils and the benefits of medicinal Cannabis. I was strong in my belief that adding the CBD oil would be the completion of our treatment regimen. So, after some convincing of his mom, I ordered the best CBD oil I found during my research. I’m so elated to learn that I was correct.
Lincoln takes one veggie-cap (15 drops) of CBD oil a day. The facial tics, eye rolls and motor tics have essentially dissipated. He has not had an elongated episode in almost two months. His teachers have stated that they have really noticed a difference as well. I couldn’t be happier! An added bonus of not having my son on some medication to treat his symptoms and add toxins to his system, is that the CBD oil was half as much in cost and four times the usage.
I’m a pretty private person, so not many people know the pain and torment that my family has endured throughout this process. I also fought with myself to even share this story. But, I simply could not deny the sheer joy of the results that my son has seen with the use of CBD oil.
I say all that to say this. I’ve never been a huge proponent of legalizing marijuana, as I don’t smoke it. I’ve really just had a “live and let live” kind of approach to it. Now, that I’ve had the benefits of cannabis/hemp directly affect my family, I truly feel that there is a need to treat with what we have been naturally given.
The Autism Community in Action (TACA)
Pediatric Autoimmune Neuropsychiatric Disorders associated with Streptococcal Infections, or PANDAS, is a common autoimmune disorder with far-reaching movement, behavioral, and cognitive consequences. Although we focus on the pediatric population by definition with PANS and PANDAS, immune-mediated OCD/Tics/Neuropsychiatric Disorders can also affect adolescent and adult populations and should always be considered when specific signs and symptoms emerge. Both PANS and PANDAS are clinical diagnoses differentiated by the abrupt onset of symptoms as listed below.
As noted by Dr. Sue Swedo at the NIH in the late 1990’s, PANDAS involves antibodies from a streptococcal infection reacting with brain tissue (specifically the basal ganglia), triggering movement and behavioral problems. Rheumatic Fever is an older known disorder that illustrates this same disease process, in which antibodies from a streptococcal infection attack the heart valves, joints, and brain and result in heart disease, arthritis, and Sydenham’s Chorea. Although bacteria set the vicious cycle in motion, the real damage in this type of autoimmune disorder stems from the antibodies and the inappropriate immune response.
In 2012, the triggers for an abrupt onset of neuropsychiatric symptoms were expanded to include other infections such as Mycoplasma and viruses as well as metabolic disorders including exposure to pesticides or anesthesia. As such, in addition to PANDAS, we now utilize the acronym PANS, Pediatric Acute-Onset Neuropsychiatric Syndrome.
Diagnostic Criteria for PANDAS and PANS
- Abrupt, dramatic onset or recurrence of OCD
- Acute-onset anorexia and/or severe, restrictive eating disorder
- Concurrent presence of two of the following neuropsychiatric symptoms with severe and acute onset:
- Separation Anxiety
- Emotional lability
- Behavioral/developmental regression
- Sensory/motor abnormalities – handwriting deterioration
- Deterioration of school performance
- Urinary symptoms (urgency, frequency, enuresis)
- Sleep disturbance (difficulty falling asleep, REM disinhibition/restless sleep)
Additional Signs and Symptoms of PANDAS and PANS
There can be many signs, symptoms, and comorbid diagnoses noted in children with PANS/PANDAS including irritability, personality changes, aggression, uncontrolled agitation, fear about bedtime regimen, fidgetiness, emotional lability, motoric symptoms (tics, motoric hyperactivity, compulsive rituals), sensory defensiveness, impulsivity, depression, dysthymia, ADD, and ADHD in addition to those presented in the graphic below.
Testing for PANDAS and PANS
Always keep in mind that PANS and PANDAS are clinical diagnoses. Laboratory tools are limited and the traditional abnormalities of increased blood strep titers (ASO and DNAseB antibodies) and a positive throat culture are not always present. Therefore, normal levels of strep antibodies and negative cultures do not exclude the PANDAS diagnosis. Similarly, normal mycoplasma, viral or other titers do not rule out the diagnosis of PANS.
In atypical presentations, CaM kinase and anti-neuronal antibody testing can help to differentiate children with evidence of autoimmune encephalitis from those with tics, OCD, ADHD from other causes. The most commonly abnormal parameters (in > 56%) are immune markers such as ANA. Measuring other items such as zinc, magnesium, vitamin D and A and mitochondrial and thyroid markers may also be helpful in supporting appropriate treatments.
Treatment Options for PANDAS and PANS
The treatment of children with PANS and PANDAS is three-fold including antibiotics/antimicrobials, comprehensive immune therapy, and treatment of symptoms.
1. Antibiotics and Antimicrobials
- Used daily for treatment; important to also consider prophylaxis to prevent further reinfection.
- Penicillin, Amoxicillin-Clavulanate, Azithromycin, Clarithromycin, Cephalexin, Cefadroxil, Cefdinir, Clindamycin, etc.
- Natural Antimicrobial Therapies
- Probiotics and Prebiotics including Saccharomyces Boulardii
- Xylitol and BlisK12 to treat germs in the mouth and nose
- Many herbs can help treat multiple germs:
- Antimicrobial herbs for strep including:
- Taiga (Pine needle extract)
- Berberine (Goldenseal)
- Oregano Oil
- Colloidal Silver (also effective for strep)
- Olive Leaf
- Glycyrrhiza (Licorice)
- Lemon Balm
2. Immune Modulation Therapy
- Short-term use of tapering dose
- Positive response often indicates the patient is more likely to respond positively to IVIG, but no response does not mean IVIG will be ineffective
- Intravenous immunoglobulin (IVIG)
- Derived from human blood; pooled from many donors
- Can provide antibodies in those who are lacking them
- Can help to inactivate antigens and slow down an overactive immune system that is functioning inappropriately
- A type of plasma transfusion to remove antibodies
- Monoclonal antibody (off-label for lupus, MS, CIDP)
- Helminth Therapy
- HDCs, safe, and effective Primobiotics
Additional Considerations: Diet, Anti-Inflammatories, and Immune Modulators
First, diet is most important as food is medicine. A child’s diet needs to include whole foods, that are as organic and non-processed as possible. It should include foods high in antioxidants such as berries, artichokes, kale, spinach, beets, dandelion greens, red cabbage and dark chocolate. Use herbs and spices, particularly garlic, ginger, oregano, turmeric and cinnamon, adding little sprinkles to anything. Healthy oils include extra virgin olive, avocado and coconut oil. Meats should be grass-fed organic and wild-caught fish. Drink lots of water. Remove additives, sugars, gluten, casein, soy, and any food sensitivities as much as possible. Basically, this is an anti-inflammatory, healthy diet that all of us should be attempting to attain.
Additionally, a healthy treatment protocol includes anti-inflammatories and antioxidants as listed below:
- Ibuprofen (10 mg/kg every 6-8 hours in the short term as needed for flares)
- Essential Fatty Acids–Omega 3 (EPA/DHA) and 6 (GLA)
- Flavonoids – Quercetin, Luteolin, Rutin
- CBD or Hemp Oil
- Vitamin D, A, and C
- N-acetyl Cysteine and Glutathione
3. Interventions to Consider for Treatment of Symptoms (Anxiety/ OCD/Tics)
Below, you will find interventions for treating symptoms associated with PANDAS and PANS, such as anxiety, OCD, and tics.
- Dietary Supplements:
- L-MTHF (if MTHFR mutation OR CFD)
- Lemon Balm
- Mimosa Bark
- Hemp oil
- N acetyl Cysteine/Glutathione
Other Interventions to Consider for the Treatment of Symptoms
- CBT (Cognitive Behavioral Therapy) or DBT (Didactic Behavioral Therapy) can be particularly effective for children and families with PANS/PANDAS
- Removal of adenoids and tonsils
- Important intervention for those with recurrent strep or sleep apnea
- Also consider in certain cases where appropriate after discussing with your practitioner or referral to ENT familiar with PANDAS
- Treatment of yeast, parasites, clostridia as well as mold, lyme and co-infections as indicated by history and physical exam and as warranted
- Medications like SSRI’s (Prozac, Zoloft, etc) can often act as a “patch” for OCD or other symptoms
- However, they should only be considered for short-term use in certain cases and starting with very low doses, increasing slowly if needed
PANS/PANDAS is a devastating autoimmune disorder in children that highlights another link between chronic and recurrent infection and immune dysregulation and neuropsychiatric and behavioral problems. Most importantly, this is a clinical diagnosis of an abrupt onset of symptoms.
Ongoing clinical experience and emerging research reveals the depth and scope of problems stemming from PANS/PANDAS. While OCD and tics are still common, other issues like anxiety, bedtime fears or sleep issues, enuresis or other urinary symptoms, aggression, and deficits in learning, attention, and social interaction are among the many manifestations that result from PANS/PANDAS and impair the daily functioning and cognitive progress for many children.
Heightened clinical suspicion and more appropriate and comprehensive treatment with antibiotics/antimicrobials and immune-modulating therapy will transform PANDAS from a devastating chronic illness with episodic flares into a treatable disorder.
About Nancy O’Hara, MD, MPH, FAAP
Dr. Nancy O’Hara is a board certified Pediatrician. Prior to her medical career, Dr. O’Hara taught children with autism. She graduated with highest honors from Bryn Mawr College and as a member of the Alpha Omega Alpha Honor Society from the University of Pennsylvania School of Medicine. She earned a Master’s degree in Public Health from the University of Pittsburgh. After residency, chief residency and general pediatric fellowship at the University of Pittsburgh, Dr. O’ Hara entered general private practice in 1993, and in 1998 began her consultative, integrative practice solely for children with special needs. Since 1999 she has dedicated her functional medicine practice to the integrative and holistic care of children with chronic illness and neurodevelopmental disorders such as ADHD, PANDAS/PANS, OCD, Lyme and ASD. She is also a leader in the training of clinicians, both in the United States and abroad.
For further information, see the references below and the following websites:
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Swedo SE, Seidlitz J, Kovacevic M, et al. Clinical presentation of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections in research and community settings. J. Child Adolesc. Psychopharmacol 25(1), 26-30 (2015).
Swedo SE, Leckman J, Rose N. From research subgroup to clinical syndrome: Modifying the PANDAS criteria to describe PANS (pediatric acute-onset neuropsychiatric syndrome). 2012;2:1-8. Pediatr. Therapeutics 2, 1-8 (2012).
Pavone P, Parano E, Rizzo R, et al. Autoimmune neuropsychiatric disorders associated with streptococcal infection: Sydenham chorea, PANDAS, and PANDAS variants. J. Child Neurol 21(9), 727-736 (2006).
Macerollo A, Martino D. Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS): An Evolving Concept. Tremor. Other Hyperkinet. Mov (N Y) 3 (2013).
Frankovich J, Thienemann M, Rana S, et al. Five youth with pediatric acute-onset neuropsychiatric syndrome of differing etiologies. J. Child Adolesc. Psychopharmacol 25(1), 31-37 (2015)
Chang K, Frankovich J, Cooperstock M, et al. Clinical evaluation of youth with pediatric acute-onset neuropsychiatric syndrome (PANS): recommendations from the 201
3 PANS Consensus Conference. J. Child Adolesc. Psychopharmacol 25(1), 3-13 (2015).
Giedd JN, Rapoport JL, Garvey MA, et al. MRI assessment of children with obsessive-compulsive disorder or tics associated with streptococcal infection. Am. J. Psychiatry 157(2), 281-283 (2000).
Frankovich J, Swedo S, Murphy T, et al. Clinical Management of Pediatric AcuteOnset Neuropsychiatric Syndrome: Part II-Use of Immunomodulatory Therapies. J. Child. Adolesc. Psychopharmacol 27(7), 574-593 (2017).
Murphy TK, Storch EA, Lewin AB, Edge PJ, Goodman WK. Clinical factors associated with pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. J Pediatr. 2012;160(2):314–319.
Sigra S, Hesselmark E, Bejerot S. Treatment of PANDAS and PANS: a systematic review. Neurosci Biobehav Rev. 2018;86:51–65.
Cooperstock MS, Swedo SE, Pasternack MS, et al. Clinical management of pediatric acute-onset neuropsychiatric syndrome: part III-treatment and prevention of infections. J Child Adol Psychop. 2017;27:594–606.
Chang K, Frankovich J, Cooperstock M, et al. Clinical evaluation of youth with pediatric acute-onset neuropsychiatric syndrome (PANS): recommendations from the 2013 PANS Consensus Conference. J Child Adolesc Psychopharmacol. 2015;25:3–13.
Murphy ML, Pichichero ME. Prospective identification and treatment of children with pediatric autoimmune neuropsychiatric disorder associated with group A streptococcal infection (PANDAS). Arch Pediatr Adolesc Med. 2002;156:356–361.
Maini B, Bathla M, Dhanjal GS, Sharma PD. Pediatric autoimmune neuropsychiatric disorders after streptococcus infection. Indian J Psychiatry 2012;54:375-7.
Thienemann, M et al. .Journal of Child and Adolescent Psychopharmacology.Sep 2017.566-573.http://doi.org/10.1089/cap.2016.0145
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Murphy T. K., Storch E. A., Lewin A. B., Edge P. J., Goodman W. K. Clinical factors associated with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. Journal of Pediatrics. The Journal of Pediatrics. 2012;160(2):314–319.
Murphy T. K., Sajid M., Soto O., Shapira N., Edge P., Yang M., et al. Detecting pediatric autoimmune neuropsychiatric disorders associated with streptococcus in children with obsessive-compulsive disorder and tics. Biological Psychiatry. 2004;55(1):61–68.
Murphy T. K., Snider L. A., Mutch P. J., Harden E., Zaytoun A., Edge P. J., et al. Relationship of movements and behaviors to Group A Streptococcus infections in elementary school children. Biological Psychiatry. 2007;61(3):279–284.
Luo F., Leckman J. F., Katsovich L., Findley D., Grantz H., Tucker D. M., et al. Prospective longitudinal study of children with tic disorders and/or obsessive-compulsive disorder: relationship of symptom exacerbations to newly acquired streptococcal infections. Pediatrics. 2004;113(6):e578–e585.
Leslie D. L., Kozma L., Martin A., Landeros A., Katsovich L., King R. A., et al. Neuropsychiatric disorders associated with streptococcal infection: A case-control study among privately insured children. Journal of the American Academy of Child and Adolescent Psychiatry. 2008;47(10):1166–1172.
Macerollo A, Martino D. Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS): an evolving concept. Tremor other Hyperkinet Mov. N Y. 2013:3.
Calaprice D, Tona J, Murphy TK. Treatment of pediatric acute-onset neuropsychiatric disorder in a large survey population. J Child Adolesc Psychopharmacol. 2018;28(2):92–103.
Frankovich J, Thienemann M, Rana S, Chang K. Five youth with pediatric acute-onset neuropsychiatric syndrome of differing etiologies. Journal of Child and Adolescent Psychopharmacology. 2015;25(1):31–7.
Calaprice, D et al. .Journal of Child and Adolescent Psychopharmacology.Mar 2018.92-103.http://doi.org/10.1089/cap.2017.0101
Murphy TK, Sajid M, Soto O, et al. Detecting pediatric autoimmune neuropsychiatric disorders associated with streptococcus in children with obsessive-compulsive disorder and tics. Biol Psychiatry. 2004;55(1):61-68.
Allen, Albert J. et al. Case Study: A New Infection-Triggered, Autoimmune Subtype of Pediatric OCD and Tourette’s Syndrome. Journal of the American Academy of Child & Adolescent Psychiatry, Volume 34, Issue 3, 307 – 311
Giulino L, Gammon P, Sullivan K, et al. Is parental report of upper respiratory infection at the onset of obsessive-compulsive disorder suggestive of pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection? J Child Adolesc Psychopharmacol. 2002;12(2):157-164.
Leslie DL, Kozma L, Martin A, et al. Neuropsychiatric disorders associated with streptococcal infection: a case-control study among privately insured children. J Am Acad Child Adolesc Psychiatry. 2008;47(10):1166-1172.
Mell LK, Davis RL, Owens D. Association between streptococcal infection and obsessive-compulsive disorder, Tourette’s syndrome, and tic disorder. Pediatrics. 2005;116(1):56-60.
Bessen DE, Lombroso PJ (in press): Group A streptococcal infections and their potential role in neuropsychiatric disease. Adv Neurol.
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Kurlan R, Kaplan EL. The pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection (PANDAS) etiology for tics and obsessive-compulsive symptoms: Hypothesis or entity? Practical considerations for the clinician. Pediatrics 2004;113;883-6.
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Toufexis, M. D., Hommer, R., Gerardi, D. M., Grant, P., Rothschild, L., D’Souza, P., Williams, K., Leckman, J., Swedo, S. E., & Murphy, T. K. (2015). Disordered Eating and Food Restrictions in Children with PANDAS/PANS. Journal of Child and Adolescent Psychopharmacology, 25(1), 48–56. https://doi.org/10.1089/cap.2014.0063
*All content of this article is for informational purposes only. Furthermore, it is not a substitute for professional advice, diagnosis, or treatment. For this reason, always seek the advice of your physician, therapist, or other qualified health provider with any questions or concerns you may have.
Does Your Child Have PANS/PANDAS?
Do you have a child who was totally “normal” one day, and the next day suddenly has new anxieties, fears, tantrums or rages, OCD behaviors and maybe even tics? Does your toddler have out-of-control tantrums, and your friends and parents think you may have parenting issues? Or do you have a child who has always been more anxious, but now has gradually worsening separation anxiety and mood swings, who used to be a great student but is now barely holding on because she can’t focus and has difficulty processing or remembering what she’s learned just the day before?
Are you thinking, and hoping:
It’s just a phase …
It could be, but it could be something more … it could potentially be an autoimmune illness that is affecting your child’s brain – something called Pediatric Acute Onset Neuropsychiatric Syndrome (PANS) or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Disease (PANDAS).
According to the American Academy of Pediatrics, at least 1 in 200 US school children has PANS (1), and that number is climbing every day, but many are misdiagnosed, or just plain missed.
Missed Diagnosis – Missed Opportunities
According to the PANDAS Parent Survey in April 2014 (2), it took over 3 years for 35% of children to be appropriately diagnosed with PANS/PANDAS. Almost 90% saw 3 or MORE doctors before being properly diagnosed. Over half of all children with PANS were misdiagnosed and mistreated for over 1 year. Most children are misdiagnosed as having psychiatric illness, behavioral problems, or parenting concerns. Many go through trials of multiple psychiatric medications and therapies with minimal to no benefit – because they’re treating the WRONG thing.
PANS is so much more than a “mental health disorder.” PANS/PANDAS is an immune-modulated, neuro-inflammatory encephalitis. What on earth does that mean?
Our kids’ brains are on fire!
Without appropriate antimicrobial, anti-inflammatory, and immune-modulatory treatments, our children with PANS/PANDAS will be facing an uphill battle in their fight to get well and heal their brains.
Unfortunately, by the time many children get the treatment they so desperately need, they’ve likely already been misdiagnosed and mismanaged. It is imperative that pediatricians, family practice doctors, pediatric occupational/physical/speech therapists, psychologists, psychiatrists and educators understand what PANS/PANDAS is. Providers who care for children play a vital role in recognizing how children may present with PANS/PANDAS so that they can be appropriately referred, diagnosed, and treated as soon as possible.
Only then is recovery possible.
What is PANS/PANDAS?
PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) is an autoimmune encephalitis that can have multiple triggers – infectious and non-infectious. Infectious triggers appear to be more common than non-infectious triggers. PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Disease) is a subset of infection-triggered PANS caused by streptococcal infection. However, many infections are now known to be possible triggers of PANS including Mycoplasma pneumonia, Influenza, Epstein Barr Virus, Lyme and other tickborne coinfections, HHV-6, HSV 1+2, Parvovirus B19, Coxsackievirus, Cytomegalovirus, and Candida. Non-infectious triggers include environmental toxins such as mold, heavy metals, and other toxic exposures, as well as metabolic disorders such as diabetes and lupus cerebritis. This diagram gives a better picture of how to think about PANS and all of its potential triggers.
How is PANS diagnosed?
The following are the current diagnostic criteria for PANS/PANDAS:
Symptoms of PANS/PANDAS can vary quite a bit, and the most common symptoms that I typically see in my patients include the following:
- Dilated pupils
- Separation anxiety
- Behavioral regression (baby talk, watching cartoons from when they were younger, etc.)
- Obsessive-Compulsive symptoms
- Tics (vocal and motor)
- Extreme mood swings/emotional reactivity
- Difficulty focusing
- Slower processing speed (harder time understanding questions and concepts)
- Poor short-term memory (doesn’t remember what they learned just the day before)
- Handwriting decline
- Food restriction (fear of choking, throwing up, contamination, etc.)
- Hand tremors
- Heightened sensory issues (can’t stand certain sounds, smells, textures)
- Urinary changes (frequent urination, feeling as though they always have some urine left)
- Sleep difficulties
Not always abrupt and dramatic …
While the current diagnostic criteria require an “ABRUPT, DRAMATIC ONSET” of symptoms, in my clinical experience and the experience of many other integrative and functional medicine practitioners – there are many children with a more “subacute” onset of symptoms. There’s a CHANGE somewhere in the past. Parents feel that their kid is different EVER SINCE some event. Maybe it was A CHANGE in mood, anxiety, sleep, focus/attention EVER SINCE the birth of a baby brother, or starting a new school, or after a divorce. A CHANGE that you think is “just a phase,” except the phase doesn’t end.
Consider the possibility of PANS/PANDAS whenever you find yourself thinking your child has changed, ever since …
If you don’t look, you won’t know, and yet another child will be missed…
Is There a Test for PANS/PANDAS?
PANS/PANDAS is a clinical diagnosis.
That means that there is no single test that will tell you if your child has PANS/PANDAS. Diagnosis starts with clinical suspicion.
While PANS remains a clinical diagnosis, the goal of testing is to determine the root causes(s) for why your child’s brain is on fire in order to better customize treatments.
Clinical history should be the guide as to which tests to run first.
Did your child have recent or recurrent strep infections in the past? Know that strep infections do not always present as classic strep throat. Kids can have strep in their throat, on their skin (impetigo), colonized in their noses, or as a bright red ring around their anus (perianal strep). Blood tests may reveal persistently elevated anti-streptolysin O (ASO) and anti-DNAse B strep antibody levels.
Did your child have any other infections that you remember may have occurred shortly before their neuropsychiatric symptoms appeared? Does your child get frequent cold sores? Do you hike in nature and enjoy camping as a family – could there possibly have been any tick bites in the past? Have you had any water damage in your home – could your child have been exposed to mold or mycotoxins? Any other possible toxic environmental exposures?
Quantitative IgG and IgM antibody levels should be assessed for possible infectious triggers of PANS, as indicated by clinical history or suspicion. These may include testing for Streptococcal infection, Mycoplasma pneumonia, Influenza virus, Epstein Barr Virus, Lyme and other tickborne coinfections, HHV-6 (the roseola virus), HSV 1+2 (the “cold sore” virus), Parvovirus B-19 (the “slapped cheek” virus), Coxsackievirus (the “hand-foot-mouth” virus), Cytomegalovirus, Candida, and potentially others as indicated by your child’s history. IgM antibodies reflect recent or active infection. IgG antibodies reflect past infection. However, it should be noted that the presence of elevated IgG titers may represent persistent chronic active infection despite negative IgM titers. While under-recognized, this phenomena was noted as early as 1991 with severe chronic active Epstein-Barr virus infection syndrome (3). Targeted antimicrobial treatment should therefore still be considered for a child presenting with neuropsychiatric symptoms and very elevated IgG titers despite negative IgM titers.
If all antibody levels are negative and no infection is detected, non-infectious triggers must be considered. Appropriate testing should be performed as indicated by clinical history for mycotoxins, heavy metal exposures and other toxic exposures.
Despite the above testing, there will be children with PANS who do not have clearly identifiable triggers. For those children, the “Cunningham panel” offered through Moleculera Labs (4) in the United States can be a valuable piece of the diagnostic puzzle. The Cunningham panel, developed by immunologist Dr. Madeleine Cunningham who has been on the forefront of PANS research, tests for 4 neuronal auto-antibodies – these are antibodies against parts of your child’s brain (Anti-Dopamine Receptor D1, Anti-Dopamine Receptor D2L, Anti-Lysoganglioside GM1, and Anti-Tubulin) as well as activity of the CaM Kinase II enzyme (Calcium-dependent Calmodulin Protein Kinase II) found to be elevated in patients with PANS.
“Conventional” Treatment Approaches to PANS/PANDAS
Treatment guidelines for the Clinical Management of Pediatric Acute-Onset Neuropsychiatric Syndrome were published in the Journal of Child and Adolescent Psychopharmacology in July 2017. “Conventional” treatment for PANS incorporates 3 arms – psychiatric/behavioral interventions (5), immunomodulatory therapies (6), and antimicrobials to treat and prevent infection (7).
From a behavioral and psychiatric standpoint, it is critical that children work with a psychologist or psychiatrist who understands what PANS/PANDAS is. Even in the San Francisco Bay Area where I practice, just down the street from the Stanford PANS Clinic, there aren’t enough psychiatrists who really understand what PANS/PANDAS is. In fact, there are still too many psychiatrists who are skeptical that PANS/PANDAS even exists!
I have a beautiful girl in my practice with PANDAS who is now thankfully recovered.. Her family moved away when she was in elementary school and returned during middle school. She had been at the top of her class academically, loved by everyone socially, and a star competitive athlete. When she moved back, I barely recognized her. She had started cutting, and had extreme anxiety and OCD symptoms. Her pupils were widely dilated, heart racing, hands tremoring, and she had bruises all over her shins because she had become so clumsy. She was failing academically because she just couldn’t understand what was being taught. And if she did understand one moment, it would be gone the next. When I asked her questions, she would stare blankly at me, trying to understand what I was asking her, until she finally got it and slowly began to answer. Her psychiatrist had placed her on 2 different psychiatric medications – neither of which was really helping. I knew she was a different kid in front of me than the kid I had known years before. So I ran multiple tests, and found that she had very elevated strep titers. I started her on antibiotics and other functional medicine supports, and within 4 weeks, her mother called and said:
Within 8 weeks, we were able to wean her off her psychiatric medications. She went back to her psychiatrist and told him what had happened, and his response was:
“You don’t have PANDAS.“
Because it didn’t have an acute and dramatic enough onset. Because she doesn’t fit the “classic” PANS criteria. And because he’s not even really sure that PANDAS exists …
School accommodations must be in place so that parents are immediately notified of infectious diseases that may trigger a PANS/PANDAS flare in their children. Educational adjustments must be made with an understanding of the waxing and waning nature of PANS/PANDAS. There will be weeks where children will be completely neurotypical, emotionally regulated and performing beautifully in school, and weeks where these very same children will have debilitating fears, OCD symptoms, tics, memory and cognitive processing issues, severe handwriting decline and extreme mood swings.
Cognitive behavioral therapy (CBT) and family therapy are important adjuncts to any medical intervention. If access to a qualified CBT therapist is unavailable, Dr. Dawn Huebner’s books cited below are invaluable tools to teach children and teenagers CBT techniques to manage their anxieties and OCD. Psychiatric medications may be necessary in times of crisis for severe OCD, anxiety, depression, ADHD symptoms, sleep disturbance, and other neuropsychiatric symptoms. However, these medications and behavioral interventions are only band-aids, and often not as effective as hoped until the underlying neuro-inflammation, infections, immune dysfunction, and other core clinical imbalances are addressed.
Anti-inflammatory and immunomodulatory treatments are often required in order calm the fire in kids’ brains, protect the brain and provide symptom relief in order for healing to take place. These therapies may include Nonsteroidal Anti-inflammatory Drugs (NSAIDs), oral and/or IV steroids, monthly high-dose Intravenous Immunoglobulin (IVIG), therapeutic plasma exchange or plasmapheresis, and IV rituximab. These treatments are designed to suppress the immune system, but do not address the underlying immune dysregulation that caused your child’s immune system to attack their brain in the first place.
Antimicrobial treatment and prophylaxis are critical in the management of PANS/PANDAS. Conventional antibiotic guidelines are more defined for the treatment of acute streptococcal infections in patients with PANDAS. The benefit of long-term antibiotic prophylaxis is less clear; however, most children do seem to benefit from prophylactic antimicrobials to reduce the likelihood of a PANDAS flare after repeat strep exposures.
There are fewer guidelines for the management of PANS triggered by non-streptococcal infections like viral infections or Lyme and other tickborne infections, and even fewer still for non-infectious PANS triggered by mold, heavy metals or other toxic exposures. For non-strep PANS triggers, working with an experienced functional and integrative medicine doctor is key.
The “conventional” treatment of PANS involves treating symptoms with cognitive behavioral techniques, psychiatric medications, immunosuppressive therapies, and antibiotics. While these may all be necessary, they often do not provide long-term relief. An Integrative and Functional Medicine approach is essential in identifying and treating root causes and core clinical imbalances from which many of our children with PANS/PANDAS suffer in order to achieve long-term remission and put out the fire in their brains for good.
Dr. Song’s 6-Step Approach to PANS/PANDAS
Integrative and Functional Medicine recognizes that there is no one-size-fits-all approach, especially for a condition as complex as PANS/PANDAS.
Treatment must be individualized to your child’s unique story.
My 6-Step Approach to PANS/PANDAS is not a protocol. It is not an algorithm. It is a guide that incorporates conventional treatments with integrative and functional medicine strategies that must be tailored to each child. I am sharing it now in hopes that it may be useful for parents who are embarking on a PANS/PANDAS journey with their child, for children with PANS/PANDAS who are “stuck” in their treatment journey, and for practitioners who are on the front lines helping our children in need.
STEP 1: IDENTIFY & TREAT THE ROOT CAUSE(S)
Let history be your guide to know which tests are most appropriate to do initially. Remember that there may be infectious triggers (Strep, Herpes 6, Herpes 1 + 2, Coxsackievirus, Parvovirus B-19, Epstein-Barr virus, Influenza, Mycoplasma pneumonia, Lyme and other tick-born infections, etc), and non-infectious triggers (heavy metals, molds, and other environmental toxins). There may be multiple triggers. And new triggers may arise with each “flare.” Treatments must be targeted appropriately.
Steps should also be taken to support the immune system to reduce the frequency of acute illnesses which may cause your child to spiral into a PANS/PANDAS flare. Immune supports may include optimizing Vitamin D levels, ensuring a phytonutrient-rich diet that reduces inflammatory foods (gluten, dairy, sugar, pesticides, processed foods, etc.), and optimizing lifestyle (sleep, exercise, time in nature, stress management tools).
STEP 2: PUT OUT THE FIRE
Inflammation must be reduced to protect the brain. Pharmaceutical options include “conventional” treatments with steroids and NSAIDs. More natural options include omega-3 essential fatty acids, curcumin, and antioxidants such as vitamin c and glutathione. Anti-inflammatory diet and lifestyle as mentioned above are key in putting out the fire and keeping it out.
STEP 3: KEEP THE FIRE DOWN
“Conventional” PANS treatments suppress inflammation, but this inflammation typically returns as medications wear off or new inflammatory triggers arise. Inflammation in an acute setting of infections or toxins is NOT a bad thing – in fact, inflammation is required to fight infections or toxic exposures. But once inflammation has done its job, the immune system needs to send out signals that it’s time to settle back down and restore a healthy, normal immune response. Chronic, unchecked inflammation is the problem in autoimmune diseases like PANS/PANDAS.
What is needed is a way to modulate the immune response so that a healthy immune balance can be achieved and maintained. Other than IVIG, which is inaccessible to many and does not provide lasting results in others, there are no conventional ways to modulate the immune response. On the other hand, functional medicine offers a variety of options that I have found to be very helpful in restoring a healthy immune response to keep the fire down. These immunomodulatory treatments may include Low-dose naltrexone (LDN), Specialized Pro-Resolving Mediators (SPMs), CBD oil and Chinese Skullcap (Baikal or Scutellaria baicalensis).
STEP 4: ADDRESS CORE CLINICAL IMBALANCES
PANS/PANDAS treatments should not just be about “killing” the bug(s). The goal of PANS/PANDAS treatments should be about restoring the WHOLE CHILD back to a state of optimal health. A Functional Medicine approach that identifies and treats core clinical imbalances is essential for whole child healing.
These Functional Medicine interventions may include:
- Identifying and treating nutritional deficiencies and insufficiencies
- Optimizing the gut microbiome
- Treating a leaky gut and resulting food sensitivities
- Addressing mitochondrial dysfunction
- Optimizing methylation
- Supporting detoxification
STEP 5: RESTORE THE BODY-MIND-SPIRIT CONNECTION
PANS/PANDAS is a journey with many ups and downs. The psycho-emotional and socio-emotional toll that PANS/PANDAS takes on each child and family cannot be discounted. Supporting the emotional health of the child and family with cognitive behavioral therapy, counseling, and support groups for the child, siblings and parents is essential. Stress management, mindfulness tools and vagus nerve work to restore the parasympathetic “rest-digest-heal” state are essential to not just restoring the mind, but to maintaining healthy immune, gut, and nervous systems. Read more about why this is so important in my article 6 Steps to a Stress-Proof Child.
STEP 6: INTEGRATIVE CARE
Be open and explore “alternative” modalities of care. Not one single practitioner has all the answers. And not one single treatment modality offers all the tools that your child may need in their healing journey. Modalities that may be beneficial include Homeopathy, Essential Oils, Acupuncture, Chiropractic, Osteopathy, and Energy Medicine, to name a few.
You can download my FREE 6-Step Approach to PANS/PANDAS HERE:
My parting message to you
To the mama and papa heroes going through a PANS/PANDAS journey with your child:
- Don’t give up
- Keep looking for answers, the right practitioner(s), the right team …
- Don’t let anyone tell you that you, or your kid, is crazy
To the brave practitioners who are willing to believe, and to think outside the box…
- Antimicrobial herbs for strep including: