Bonus episode, 56: PANS, PANDAS and Lyme with Dr. Nancy O’Hara
Diagnosis and treatments for children.
In this episode of Looking at Lyme, we explore how Lyme disease and other infections can appear dramatically different in children. Sometimes strep and other infections can even cause a sudden onset of neurological and behavioral changes in children. We welcome a world leader in this field to the podcast, Dr. Nancy O’Hara.
Demystifying PANS and PANDAS
Dr. O’Hara is a board-certified pediatrician who specializes in treating PANS, PANDAS, BGE (more about these acronyms below), Lyme disease and related infections, and other neurodevelopmental disorders. She is a leading trainer and mentor of clinicians in the United States and globally, educating medical professionals to recognize, diagnose and treat these disorders. She shares treatment protocols and other learning modules for physicians on her website, and further explores these disorders in her book Demystifying PANS/PANDAS: A Functional Medicine Desktop Reference on Basal Ganglia Encephalitis.
“With many of us (physicians), especially with Lyme, it’s just constant learning.”
Dr. Nancy O’Hara
Lyme disease hits home
Many physicians and scientists become experts in Lyme disease after a personal encounter with the disease, and Dr. O’Hara is no exception. She lives and works in Connecticut, a Lyme endemic area of the United States, where many of her patients and some family members have had encounters with the disease. When her son was bitten by a Lyme positive tick, coupled with a strep infection, he developed a host of symptoms including tics (involuntary movements or sounds). Dr. O’Hara started to learn more about Lyme disease and joined ILADS, the International Lyme and Associated Diseases Society, in order to find treatments for her son’s Lyme and the co-infection Bartonella. She empathizes with other parents who are trying to find appropriate treatments in a healthcare system in which Lyme disease is poorly understood.
Diagnosing children with Lyme
Dr. O’Hara explains that many children with Lyme disease present with a ‘terrible triad’ of symptoms; non-restorative sleep, cognitive impairments and fatigue. In her practice, Many children with Lyme disease and related infections also present with symptoms of obsessive compulsive disorder, attention deficit disorders, autism spectrum, anxiety, learning problems, dyslexia and intrusive thoughts.
“Many parents have the same problem in that a lot of doctors, at least allopathic doctors like myself, MD’s, do not believe in Lyme or do not understand or do not see it as a clinical diagnosis, so it’s even harder for those parents who don’t have the resources to be able to read and understand and get their child treated appropriately.”
Dr. Nancy O’Hara
PANS, PANDAS and BGE and the immune response
The term PANDAS, pediatric autoimmune neuropsychiatric disorder associated with strep, was coined by Dr. Due Swego in the 1990’s when she recognised that many children developed abrupt symptoms of OCD, tics, and anxiety after having a strep infection. In 2012 the term PANS, pediatric abrupt onset neuropsychiatric syndrome, was developed to include other infectious triggers including Lyme disease. Dr. O’Hara explains that BGE, basal ganglia encephalitis, is a more descriptive term for these processes where, instead of attacking the germ, the immune system attacks basal ganglia, causing inflammation (encephalitis).
“One of the things in children is the ‘terrible triad’ of Lyme, which is non-restorative sleep, cognitive impairments and fatigue, and you may see the fatigue and brain fog as I call it, in adults, but this is paramount in children and often it gets treated as ADHD or ADD or dyslexia or some type of executive function or learning problem, when at the root of it is tick-borne diseases.”
Dr. Nancy O’Hara
Clinical diagnosis
Dr. O’Hara explains that PANS and PANDAS are clinical diagnoses which often present as a sudden onset of behavioral or functional changes. For example, when a child suddenly develops handwriting deterioration, sleep disturbances or urinary symptoms, Dr. O’Hara will start to investigate patients for exposure to infections. She also notes that although the diagnosis is mainly a clinical one, blood tests that are most commonly positive are the inflammatory markers like ANA and CRP. In her practice, 60% of children with these disorders will have an elevated ANA.
Abrupt change in behavior and the role of nurses and teachers
Dr. O’Hara believes that nurses and teachers have a role to play in recognizing sudden changes in children. In order to better understand the knowledge level regarding PANS, PANDAS and Lyme, she developed a survey along with Sue Swedo. She explains that the governing bodies for neurologists, psychologists and psychiatrists told their members to not fill out the survey, and that the most responses came from nurses who are on the front line with the kids. In her experience, it is often the school nurses and teachers who may notice abrupt changes in a child and alert the family in the event that the changes are due to these disorders.
Immune dysfunction and the T cell
Rather than viewing these diseases as just an infection, Dr. O’Hara views them as “full body diseases” which often include immunodeficiency. In her practice, 30% of children are unable to adequately develop antibodies, which in turn creates challenges in antibody testing for diseases such as Lyme. For infection such as strep, the T cells population, particularly TH-17 is disturbed, leading to an opening of the blood brain barrier. This problem is seen particularly in children, and Dr. O’Hara notes that this allows toxins to enter the brain causing even more brain related symptoms.
“BGE is the abbreviation for basal ganglia encephalitis, which is what really happens…an infection triggers this, and rather than the antibodies…attacking the germ, strep for example, it instead attacks the brain, and very specifically, the basal ganglia within the brain, where the movement center, the OCD sort of center, the anxiety center are all located, and there’s inflammation, or encephalitis, inflammation of the brain in that area.”
Dr. Nancy O’Hara
A three pronged approach
Dr. O’Hara uses a three pronged approach with her patients; treating the underlying trigger such as Lyme disease, co-infections and other infections, treating the immune system, and treating the symptoms, starting with the most disruptive symptoms first.
The perinatal connection
Dr. O’Hara is also on the lookout for potential cases of gestational transmission of Lyme disease. When children present with autism, neurodevelopmental problems or even PANS or PANDAS, she inquires about the maternal history, where they lived, whether they’ve ever been treated with Lyme, and for how long. In her practice, she is noticing an increase in the number of children who may have acquired Lyme disease through congenital transmission.
“I think the biggest misnomer with any of these diseases is that it’s just an infection. It’s a full body disease, and there can be immunodeficiency. Thirty percent of the children will have a lack of ability to build up appropriate antibodies. So again, if you’re doing antibody testing for Lyme, Lyme co-infections, strep, you may well miss those children.”
Dr. Nancy O’Hara
Bartonella and Babesia on the rise
One of the co-infections of Lyme disease, Bartonella, is also prevalent in her patients. In Dr. O’Hara’s own practice, 42% of children have Bartonella. Symptoms include stretch marks that blanch; these often found in unexpected places, joint pain, specifically heel and foot pain, daily flares and rage. She notes that in her area, 40% of the ticks carry Babesia, 30% carry Borrelia and Bartonella, making Babesia more prevalent than Lyme and Bartonella in the tri-state areas of New York, New Jersey and Connecticut.”
The role of herbal treatments for children
Although Dr. O’Hara often treats acute cases of Lyme disease with antibiotics, she often quickly moves to herbals. As children often present with more than one tick-borne infection, she prefers to treat with herbal combinations rather than multiple antibiotics. She describes some of the herbal treatments she’s found to be most effective for various infections, including parasites, and touches on her approach to Herheimer reactions.
Resources for further learning
Dr. O’Hara continues to share her expertise through platforms such as the Medical Academy of Pediatric Special Needs, MAPS and the International Lyme and Associated Diseases Society, ILADS. -Dr. O’Hara is speaking at the ILADS Scientific Conference in Boston and is pleased to announce a pediatric arm at the conference where attendees can learn more about how to diagnose and treat PANS, PANDAS and tick-borne illnesses. Her website also contains a multitude of resources including learning modules and monthly recorded sessions.
Supporting parents and families
Dr. O’Hara suggests that parents learn how to properly remove a tick, get the tick tested, and understand early treatment options, preferably before their child is bitten by a tick. She notes that treating a tick bite with one day of doxycycline can interfere with early symptom recognition and testing for Lyme disease. She also urges parents to make sure they look after themselves as well. She suggests finding a group of like minded parents, and seeking out a practitioner that understands and is really going to listen. For siblings, Dr. O’Hara recommends the book Super Sam and the Battle Against PANS/PANDAS, and urges everyone to remember that it’s often the disease that’s causing children’s behaviors.
“The last thing I want to say for parents is don’t get overwhelmed by this. Try to do the next right thing. You might take one step forward and two steps back, but keep trying, keep working, keep finding like minded individuals and practitioners who will listen, and (your children) can get better. There is hope. It’s not false hope… it is possible.”
Dr. Nancy O’Hara
A comprehensive approach
Dr. O’Hara recommends some of the adjunctive approaches and dietary changes that she’s found most helpful in her practice. She also highlights the importance of diet in reducing inflammation and returning to health. She supports a diet that is rich in whole foods, vegetables and protein and low in sugar and junk food. She also notes that some children display symptoms of earlier infection when they reach adolescence. In closing, Dr. O’Hara offers encouragement regarding new antibiotics, antivirals and wants our listeners to know that there is hope and that children can get better.
Thank you Dr. O’Hara for sharing your expertise, resources and encouragement to families and health care practitioners!
