After a fun family hike in the woods, every parent checks for the big 3 — sunburn, poison ivy, and ticks. Plucking ticks from skin once arriving home from a hike isn’t such a big deal. However, should ticks be attached to the skin for a longer period of time before being removed, they can leave behind lyme disease, which is a big deal.

Though lyme disease is curable, it can trigger what’s known as pediatric acute-onset neuropsychiatric syndrome (PANS).

Lyme disease and PANS are both rare but serious conditions. While you shouldn’t obsessively worry about your child contracting them, it’s useful to know what to look for and how to seek help if symptoms arise.

What is Lyme Disease?

Lyme disease is a bacterial infection stemming from the bacteria, borrelia burgdorferi. Contraction results from a tick bite. In fact, Lyme disease is the most prevalent tick-borne disease. Black-legged ticks (deer ticks) can transmit the disease if they are attached to the skin for 36-48 hours.

Lyme disease was first discovered just outside of Lyme, Connecticut in 1975. Several children in the area began experiencing skin rashes, swollen joints, headaches, and fatigue. For a while, doctors thought it was an outbreak of a virus. Several children were diagnosed with juvenile rheumatoid arthritis.

That changed thanks to a couple of determined mothers who gathered information on the cases, took notes, and reached out to scientists.

In 1981, Dr. Burgdorfer switched from studying Rocky Mountain Spotted Fever to studying the illness that had become known as Lyme. He discovered the bacteria present in ticks and it was named after him the following year. We’re sure he was thrilled.

Stages & Symptoms

There are 3 stages of Lyme disease: early localized infection, early disseminated infection, and late disseminated infection. Symptoms vary at each stage.

The early localized stage is characterized by

  • Chills
  • Enlarged lymph nodes
  • Fatigue
  • Fever
  • Headache
  • Muscle aches
  • Neck stiffness
  • Sore throat

The above symptoms can show up 3-30 days after the tick bite as the incubation period of the infection varies. The skin surrounding the tick bite typically becomes red, with a lighter ring just beyond the bite site and a red ring surrounding the lighter ring. The rash looks very similar to a bull’s eye. The formal name of the rash is erythema migrans (EM).

The early disseminated stage is characterized by

  • Facial palsy
  • Joint pain
  • Neck stiffness
  • Swelling

These symptoms can appear a few weeks or a month after the initial bite. The EM rash typically spreads to other areas of the body and may or may not have the bull’s eye rings.

The late disseminated stage is characterized by

  • Arthritis
  • Confusion
  • Memory-loss
  • Severe fatigue

If Lyme disease goes undetected and untreated for months, more serious symptoms can arise such as chest pain and inflammation of the brain and spinal cord.

Does Lyme disease cause sensory processing disorder? It is unclear at this juncture whether or not Lyme disease can cause sensory processing disorder. Lyme disease can cause sensitivity to sensory input such as light and sound.

Lyme disease can sometimes have a co-infection (2 or more pathogens infecting a host), a common one being babesiosis caused by parasites in the blood called babesia. Co-infections are significant because they can make an illness more transmissible or speed up its progress.

Diagnosis

Doctors will likely perform a blood test to check for the presence of certain antibodies responding to bacteria in the blood. X-rays might be used to check for swelling in the joints. If neurological symptoms present, an MRI may be ordered to look for changes in the brain.

Antibiotic treatment is recommended first to eliminate the infection. Nonsteroidal anti-inflammatory drugs (NSAIDs) may be used to address inflammation throughout the body.

Why is prednisone bad for Lyme disease? Steroidal medicine is bad for Lyme disease because it can suppress rather than bolster the immune system. Not only that, it can prolong symptoms such as facial paralysis.

Steroids are sometimes prescribed because advanced symptoms of Lyme disease can be misdiagnosed as an autoimmune disease such as fibromyalgia.

Prevention

Lyme disease is fairly avoidable. The following are preventative measures

  • Wear long pants, socks, and boots/sneakers when in wooded areas.
  • Apply bug repellent when hunting, hiking, or camping. Try to find a brand that uses at least 20% DEET (the active ingredient in bug sprays).
  • Keep the lawn well-kept (cut the grass and rake the leaves as ticks love wild, unkempt areas) so ticks won’t gravitate.
  • Carefully check for ticks after a walk in the woods
  • Shower after a hike. Ticks tend to remain on the skin without attaching for a while. A shower could simply wash them away.

A small faction of those with lyme disease don’t fully recover after treatment. The CDC refers to this as post-treatment lyme disease syndrome. It’s during this phase that an autoimmune disorder is more likely to be triggered.

What is PANS?

PANS is an autoimmune neuropsychiatric disorder denoted by a sudden onset of neuropsychiatric symptoms. It is episodic, meaning symptoms can appear for a time and recede for a time. Within a 24-48 hour period, a child might exhibit obsessive-compulsive disorder (OCD) symptoms, eating disorder symptoms, or separation anxiety.

Dr. Susan Swedo discovered pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) in 1998. This autoimmune disorder primarily is brought on via a group A strep infection. Over the next 12 years, research found that other illnesses could cause these acute abnormalities, not just streptococcus.

PANDAS is now a subcategory of PANS.

How do you get PANS disease? PANS is often triggered by an infection or illness, but not always. PANS has been triggered by mononucleosis, mycoplasma pneumoniae (walking pneumonia), the flu, and lyme disease.

The ensuing changes in a child’s mental health are typically dramatic and occur practically overnight; however, in some cases, symptoms take longer to manifest.

Symptoms

  • Aggression: child becomes irritable or displays oppositional behavior.
  • Anxiety: child exhibits generalized anxiety to separation anxiety.
  • Behavioral regression: child acts younger than they are, perhaps reverting to baby talk or asking for additional help with tasks they typically do independently.
  • Separation anxiety: child may become clingy.
  • Deterioration in school performance or learning abilities: child’s concentration or memory is not as sharp. Interest may be lost more easily.
  • Emotional lability: child may jump from emotion to emotion suddenly or become depressed.
  • Motor or sensory abnormalities: child may become clumsy. Handwriting and drawing abilities regress. Physical or verbal tics may develop. Sensitivities to stimuli may manifest.
  • Somatic symptoms: child may experience sleep disturbances or urinary issues (frequency of urination or bedwetting).

Diagnosis

A PANS diagnosis requires documentation of compulsions (obsessively washing hands or needing constant affirmations), restrictive eating, and 2 of the above symptoms.

Diagnosing PANS can be difficult as the symptoms overlap with several other disorders. Doctors typically start with diagnosis of exclusion. This means doctors use the process of elimination to exclude potential illness options.

Illnesses with overlapping symptoms include the following:

  • Autoimmune encephalitis
  • Bipolar disorder
  • Eating disorders
  • Lupus
  • Rheumatic fever
  • Sydenham chorea
  • Tourette’s syndrome
  • Wilson’s disease

Also, doctors will look for elevated levels of antineuronal antibodies via the Cunningham Panel, a series of blood tests which help identify neuropsychiatric syndromes.

These antibodies activate calcium calmodulin-dependent protein kinase II (CaMKII) which in turn triggers encephalopathy, or inflammation of the brain. CaMKII can also inhibit dopamine receptors. This causes the sudden onset of obsessive-compulsive symptoms among others.

How many people have PANS? Scientists estimate roughly 1 in 200 children have PANS, although the precise number is unknown.

Does lyme disease cause PANS?

Lyme disease is one of several infections that can cause PANS. Because PANS is an autoimmune condition, this means the body’s immune system struggles to identify infections and ends up attacking itself.

Can you get PANS disease from a cat? Because the research on PANS is young at this time, it is difficult to determine whether or not PANS can be contracted from a cat.

If you’ve heard cats can pass PANS to your child, it may be because cat scratches and bites can transfer the bacteria bartonella. A 2019 study showed the possibility of bartonella causing PANS; however, the study called for further research in order to confirm.

Treatment Options

Treatment typically involves 3 steps:

  1. Addressing psychiatric symptoms.
  2. Eliminating the source of inflammation.
  3. Treating the immune system.

Psychiatric medications may be prescribed. Psychiatry and behavioral therapy can also play a role in treating PANS.

Immunomodulatory treatment may be necessary. Intravenous immunoglobulin (IVIG) treatment is meant to help those antibody deficiencies or weakened immune systems. IVIG also helps suppress inflammation. Healthy, purified blood plasma from donors is prepared for drip infusion.

Clinicians may also recommend peptide therapy as a treatment option to help boost the immune system. Peptides make up proteins which aid in a number of bodily processes, particularly informing cells what tasks they should carry out.

Peptide therapy helps restore the amount of peptides in the body. Administration is typically subcutaneous injection; however, there are creams and pills available.

Antibiotics are recommended to get rid of the underlying infection. Herbal antimicrobials may also be suggested.

Is there a cure for PANS disease? While most autoimmune disorders are incurable, PANS is actually curable. Many children experience full recovery with treatment.

How to Help a  Child Cope with PANS

Most adolescents are already going through enough developmental change without the added stress of an autoimmune disease. Odds are, your child may not fully understand the illness, which will only lead to further complications. The good news is there are a number of ways to help your child cope with PANS.

  • Communicate: Show willingness to discuss PANS. Your child needs to know the lines of communication are open. Study up on PANS and related topics, then encourage questions. It’s fine to acknowledge you don’t have all the answers as well. This could provide a nice segue into a conversation about how it’s okay to not fully understand everything that’s happening to us.
  • Consider additional elements of health/wellness: Be sure diet, exercise, and sleep are priorities. Diet should be well-balanced. Be mindful that certain foods such as sugar, dairy, or gluten can trigger symptoms. Some form of movement and exercise should be included in daily routines. Regulated mood and energy depend on quality sleep. A healthy lifestyle can potentially cut down on the exacerbation of symptoms.
  • Set schedules and boundaries: Establish as much routine/normalcy as possible. Though schedules and boundaries may have to be tweaked along the way, consistency goes a long way in helping a child feel comfortable and safe.
  • Prepare your child for what’s coming: As appointments and treatments are put on the calendar, let your child know what to expect from them ahead of time. Cutting out the element of surprise can provide a child with courage and confidence to face whatever lies ahead.
  • Encourage your child: If your child is having a rough day or week, remind him/her that tough times are temporary. Also, if you notice your child showing strength or maturity, reinforce the behavior with affirmations or even a reward. Don’t forget to celebrate victories!

Moving Forward

Your child’s health and wellness is our mission! At The M Center, we want you to feel confident in the diagnosis and treatment of your child. Call to schedule an appointment today!

Sources

  1. Breitschwerdt, E. B., Greenberg, R., Maggi, R. G., Mozayeni, B. R., Lewis, A., & Bradley, J. M. (2019). Bartonella henselae Bloodstream Infection in a Boy With Pediatric Acute-Onset Neuropsychiatric Syndrome. Journal of central nervous system disease, 11, 1179573519832014. https://doi.org/10.1177/1179573519832014
  2. Thienemann, M., Murphy, T., Leckman, J., Shaw, R., Williams, K., Kapphahn, C., Frankovich, J., Geller, D., Bernstein, G., Chang, K., Elia, J., & Swedo, S. (2017). Clinical Management of Pediatric Acute-Onset Neuropsychiatric Syndrome: Part I-Psychiatric and Behavioral Interventions. Journal of child and adolescent psychopharmacology, 27(7), 566–573. https://doi.org/10.1089/cap.2016.0145
  3. Murphy, T. K., Gerardi, D. M., & Leckman, J. F. (2014). Pediatric acute-onset neuropsychiatric syndrome. Psychiatric Clinics, 37(3), 353-374. https://www.liebertpub.com/doi/full/10.1089/cap.2017.0042
  4. Swedo, S. E., Frankovich, J., & Murphy, T. K. (2017). Overview of Treatment of Pediatric Acute-Onset Neuropsychiatric Syndrome. Journal of child adolescent psychopharmacology, 27(7), 562–565. https://doi.org/10.1089/cap.2017.0042

Thienemann, M., Murphy, T., Leckman, J., Shaw, R., Williams, K., Kapphahn, C., … & Swedo, S. (2017). Clinical management of pediatric acute-onset neuropsychiatric syndrome: part I—psychiatric and behavioral interventions. Journal of child and adolescent psychopharmacology, 27(7), 566-573. https://www.liebertpub.com/doi/pdf/10.1089/cap.2016.0145