PANDAS Signs and Symptoms
Signs and Symptoms of PANDAS: A Closer Look
PANDAS/PANS includes a range of symptoms that can suddenly present in a variety of often devastating ways. Many of these symptoms, in varying degrees of severity, are present simultaneously.
PANDAS/PANS Comprehensive Symptom Presentations
The severity of symptoms and the onset of PANDAS/PANS will vary from patient to patient, but the symptoms usually present suddenly and intensely. Symptoms can get better and then get worse again, presenting in what’s known as an episodic manner. Following is an expanded list of ways symptoms can persist together with assessment tools to help you define the level of impact to your child.
- Obsessive-Compulsive Disorder (OCD): OCD can manifest in different ways in young children. Learn more here.
- Restrictive Eating: This includes selective eating and food refusal. There can be a variety of reasons why the child experiences this, including contamination fears, sensory sensitivities, trouble swallowing, fear of vomiting or weight gain and more. If restrictive eating results in severe weight loss, call your provider immediately.
- Tics: Tics are repetitive movements or sounds that can be difficult for a child to control. Motor tics can include eye-blinking, head-jerking, shoulder-shrugging, nose-twitching and facial grimacing. Some motor tics are a series of movements performed in the same order. Vocal tics can include grunting, humming, throat clearing, coughing or repeating words or phrases. Some children are able to suppress tics temporarily, but doing so can cause extreme discomfort. Relief comes through performing the tic.
- Emotional Lability: Emotional lability includes not being able to control one’s emotional response, such as uncontrollable crying or laughing. This is a neurological symptom.
- Irritability and Aggression.
- Behavioral/Developmental Regression: Loss of communication and social skills (i.e., baby talk, sucking fingers, chewing on clothing).
- Deterioration in School Performance: This includes deterioration in math skills, inability to concentrate, difficulty retaining information and school refusal. School performance can also be a result of another contributing symptom, such as OCD or severe separation anxiety.
- Changes in Handwriting: This includes margin drifts and legibility.
- Sensory Sensitivities: This can include being sensitive to touch, sounds and noise. Simple touches may feel like they are hurting. For example, being unable to tolerate the way socks feel or the texture or temperature of certain foods. Sensory processing problems can also cause difficulty in finding an item when it is among a vast selection of items. For example, a child may have a hard time finding a shirt in a full dresser or finding words in a word search.
- Somatic Signs: This includes sleeping difficulties, enuresis, frequent urination and bed-wetting.
- Choreiform Movements: Here is an example of choreiform movements. The child is attempting to hold his hands straight out and is trying not to move his fingers. Video link: https://fb.watch/6j7AyiC7K9/
- Severe Separation Anxiety: Separation anxiety in an older child will present differently. For example, a child may be unwilling to leave the house or their bedroom.
- Hallucinations: This includes both visual and auditory hallucinations.
- Fight or Flight Response: This can be displayed in various ways, like running from parents or extreme fear responses when an event is perceived as stressful and frightening.
- Dilated Pupils (mydriasis): This can be intermittent during emotional outbursts.
- Rheumatic Pain of Joints.
- Urinary Problems: This includes daytime/nighttime wetting accidents or frequent urination.
PANDAS/PANS Symptom Assessment Scales
PANDAS and PANS are clinical diagnoses that are heavily reliant on symptom presentation.
A clinical diagnosis is a diagnosis not solely based on a diagnostic test such as a blood test. Rather, the diagnosis is based on the collection of signs, symptoms, medical history and laboratory findings. Currently, there is not a 100% definitive test for PANDAS or PANS.
Showing the severity of symptoms, the duration and the onset are important tools in determining a possible diagnosis. The assessment scale below will help parents present their child’s symptomatology.
The following assessment scale was developed by Tanya Murphy, M.D., and Gail Bernstein, M.D., to quantify the frequency and severity of obsessions and compulsions. (citation: Predictors and Prospective Course of PANS: A Pilot Study Using Electronic Platforms for Data Collection Elizabeth C. Harris, Christine A. Conelea, Michael T. Shyne, and Gail A. Bernstein. Journal of Child and Adolescent Psychopharmacology. March 2021).
OCD/Tic Assessment Scales
The following scales are what doctors use to measure the severity of OCD and tics. Review these scales, show them to your doctor and communicate that your child went from normal (1–5) to abnormal levels (10 and above) overnight. OCD may present as severe anxiety. Do not assume your child does not fall into the realm of OCD because they do not show the “stereotypical symptoms” of OCD, such as obsessive hand washing and fear of germs.
Caregiver Burden Assessment Scale
This caregiver burden scale helps assess perceived burden among caregivers of family members with dementia. However, this same scale can be used to articulate to medical professionals the severity of your situation.
Papers regarding caregiver burden:
- Implications for Advanced Practice Nurses When PANDAS is Suspected: A Qualitative Study
- The Burden of Caring for a Child or Adolescent with PANS: An Observational Longitudinal Study
- Family Impacts Reported by Parents Raising Children with PANS
Learn More About PANDAS
PANDAS and PANS is a clinical diagnosis based on the collection of signs, symptoms, medical history and laboratory findings that cannot be explained by any other neurological or medical disorders. PANDAS has five distinct criteria for diagnosis.
When PANDAS/PANS is treated early and in a timely fashion, it can remit entirely. Treatment involves addressing both the physical and psychiatric symptoms. Early treatment of PANDAS is important when reducing the duration and intensity of a patient’s symptoms.
Frequently Asked Questions
As awareness and research of PANDAS continue to grow, parents, providers, caretakers and supporters tend to ask the following questions frequently.
Help us continue to support the children and adults living with PANDAS/PANS.