PANS/PANDAS is not the same as traditional OCD or a tic disorder; the onset and concurrent symptoms and, in some cases, the severity of the OCD set these disorders apart. It is critical to get the diagnosis correct because the treatment plans for PANS/PANDAS and Tourette Syndrome are quite different. Unfortunately, there is a lack of universal knowledge about the differences, similarities, and treatment of these disorders. We must continue to advocate and educate to narrow the knowledge gap to ensure proper diagnosis and treatment.
Thank you to Romy Worthington for all her work spreading awareness about PANS PANDAS and tics. If you are not familiar with her story, please read our interview with this incredible young lady. Please read her article on the overlap between PANS/PANDAS and Tourette Syndrome.
PANS PANDAS and Tourette Syndrome – The Overlap
Written by Romy Worthington. Edited by Gabriella True.
It can be challenging to distinguish PANS/PANDAS from Tourette Syndrome or other tic disorders, leading to misdiagnosis or underdiagnosis of PANS/PANDAS. The lack of understanding about these disorders can cause skepticism towards PANS/PANDAS, as people believe the symptoms are only a result of Tourette’s. It is important to note that patients may appropriately be given both diagnoses.
Often in the PANS/PANDAS community, we see two different scenarios involving Tourette Syndrome. First, commonly someone who meets the diagnostic criteria of PANS/PANDAS is misdiagnosed as only having Tourette Syndrome, which blocks them from appropriate treatment. The other scenario is when someone has been diagnosed with PANS/PANDAS, but a new doctor comes in and says, no, you don’t have that; it doesn’t exist, leaving the patient and family confused, frustrated, and the patient undertreated. Ultimately, receiving the incorrect diagnosis can prevent access to proper care.
Tourette Syndrome and PANS/PANDAS do have similarities and can sometimes be easily confused, but the numerous differences distinguish these conditions. Please note that each point below will not apply to everyone, as PANS/PANDAS and Tourette Syndrome are diverse conditions that can affect everyone uniquely.
Similarities:
- Motor and vocal tics can occur in both Tourette Syndrome and PANS/PANDAS. To receive a Tourette Syndrome diagnosis, one must have both motor and vocal tics for at least one year, along with a few other criteria. Around 70% of people with PANS/PANDAS have tics. In PANDAS, tics and OCD are the major symptoms, but symptoms described in the PANS diagnostic criteria can and usually co-occur. Technically, a PANDAS diagnosis only needs to have either tics or OCD; one doesn’t have to have both. For a PANS diagnosis, one has to have OCD or Restricted Food Intake along with comorbid symptoms from two out of seven categories, including movement disorders and tics, but again, tics are not required.
- All tics are sudden onset whether one has a diagnosis of a tic disorder, Tourette Syndrome, or PANS/PANDAS. However, if tics and comorbid symptoms reach full severity within a day or two, a complete evaluation for PANS PANDAS should be considered.
- OCD is a major symptom of PANS/PANDAS, and OCD also commonly co-occurs with Tourette Syndrome.
- ADHD frequently co-occurs with Tourette Syndrome; people with Tourette Syndrome and co-occurring ADHD often have ADHD symptoms from a young age. While people with PANS/PANDAS can experience ADHD-like symptoms too, symptoms can vary from flare to flare, so they may not always have ADHD-like symptoms, or they might not start during the same exacerbation as the tics do. For example, in PANS, one can have OCD, tics, and urinary frequency as their main symptoms in one flare but have OCD, tics, and ADHD-like symptoms in a secondary flare.
- Rage can occur in Tourette Syndrome and PANS/PANDAS.
- All three disorders often start in childhood. However, the onset of PANS can occur in adulthood. Despite the Tourette Syndrome diagnostic criteria stating symptoms must begin before the age of 18, there have been cases of adult-onset, but typically there were soft signs throughout childhood that went unrecognized.
- Complex tics such as echophenomena, coprophenomena, paliphenomena, mental tics, sensory tics, and phantom tics can occur in Tourette Syndrome and PANS/PANDAS
- Both Tourette Syndrome, PANS/PANDAS, and OCD affect the Basal Ganglia functioning in the brain, explaining why some symptoms can be similar.
Differences:
- The cause of Tourette Syndrome is not known. Strep infections trigger PANDAS, and it is a form of basal ganglia encephalitis. PANS has multiple etiologies and disease mechanisms.
- People with PANS/PANDAS can experience symptoms that do not typically occur in people with Tourette Syndrome. These symptoms may include enuresis and increased urinary frequency, psychosis, difficulty swallowing, low muscle tone, coordination changes, a deterioration in handwriting and maths ability, developmental regression, intense brain fog, restricted food intake, personality changes, dilated pupils, and memory decline. Please note that not everyone with PANS/PANDAS will have all these symptoms.
- No matter the diagnosis, the onset of motor or vocal tics can be stressful and disruptive, especially when severe. However, PANS/PANDAS symptoms can cause a change in someone’s personality, adding to the patient’s distress; they can alter how one acts and perceives the world. Some people with PANS experience brain fog, regression, irritability, personality changes, memory problems, oppositional defiance, personality change; some describe it as losing themselves. Saying this, however, some people’s PANS/PANDAS may present predominantly with tics, OCD, and ADHD, so their symptomatic profile will be similar to Tourette Syndrome. Thus, examining the timing of the onset of symptoms and possible triggers such as strep or other infections is critical.
- Tourette Syndrome symptoms can wax and wane, meaning that the severity of the condition can fluctuate on a daily, weekly, or monthly basis. Typically the PANS/PANDAS disease course is one in which symptoms relapse and remit depending on exposure to a new trigger or implementation of treatment; recovery from a flare/exacerbation can often be sawtooth with good/bad days or weeks. PANS/PANDAS patients may have some residual symptoms between flares/exacerbations, but the neuropsychiatric symptoms abruptly return when exposed to a trigger.
- The onset of PANS/PANDAS is usually triggered by an infection, though PANS can also have non-infectious triggers. An infection does not trigger the onset of Tourette Syndrome. Still, people with Tourette syndrome can see a slight worsening in symptoms when ill.
- Antibiotics often reduced or resolve PANS symptoms, whereas they do not have the same effect on Tourette Syndrome symptoms. Note, a bacterial infection does not trigger all PANS symptoms, so antibiotics do not work always work. Also, some patients may not respond well to a specific antibiotic, requiring a different kind. Additionally, PANS PANDAS patients need to treat their dysregulated immune system; treatment for this depends on symptom severity. Treatment for immune issues and inflammation ranges from NSAIDs to IV steroids to IVIG or other immune modifying medications.
- In Tourette Syndrome, comorbid conditions may develop independently of the onset of tics. For example, in early childhood, someone with Tourette Syndrome may have had ADHD traits but then later develop OCD, then in adulthood, develop depression. Whereas, in PANS/PANDAS, tics have a concurrent onset as the other symptoms. Because someone with PANS/PANDAS can develop new comorbid symptoms with each flare, the difference can seem confusing at first. But, again, the new symptoms in PANS/PANDAS are co-occurring with the onset tics and other symptoms. For example, as a young child, someone with PANS/PANDAS may abruptly have tics, ocd, separation anxiety, sensory processing issues, and depression but then in another flare, abruptly have tics, ocd, and this time ADHD-like symptoms. It is the fact that the various symptoms have co-occurring abrupt onset that distinguishes the gradual onset of the multiple symptoms someone with Tourette disorder may get over years.
Why is a Misdiagnosis Harmful?
A misdiagnosis can be harmful for many reasons; the first reason is that it prevents people from accessing the correct treatment. The interventions required to alleviate symptoms in PANS/PANDAS are different from the strategies used to manage Tourette Syndrome. While the typical psychotherapeutic methods to manage tics are sometimes utilized in PANS/PANDAS, they may not target all the symptoms or the medical complexity. PANS/PANDAS treatment requires a three-pronged approach. 1) Remove the source of inflammation, 2) treat the dysregulated immune system, and 3) treat symptoms psychotherapeutically as needed. For example, suppose someone with tics also has PANS/PANDAS but has not been diagnosed. In that case, they may experience a modicum of improvement in their tics from psychotherapeutic intervention typically used to manage tics. However, this singular approach is insufficient to treat the tics or the other symptoms resulting from neuroinflammation and a dysregulated immune system with lasting remission.
The second reason why misdiagnosis is harmful is they may not be prepared for what could happen to them when they experience another flare. So when they get an infection that triggers new PANS/PANDAS symptoms, they do not know why or how to treat them. As a result, they may end up receiving a long list of diagnoses that keep adding on top of each other. Having new symptoms out of the blue can be terrifying and incredibly stressful. Then when treatment is not working, the stress is amplified. But, if they had initially received a PANS/PANDAS diagnosis, they would know these symptoms have the same root cause, and the three-pronged approach can potentially lead to lasting remission or at least a lessening of the severity of symptoms.
Tourette Syndrome and PANS PANDAS can be serious conditions that have a considerable impact on a person’s life and can affect a person’s ability to perform daily tasks. So getting the correct diagnosis or diagnoses can have a lasting effect. Therefore, it is crucial to find a doctor who can do a thorough investigation and medical examination to see whether a patient’s tics are due to Tourette Syndrome, another tic disorder, PANS/PANDAS, or another condition.
Disclaimer: I am not a medical professional; this is not a substitute for diagnosis or treatment from a qualified physician; this is for educational purposes only. For medical advice, please see a medical practitioner. I do NOT claim to treat, cure or mitigate any condition.
For more information on Sensory and Motor Abnormalities, including Tics in PANS PANDAS, see
Article: Dr. Susan Swedo on Relationship between PANS & PANDAS and Tourette’s Syndrome
Dr. Swedo on Tourette Syndrome
Gabriella True
