Updated: Sep 1
OK, so I may ruffle some feathers here, after all I’m a therapist and not medically trained, BUT someone needs to bring this into discussion.
Firstly, let's start off by looking at the DSM-V diagnostic criteria of Tourette's,
To be diagnosed with TS, a person must: -have two or more motor tics (for example, blinking or shrugging the shoulders) and at least one vocal tic (for example, humming, clearing the throat, or yelling out a word or phrase), although they might not always happen at the same time. -have had tics for at least a year. The tics can occur many times a day (usually in bouts) nearly every day, or off and on. -have tics that begin before age 18 years. -have symptoms that are not due to taking medicine or other drugs or due to having another medical condition (for example, seizures, Huntington disease, or post viral encephalitis). (www.CDC.gov)
So now we have the diagnostic criteria of Tourette Syndrome in front of us, will someone please explain to me why so many individuals are being diagnosed with Tourette's when they fit none of the criteria?
If you or your child have had a sudden onset of tics, with no previous history of tics, no family link to tics, and only been ticcing for a handful of weeks or months, you DO NOT fit the criteria of Tourette's syndrome.
Why is it important I hear you say, tics are tics right?! - WRONG
Yes, tics can look the same across the spectrum of tic disorders BUT their route cause could be different.
Why does it matter where the tics came from?
The reason it matters comes down to understanding, education, support and intervention.
There has been a huge surge of individuals suddenly experiencing tics, tics which are presenting as big, bold, and often dangerous ( you can read more here about the sudden onset surge - https://www.tictocktherapy.co.uk/post/sudden-onset-of-tics-is-this-the-next-pandemic ), now many of these individuals are being rushed to A&E, who are then being urgently referred on, often to a general consultant and leaving with a diagnosis of Tourette's Syndrome, despite not fitting the diagnostic criteria.
If you do not fit the diagnostic criteria, challenge them! You have a right to request to be referred to a neurologist or tic specialist, you have the right for a second opinion, you have the right to challenge this.
What else could it be?
There are two other conditions I would really like you to research, firstly Functional Neurological Disorder (FND)/ Functional Movement Disorder (FMD) and Secondly, Paediatric Autoimmune Neurological Disorder Associated with Streptococcus (PANDAS).
Functional movement disorders (FMDs) are clinical syndromes defined by the occurrence of abnormal involuntary movements that are incongruent with a known neurologic cause and are significantly improved on neurologic exam with distraction or nonphysiologic maneuvers
FMD's have numerous characteristics, which may consist of
●History of a precipitating event
●Fast progression to maximum symptom severity and disability
●Movement abnormality that is incongruent with organic disease (eg, bizarre, multiple, or difficult to classify)
●Inconsistency over time with variable amplitude, frequency, or distribution of the movement
●Ability to trigger or relieve the movement with unusual or nonphysiologic intervention (eg, trigger points on the body, application of a tuning fork)
●Decreased movement of the affected body part with distraction
●Increased movement of the affected body part during observation or examination
●Entrainment of movement (eg, tremor) to the frequency of repetitive movements
●Deliberate slowness of movement
●Association with false (or "give-way") weakness, sensory loss, and pain
●Functional disability out of proportion to exam findings
●Unresponsiveness to drugs for organic movement disorders
●Responsiveness to placebo drugs and suggestion
FMD information taken from (https://www.uptodate.com/contents/functional-movement-disorders)
PANDAS is a clinical diagnosis based on 5 distinct criteria as developed by the NIMH and listed below. Currently there are no definitive diagnostic laboratory tests for PANDAS, but the Cunningham Panel™ is the first and only test that was developed specifically as an aid to doctors in making their diagnosis.
Presence of clinically significant obsessions, compulsions and/or tics
Unusually abrupt onset of symptoms or a relapsing-remitting course of symptom severity
Pre-pubertal onset. Symptoms of the disorder first become evident between 3 years of age and puberty
Association with Group A Streptococcal (GAS) infection. Note: In PANDAS, GAS infections may be present without apparent pharyngitis (i.e., no complaints of a sore throat)
Association with other neuropsychiatric symptoms
Common PANDAS Symptoms
The most common accompanying symptoms listed by the NIMH include:
Severe separation anxiety
Motoric hyperactivity, abnormal movements, and a sense of restlessness
Sensory abnormalities (sensitivity to light or sounds), distortions of visual perceptions, and occasionally, visual or auditory hallucinations
Difficulties concentrating, and loss of academic abilities, particularly in math and visual-spatial areas
Increased urinary frequency, or sense of urgency and/or a new onset of bed-wetting
Irritability (sometimes with aggression) and emotional lability. Abrupt onset of depression can also occur, with thoughts about suicide
Developmental regression, including temper tantrums, “baby talk” and handwriting deterioration
Parents can usually remember the day their child’s behavior changed. PANS and PANDAS is characterized by an abrupt onset of obsessive-compulsive disorders and/or tics.
PANDAS information taken from ( https://www.moleculeralabs.com/pandas-diagnostic-criteria
I'm writing this article to empower you to be brave enough to challenge medical professionals who are dishing out Tourette's diagnoses like they are earning commission.
It IS important to have the correct diagnosis, to be able to access the correct support and intervention so please don't be afraid to do so.
Remember Educate yourself enough to feel Empowered, so you can Advocate for you/ your child.