- Marie Adèle DavisExecutive Director, Canadian Paediatric Society
Canadian Paediatric Society: Educate your members about PANDAS/PANS and help our children!
Please help us encourage the Canadian Paediatric Society (CPS) to educate their physicians so that children and families suffering from PANDAS and PANS can have fair and timely access to effective treatments and support.
We petition the Canadian Paediatric Society to educate their organization about these important disorders that could be affecting as many as 1 in 200 children in our country. We ask that the CPS promptly create and publish Position Statements and Practice Points for PANDAS and PANS with the newest data and standard practices and that they alert their members to this information immediately.
PANDAS and PANS are autoimmune conditions that usually have a sudden onset between the average age of 4 and 7 (but can occur at any age and in some cases adulthood) resulting in a significant change in the behaviour or personality of a child. These behaviours can look like OCD, anxiety, tics, ADHD, fine motor decline, aggression and much more. There is a misdirected immune response to infection (strep, mycoplasma, flu, lyme, etc) that targets healthy tissue in the portion of the brain that controls emotion, movement, spatial learning and more. These conditions are often being missed or misdiagnosed as psychiatric disorders when the root of the problem is actually an infectious trigger. (please see bottom of petition for more detailed information and links to resources on PANDAS/PANS).
Most families discover the changes in their child's behaviour but even after visiting their doctor out of concern they are making the link to PANDAS/PANS on their own. These families are often then told by their medical practitioners that these disorders do not exist, are too controversial to treat or they are misdiagnosed as a psychiatric disorder. The children are then treated improperly with the wrong medications, their condition worsens and they slip further and further away from being someone their family recognizes. The obstacles these families face put them through immense emotional and physical struggle and isolation and the ripple effect is trickling down through our communities. It is putting an unnecessary strain on our community services, school educators and support staff and our medical system.
PANDAS and PANS can be treated more effectively the sooner the diagnosis is made and the sooner the treatment begins. This is not happening for the majority of the families whose children are suffering in Canada. Families are still spending upwards of a year or more seeing different doctors, waiting on waitlists or spending large sums of money to seek medical care in the United States.
The National Institute of Health in the United States recognizes these disorders and is educating physicians around the world. Stanford University, the University of Arizona, and many more physicians in the US are providing specialized treatments for PANDAS and PANS patients and we now have one PANDAS/PANS clinic open in Saskatoon, Saskatchewan. Yet still, in Canada as a whole, we have an extremely small number of doctors willing to diagnose and treat our children and it is no where near enough for the amount of children who are suffering.
These disorders are very real and debilitating, treatment does exist, and children can get better. They do not need to be given a handful of misdiagnosed psychiatric disorders and improper treatment that can lead to a risk of suicide, severe eating disorders or a life long struggle with tics and mental illness. They need treatment to treat the infections and the inflammation such as antibiotics, anti-inflammatory medication and IVIG treatments.
Our families are working very hard to create awareness and educate our communities but we need our doctors' help! We need your help! Please help us to get our Canadian Medical Community educated and help us get our healthy, happy, children back!
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus
It describes a subset of children or adolescents who have either an abrupt onset of Obsessive Compulsive Disorder or Tic Disorder symptoms or an acute worsening of symptoms following a Streptococcus Infection
Pediatric Acute-Onset Neuropsychiatric Syndrome.
It is the term used to describe the cases where there is a link to symptom onset with other infections, not only streptococcus infections. The more commonly known term P.A.N.D.A.S is a subset of the wider definition of P.A.N.S.
Obsessive Compulsive Disorder
Tics (motor, vocal, echolalia)
Emotional lability (including irritability, aggression or depression episodes, inability to control tears or laughter)
Behavioural regression (baby-talk, temper tantrums)
Developmental regression (fine motor skills, handwriting)
Decreased ability to concentrate and/or hyperactivity
Loss of abilities in mathematics and visual-spatial areas
Sensory issues (sound, smells, light, clothing)
Urinary issues (increased frequency, bedwetting or daytime enuresis)
- Executive Director, Canadian Paediatric Society
Marie Adèle Davis
To : The Canadian Paediatric Society
Attn: Marie Adèle Davis, Executive Director
In 2015 PANDAS/PANS Ontario helped to coordinate a proposal to have Dr. Susan Swedo, lead researcher for PANDAS/PANS at the NIMH in the US, come and speak at your annual conference in Toronto. Unfortunately, her proposal was denied.
After our organization spent two days educating delegates from our booth at the exhibition it was clear that there were many paediatricians who knew of this disorder and were eager to have more information. They wanted to know about the new research, how to treat this or where they could send patients to receive specialized treatment.
We contacted your organization again offering our assistance in coordinating some learning opportunities for your members and unfortunately have not seen any progress on this initiative.
After emailing your organization again last week, we have not received a response, and are hoping that as the executive director you will promptly take this matter into consideration and provide a response swiftly.
Most families in Canada who are dealing with PANDAS/PANS are receiving inadequate treatment for these disorders and are at times even being humiliated and disrespected in their paediatricians' offices when asking for an assessment.
We are coming to you asking for help because your organization is one the most well known and respected sources of information for our medical practitioners. You have the capacity to set an example for other leading medical organizations around the world. It is our hope that you will review the links and information provided in our petition and take the time to familiarize yourself with PANDAS/PANS. Please read the comment section in our petition and hear how these families are being impacted and please find it in your heart to update your organization and do everything you can to help our children receive adequate treatment on par with our neighbours in the United States.
We are asking that at minimum, a Position Statement and Practice Point be developed on these disorders and be made available to your members to give them some guidance when our families visit their offices looking for help.
We look forward to your response and are happy to provide you with any additional resources or contact information for the leading PANDAS/PANS specialists and organizations in the United States.
Kerry Henrikson, Executive Director
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