Episode 52: A Parent’s Perspective on PANDAS/PANS

https://www.podbean.com/media/share/pb-mh8qu-f937ae

In this episode, I speak with Marnie (IG: @marniedeschenes and FB: Marnie Deschenes) and Richard Deschenes on their family’s experience with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections). They also speak about their recent efforts to help the PANDAS/PANS community through establishing the “Inflamed Brain Alliance”.

As always, this podcast is based on experiences and should not be construed as medical or professional advice. Please speak with a medical professional.

As a parent, it can be a challenge when you don’t feel well. But when your child is struggling, it turns your whole world upside-down. If your child has multiple symptoms that are seemingly unrelated or easily mistaken for other issues, it can be hard to find answers. If you’ve noticed sudden and worrying behavior changes (like anxiety, OCD, tics, regression), this quiz designed by Drs. Ellen and Scott Antoine, which I interviewed on Episode 50 of the Learning to Slay the Beasts Podcast, may have some answers for you.

Take the quiz here: https://bit.ly/2QmpFac Feel free to send this link to anyone that you know that may benefit from the quiz. It is absolutely free.

My new middle-grade fiction novel Pendulum by S.E. German is available on FriesenPress, Barnes and Noble, Amazon Worldwide (Amazon.com,  Amazon.ca) and more!

The novel follows a young boy whose personality and behaviour changes overnight from happy, funny, energetic and silly to anxious, obsessive, emotional, angry and depressed. After visiting over 20 doctors, getting seven misdiagnoses and his mental health declining further, the boy is finally diagnosed with a little-known and understood disorder without a cure called Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS). The heartwarming story follows the boy as he becomes a middle-schooler with regular school and peer challenges and continues to cope with mental health issues like anxiety, OCD and depression.

Follow me on IG: @saraladygluten and visit the Learning to Slay the Beasts Blog: www.theallergybeast.wordpress.com

PANDAS and PANS

There is a relatively little known disorder that has effectively become the bane of my existence.

As I have outlined on the blog, my daughter has food allergies and more recently, she has developed asthma, which I understand tend to coexist. I hate this for her. I am terrified of potential reactions. I feel her frustration in having to take epipens everywhere, and now inhalers, and truthfully, it’s tough for mom to remember them as well!

But, there is a clear path for managing allergies. There are tests that can prove that they exist. There is medication available for doctors to prescribe. There are resources on how to best avoid the foods and handling difficult situations and reactions. There are support groups for those that have food allergies. There are teal pumpkins at Halloween and nut-free schools. There are laws that require foods to be properly labelled.

Yes, much more can be done, including a cure, and there is no doubt in my mind that all of this infrastructure took tons of effort by those families affected by food allergies.

But then there’s my son. He has a disorder called PANDAS. And there is nothing. There is virtually no help available for him, his family, his teachers, even his doctors. There are bits of information becoming available but it has been so slow while he continues to struggle with the disorder. Don’t get me wrong, every bit of progress is something, but the struggle to help him is real. The fact that a disorder has to be normalized and publicized in order for help to be provided is frustrating. Do I need a celebrity to promote PANDAS in order for it to be taken seriously?

PANDAS is a neuroimmune disorder, Pediatric Automimmune Neuropsychiatric Disorder Associated with Streptococcus. The brain becomes inflamed as the body produces antibodies that it believes are needed to fight a nonexistent Strep virus. It manifests itself through tics, OCD, anxiety and other symptoms. The response is essentially a mix of behavioural and autoimmune issues.

This disorder is virtually unknown beyond those of us that have children with it. That leads to quizzical looks from teachers and doctors alike. It means no funding, no resources and no clear path forward to a cure, or even treatment.

It leads to second guessing your parenting constantly as the rollercoaster ride continues for your child. It leads to frustration with the medical system as the uncertainty of the health profile of your child continues. It leads to a waste of time, effort and money as one constantly tries to find treatment that all seem to be dead ends or snake oil. It leads to ongoing heartache, stress and pain.

PANDAS is real, as are the feelings that the child and family experience, and they need to be taken seriously. I want to be part of the solution but that is challenging while also being weighed down by the disorder.

#PANDAS #PANS #neuroimmune