This PANDAS Sucks Blog Series, GR8 ADVOC8 on the 8s, focuses on ways that you can Advocate and spread Awareness and Understanding about PANDAS/PANS all year long. Published on the 8th of every month, we’ll share at least 3 easy ideas on how you can advocate for PANDAS/PANS. Sometimes I add a Bonus Advocacy activity. You can practice PANDAS/PANS Advocacy any day of the year, and this series will give you some old and some new ideas on how to be a GR8 ADVOC8 for PANDAS/PANS. And I will always preach the importance of self-care because you have to put on your oxygen mask before you put the mask on other people. 🙂
Here are some actions GR8 ADVOC8s can take in AUGUST:
1. Order the Book PANS, CANS, and Automobiles by Jamie Candeleiria Greene.
There’s a new book available to help navigate the education of your PANDAS/PANS Kids. I have this book, and it’s chockful of good information. I’m homeschooling this year, but I wanted to have it on hand for when I talk to teachers at conferences. And it will be great if my son does end up back in school again in the future.
Here’s a brief description of the book taken from the Amazon Page: “The alarming symptoms of Pediatric Acute-onset Neuropsychiatric Syndrome – sudden tics, OCD, and regressions in both learning ability and behavior – can leave families stunned. Moreover, when educators and mental health professionals attempt to provide those families with desperately needed help, those providers may soon discover that tools useful for addressing those symptoms in the general population are ineffective for the youth who is battling PANS.
In this seminal work on PANS-related education, learning specialist, educator, and researcher Dr. Candelaria Greene PhD gives voice to the struggle that those extraordinary young people and families face. She offers a practical road map to assist those students through their unique academic challenges.”
How is this PANDAS/PANS Advocacy? Teaching educators about PANDAS/PANS is a GREAT way to advocate for your child now and future PANDAS/PANS kids the teachers may have later. You can help ensure that there is an understanding about PANDAS/PANS, while getting help for your own child. You can use this book to help explain the medical conditions
2. Order the book PANDAS and PANS in the School Setting by Patricia Rice Doran. This book will be available on August 18th. More good stuff about dealing with the issues PANDAS/PANS can bring to a child’s education. There are some parent stories included in this book…I wrote one of them. 🙂 (More on that next week when the book is released).
Here’s a short summary from the Amazon site: “PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep) and PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) occur when an abnormal immune response produces brain inflammation, leading to unusual psychological symptoms in children. Symptoms can include OCD, tics, ADHD, anxiety disorders, sensory issues and marked personality changes.
This practical handbook explains how educators can distinguish between these symptoms and pre-existing conditions, and offers strategies for supporting students with PANDAS and PANS in school settings. Contributions from experts provide educators with the understanding needed to be able to collaboratively identify PANDAS and PANS, and carry out effective interventions. As the rate of incidence of PANDAS and PANS increases, this book will be an essential resource for school staff in getting to grips with these complex disorders and overcoming the challenges they present.”
How is this PANDAS/PANS Advocacy? Since this is another book about PANDAS/PANS at School, see explanation above. 🙂 It’s so exciting to have TWO great resources for PANDAS/PANS and a child’s education. 🙂
3. Send a Thank You. Think of somebody that has gone above and beyond in helping support your family’s journey in PANDAS/PANS. This might be a doctor or a coach or a teacher or a family member or a friend. Okay. Now, get out a piece of paper or open your email app, and send that person a Thank You note. It doesn’t have to be long, but write it from the heart to tell them how much you appreciate all that they have done for you and your child. I can think of several people that I can send notes to this month.
How is this PANDAS/PANS Advocacy? Everybody likes to get a thank you. For folks that help out PANDAS/PANS children and families, it is nice when they are acknowledged. It only takes a few minutes to show somebody that you noticed their caring and compassion and appreciate it. It’s a way to find a sliver lining in PANDAS/PANS too. You’ll get to feel good too when you send that email or drop that letter in the mail. Showing your gratitude will go a long way.
Update on Last Month:
You can read the July GR8 ADVOC8 Post to see the 1, 2, 3 suggestions.
1. Join the Free Derya Facebook Page! I’m happy to report that Derya Demitrias was released from Bellevue Hospital on July 20th. She’s receiving appropriate Autoimmune Encephalitis treatment now and recovering from the medical seizure and lack of correct medicine. Her family is on a mission to help make sure this doesn’t happen to other children and young adults. You can still join the Free Derya Facebook Page if you haven’t and get updates on her condition and advocacy alerts.
2. Consider Going to the PANDAS/PANS Conference in October and Invite Your Doctor. I’m registered to attend the Conference in Washington DC. I plan to mail letters with a flyer about the Conference to my son’s non-PANDAS doctors. I also going to send information to other doctors that I know treat PANDAS/PANS for other Kentucky families. I can’t wait to meet many of you and see my other PANDAS/PANS Parent Pals. If you’ve never met another Parent going through what you’re going through, it is an awesome experience. You know how some people just finish your sentences and you completely vibe with them? Yeah…it’s like that. (You can find a printable flyer for the October Conference over on the home page of the PANDAS Network web site…just scroll down until you see it.)
3. Get a PANDAS/PANS Awareness Day Proclaimed in Your State. I applied for Kentucky’s proclamation and am still waiting on the approval. We still have two months. And even if we don’t get it, we’re doing what we’d do anyway. We’ve received it two years in a row…fingers crossed for a 3rd. If you haven’t applied yet, check with your Governor’s office on the process because there’s still time. PANDAS/PANS Awareness Day is October 9th.
There are your GR8 ADVOC8 ideas for August. It’s hard to believe that summer is almost over. We’re homeschooling for 7th grade, so we don’t have that stress of back-to-school like we’ve had the past three years. Ther’s still some stress, but it’s a different kind of stress. Sigh.
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Sarah is a PANDAS Mom to her awesome son, Jesse. She spends much of her time on Facebook, making to-do lists, and listening to music, especially Depeche Mode. She drinks a lot of coffee, likes a good red wine, and has been known to hide chocolate in her pantry. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!). PANDAS Sucks exists to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. Also see PANDAS Sucks on Facebook, Instagram, Twitter, and Pinterest.
Note: Please do not ask for doctor referrals or specific medical advice. This blog/web site is for info and support purposes only. I’m not a doctor.