If you are on Social Media at all, then you have seen the multitudes of posts about PANS PANDAS Awareness Day today. Some posts have just the facts. Some posts are personal. NEPANS is made up of both professionals working and those who are parents to with children with PANS and so we try to cover both points of view. I myself am a Mom who wants to support families and help provide resources to professionals so little kids like my own are helped quickly and thoroughly. Below is a short view into what it was like when our son first had PANS symptoms. It is not the full story. But a glimpse into our life with PANS. After you are done, please share at least one of the resources on this website. Awareness really does spread one person at a time. It was one person that told me to look into PANDAS. You never know who you can help by sharing what you know. And last but not least, tomorrow might not officially be PANS Awareness Day but the sharing should not stop. Thank you for help. Thank you for reading.
Gabriella True, NEPANS Board President
My name is TJ, I am a freshman at in High School, and I have PANS. As a school project I have decided to raise awareness of PANDAS/PANS. Contacting my former teachers and their colleagues is only the beginning. As recently as last week, I was reminded how good it felt to talk to other kids like me, I decided to write a book geared towards kids 8-16 – sharing stories.
Most of my teachers were amazing and continue to still support me. However, there were a few teachers and nurses that were, well, mean. They were quick to label me “bad” when I was not “bad” before. My hope and the reason I am writing this is to educate the educators, reminding them that it isn’t always what it appears and sometimes there are reasons. PANDAS/PANS is a physical medical condition with emotional symptoms, (I say my brain has strep).
You are the front line to this, I ask you to help spread awareness. If you see a child – out of sorts… not themselves, save that child - consider that this may be a medical problem, not a behavioral problem. PANDAS/PANS is real – it is not an excuse. My auntie is a teacher and because of my story, in June, told a parent to check into this. Over the summer, this student was diagnosed and came back to school a new person – and will graduate this coming June with honors (he failed and stayed back in 9th grade).
Here is my story. Fifth grade (2009) started like all other years – excited to see my friends, celebrating my 10th birthday, anxious to hear my name to see who my teacher was, but more importantly, to see which friends were in my class. That was my biggest challenge, to be with my friends. There was a lot of craziness with H1N1 and I spent Halloween stuck sick in my house. A few months later, I went to zoo camp – I loved zoo camp – attending since I was 2. On Thursday, Mr. Chris had to call my mom I was under the table and wouldn’t come out. The next few months (well years) were scary. I spent so much time at doctors, hospitals, and programs. I could not attend school – I could not leave my house. I took a lot of different medicines for a lot of different things. I thought I was going insane. Nobody could tell me what was wrong with me, not even my mom. The school department and some teachers were very mean – I would but I was not able to go to school. What I wanted was something I was unable to do. I missed my friends. My mom had to home school me because no one understood what was going on. People push away what they don’t understand.
My Story - PANS Project
The month of August has always been a month of celebrations, trips, parties, and friends. August 2009 was no different – A trip to Camden Yards, a visit with the Orioles in their clubhouse, a meet and greet on the field with Red Sox, a game of wiffle ball with Orioles mascot on field in front of fans, a camping trip with friends, a deep sea fishing trip, an amazing party with friends, family, and new neighbors. I always had friends laughing and hanging without any anxiety. I was excited for school, alert, outgoing, and absolutely no behavior issues or anxiety.
September 2009 - I missed the first week of school because I had strep throat and an ear infection.
October 2009 – I had H1N1 and was quarantined – it was very scary.
November 2009 – I was required to get the H1N1 vaccine to return to school.
December 2009 – Symptoms started to appear. Gazed look, large pupils, blank stare, no expression, pale coloring, puffiness, sleepiness, anxiety.
February 2010 – After my first Grand Mal Seizure - The beginning of tests. EEG, CAT Scans, MRI, Spinal Tap.
No one can tell the stories of what it is like to live with PANS/PANDAS like those that have experienced it. The list of symptoms and descriptions of various treatment protocols does not bring the condition to life. The family or patient telling their individual story is what illuminates the day-to-day struggles and triumphs our children and families experience.
For families living with PANS/PANDAS, the aim of sharing these stories is to help you not feel so alone in your struggles, to let you know there is a family out there just like you, and ultimately to let you know that there is hope. For those who are just beginning to learn about this autoimmune disease, we hope you begin to understand PANS PANDAS with greater depth.
As more stories are contributed, a wider picture of what the condition is like will form including how many similarities there are and how many differences there are in its manifestation, in the path to diagnosis, in treatment options and in the outcomes. NEPANS invites you share your story with us today. Below are the guidelines for submitting a PANS PANDAS Family Story.
NEPANS Board Members & Special Guests
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