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.
In November 2012 I was diagnosed with PANS. I was treated with an antibiotic and steroids while being weaned off (the wrong) 27 different daily pills. I was scared, sad, and worried that this wouldn’t work because some doctors said it would not. My mom pushed and told me this is the only thing that makes sense we have to try it. By February I started to go to school part time (everyday – the teachers and principal were so supportive) and things started to get better. In April I was able to pitched again and play a whole game of baseball without issues or concerns. In June, I attended my 8th grade social and loved hanging with my friends. In August I celebrated my 14th birthday (I haven’t celebrated a birthday since my 10th birthday). This September I started school full time in High School. Volunteer with special needs. Recently, I went to the Vets homecoming with friends and had an amazing time. I couldn’t eat Thanksgiving dinner last year I am looking forward to an amazing meal with my family this year.
People ask me why I want to raise awareness. I tell them I lost four years of my life – four years is a long time when you’re 14. My mom fought hard for me until there were answers. If I can help one person, parent, or family not go thru what we went thru – it would be worth it. It was hell!!!
Here are some links to learn more about PANDAS/PANS and the Pandas Network has an educator package I can send to you if you are interested.
I was one of the lucky ones - unfortunately, for some it can be a longer process finding the right treatment. This is a complicated medical condition. Until the right treatment is found the children infected will remain sick and in need of support, empathy, and love.
In closing, thank you for your time, consideration, and compassion.
NEPANS Board Members & Special Guests
Many Blog entries are long enough to go onto a 2nd page. Please click Read More in the bottom right of some blog entries!