"I started to carry on with my life until one morning I woke up a completely different person..." Addie's story with PANDAS/PANS

Hi, my name is Addie Carroll and this is my story. 

At the young age of 10, I was living a normal life as any 4th grader would. I was always out going, not shy and was always able to be myself. I enjoyed making new friends at my new elementary school I had recently transferred to.

Around the first quarter of my 4th grade year, I had a normal strep infection. Everyone gets them so I started to carry on with my life until I woke up a completely different person one morning. A flip had switched in me, making me incredibly anxious, but why? What changed so suddenly? And why was I feeling like this? I was waking up in constant stress and anxiety towards school. I would get up in a panic and breakdown even thinking about going to school. I developed severe separation anxiety from my parents and a noticeable decrease in my personality.

At this time we didn’t have answers but, we had a family friend whose daughter experienced the same as I was. My parents reached out to them and they were then informed about an autoimmune disease called PANS/PANDAS. My mom and dad then started looking into it and decided it would be a good thing to see if I could get diagnosed in evaluated for it. They then took me to my regular Doctor who told us that PANS/PANDAS was not real and that I did not have it. 

My anxiety continued to get worse. I was missing so much school and we didn’t know what to do about it. As I progressed through elementary school & middle school I was dealing with the same issue along with a derealization episode that would sometimes last for weeks at a time.

Sophomore year of High School came and I began developing anxiety again. I started getting so anxious I would hide in the stalls at school and skip class. Eventually, I went online. It was all going great until my junior year, September 24th.  

I was driving to work and was suddenly having one of the worst panic attacks I’ve had. I called my mom immediately and let her know what was happening. She drove in and found me in the bathroom hysterical. I experience derealization, heart palpitations and it feels like I’m dying. I had to close the shop and go home. 

I was experiencing severe OCD, intrusive thoughts and I was incredibly depressed.   

Me and my family then knew I had PANDAS. To me, it was infuriating how someone who we trusted, a doctor too, could just tell me that this disease was not real. How I could have been treated YEARS ago and avoided all of this. I will never understand why he couldn’t have said, “ I don’t believe in PANS/PANDAS but here are some people who might be able to help you.” It’s that simple. 

The months of September- November were the worst. I was unable to go out in public. I was then tested back in September and turns out, I still had the same strep from 7 YEARS AGO. 

So what is PANDAS and why does this have anything to do with a strep infection?

PANDAS stands for “Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections”

Basically, it happens when your body fights off a strep infection (like strep throat), but instead of only attacking the bacteria, your immune system accidentally affects your brain too.

For me, that means I can have sudden changes in how I feel or act. Things like anxiety, OCD symptoms, mood swings, or even trouble focusing can show up really quickly, almost overnight. Following the blood test I did for strep, it also came back that I was fighting strep, mono, Bartonella, mold toxicity and even walking pneumonia. All asymptomatic.

I became bed ridden. I couldn’t get out of bed. I barely had enough energy and motivation to get up and shower. I spent my days in my bed. I had to have my mom sleep in my room with me for over 3 months. I would have constant panic attacks and was giving up hope. During this process my mom and dad were constantly doing research on treatments. They found one called IVIG

Getting insurance for IVIG took months.During this time I was at the climax of my depression. I began having suicidal thoughts. I felt as if it was the only way to escape the hell I was living in. All sharp objects were hidden for my safety. 

One day I was called down to the living room and got the news that I had been accepted for IVIG. I remember crying with my family and being so grateful, I was finally seeing a light beyond the darkness. 

Flash forward to my first round of IVIG. The nurse came around 9-10 and got me set up. IVIG is spread through 8-10 hours a day for two days straight every 4 weeks. After the first round of IVIG I had no side effects!

Going to prom was the first big step I was able to take since all of this. 

Unfortunately, with how bad my side effects eventually became, we stopped doing IVIG. I was completely torn and lost again.

When I turned 18 I was introduced to EBOO therapy. You can think of it like a temporary “outside-the-body cleaning system” for your blood. After that I really started seeing some results. I felt better, I could finally look in a mirror and start to see myself again. I was going out more, able to stay the night at friends and enjoy the good days. 

Suddenly I was experiencing rage, but nothing like I had ever experienced. My first episode was caused from the anger and exhaustion caused by pandas. Not being able to do certain things and feeling trapped in my body. I threw everything single thing I could find in arms length and completely threw and broke them on the floor while screaming and crying.

While back at home I received a text that made me extremely distraught and upset. During that conversation I was having I began having another manic episode due to all the emotions I was feeling at once. I started screaming and banging my fist onto my floor as hard as I could over and over again. I could hear my mom just start to cry. My mom once again grabbed me and would not let me go.

But the most important part is the present, how I’m doing now.

Recently, I started driving again, I’m finding support through amazing friends, I’ve been on trips away from my family and home, I’ve had more and more sleepovers,I’m still getting the help I need. And I’m slowly but surely getting better. The girl who I saw in the mirror a year ago is a complete stranger to me now. I began sharing my story and I’ve been able to help SO many people with doing so. I’m finishing up my senior year of high school and on track to graduate. I’m so thankful that I made it this far when I didn’t think I would even be here today. 

The most important thing I want this to do for people would be to help them. Learn to speak up an advocate for themselves, cause I know I was not able to at such a young age. I was not familiar with any autoimmune disease, especially the one I was struggling with silently. I wish I knew what I know now and hope that whoever reads this knows that there is hope, and that they are worthy of living.

There is always hope even when you feel the most alone. 

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Clinical definitions will never capture the full weight of living with these conditions.

But we can.

Chronically Me.