The Beginning

Hi! My name is Bennett, and I was 11 years old when I was diagnosed with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) in 2020.

Before that, I saw countless doctors, therapists, and psychologists. Nothing helped, I just kept getting worse. I had a long list of diagnoses, most of which turned out to be wrong. My life felt like it was falling apart.

Trying Everything

I spent time in psychiatric hospitals, therapeutic schools, and treatment centers. No matter what we tried, things didn’t improve. I felt hopeless and angry.

But my mom didn’t give up.

She kept researching and eventually came across something called PANDAS. When she explained it to me, a lot of the symptoms sounded familiar. But after years of being told so many different things, I was skeptical.

A Turning Point

Then everything changed.

I was being evaluated by a PANDAS specialist, going through a bunch of tests and assessments. As part of the testing protocol, he put me on a short term steroid trial to see how my body would respond.

After just three days, everything shifted. The inflammation in my brain went down, and I felt like a completely different person, like myself again.

That’s when we finally knew. We had found the right diagnosis.

Living with PANDAS

Getting diagnosed was a big step, but it didn’t fix everything. PANDAS is unpredictable, with lots of ups and downs. That’s just part of it.

When someone with PANDAS gets sick, it can trigger a flare in their immune system. That can lead to symptoms like:

• OCD

• Anxiety

• Sleep problems

• Depression

• Tics

• Aggression

• Learning issues

• Loss of motor skills

Symptoms are different for everyone, and even one person’s symptoms can change from flare to flare. That’s part of what makes diagnosis so hard.

My Treatment Journey

Since being diagnosed, I’ve gone through a lot of different treatments. Some traditional, some more natural. I’ve taken long term antibiotics, had my tonsils and adenoids removed, and received IVIG infusion therapy to help reset my immune system. I’ve also done homeopathic and other natural treatments that have helped support my body in different ways.

It hasn’t been easy. Some treatments were physically tough. Others took a long time to show results. There were moments when I wondered if anything would ever work.

Healing with PANDAS is a process. There are still ups and downs, and sometimes I need to be reminded of how far I’ve actually come. But over time, with the right mix of treatments and support, things really have started to improve.

Why I Started This Project

I started this project because I know how hard it is to live with PANDAS, and how confusing and overwhelming it can be, especially before getting the right diagnosis. I was lucky to have support and resources throughout my journey, but I know that not everyone does.

Through this project, I hope to raise awareness, share resources, and offer support to other patients and families dealing with PANDAS. Living with PANDAS is incredibly hard, but you’re not alone.