Rare Disease Awareness Alert :: Have You Heard of PANDAS??


A year ago, our 7-year old daughter Lily woke up with what we assumed was a mild stomach bug.

But once she threw up, she was in an odd panic.

What if I keep throwing up? Will I always be like this? Am I going to die?

“Die? No, you just threw up. You’re going to be fine. Why in the world would you think about dying?” I tried my best to reassure her, but in the back of my mind alarm bells starting ringing. What odd questions for a 7-year old to ask.

Two days later when it was time to go back to school, she screamed and refused to go. Surely it’s because she was at home snuggling with mommy watching TV for 2 days. Right?!

Something seemed off that week. Off enough, and different enough, that I wrote the dates down with some notes in my calendar. My gut told me we’d need to know the date this began…whatever “this” turned out to be.

Over the next several weeks she complained of daily stomach pain. She was hesitant to leave the house. She was scared of someone throwing up. She was terrified to eat in a restaurant. And my girl who loved school, started refusing to go. One afternoon at her older sister’s gymnastics meet, she had a panic attack. I was terrified.

The next morning we called our pediatrician and she recommended some blood work which we scheduled for the following day. However, that morning she woke up with a fever. We took her in and she tested positive for strep. Our pediatrician looked at us and said she would work with us to rule out everything but to keep PANDAS in the back of our minds.

My first thought – what is PANDAS? My second thought –what do we do now?

Pediatric Autoimmune Neuropsychiatric Disorder After Strep. PANDAS.

Most people have never heard of it. Many pediatricians have no idea how to identify it or treat it. Children are often misdiagnosed and prescribed antidepressants or anti-anxiety medications which in a lot of cases, only temporarily masks the real problem.

PANDAS is not rare. It’s rarely diagnosed.

We were lucky. So lucky. We had no idea how lucky we were that our pediatrician said those words to us that day in her office so early on in our journey.

Over the next several weeks we endured frequent visits to the pediatrician, therapists, GI specialists, neurologists and countless procedures, including blood work, lab tests, neuro exams, a colonoscopy and an endoscopy…which confirmed her diagnosis. On my 18th wedding anniversary, April 17, 2017, I sat in the doctor’s office looking at my sweet daughter on the exam table, when he confirmed what we feared.

Our daughter has PANDAS.

My mind started to spin. I had googled all about it and seen all kinds of stories from simple and successful, to traumatic and life-altering as we awaited an official diagnosis.

So there we were. My sweet girl, plagued by OCD tendencies, random sensory issues, irrational fears and phobias, constant stomach pain, debilitating anxiety and rage and an intense need to always be with me.

Unfortunately, these kids just can’t control these things due to the inflammation in their brain. Some young children even become suicidal. And it’s not just the child who suffers. The entire family suffers. Our family suffered. PANDAS drained me. My world was dark. I was broken.

Lily is our baby. The youngest of three pretty great kids. She’s smart. So smart. With older kids around, she knows what’s going on. You can’t get much passed that girl. She’s a wonderful reader and a talented writer. She’s always been an excellent student and has always loved school. She’s a beautiful dancer and loves playing the piano. She’s compassionate. That girl has a heart of gold. She’s sweet and kind and a good friend to so many. She’s strong and courageous. She’s our little free spirit.

And she was hurting.

You see, she didn’t want to be scared of eating in a restaurant.

She didn’t want to be constantly worrying that someone around her would throw up. She didn’t want to say yes to birthday parties, only to realize when it’s time to go, she was too scared to leave me. She didn’t want to say mean things to us. She didn’t want to be terrified of school. She didn’t want to be filled with anger and rage. She didn’t want to make us so sad.

But she’s a fighter. She’s one brave little girl. These kids endure more than we could ever imagine.

And oh the power of a parent in pain. As quoted in the PANDAS documentary, My Kid Is Not Crazy,

Educated parents armed with the internet, worried and scared – they do better research than the CIA.

Yes. Yes, we do. After researching on our own, we sought help from a neurologist in Georgetown who specializes in PANDAS. We started her treatment with antibiotics and supplements and made some diet and lifestyle changes to help her heal. We also opted to remove her tonsils and adenoids last summer, even as doctors assured us it wasn’t necessary.

And over time, she slowly started to heal.

PANDAS sucks.

It really does.

I hate what it did to my girl; what it did to our family.

At times, what it still does to my girl.

Like so many autoimmune disorders PANDAS can come and go and Lily has had a few minor flares since her treatment plan and path to recovery began.

PANDAS can destroy you. It can destroy your child. It can destroy your family if you let it. Yes…it’s absolutely that strong.

We are so thankful that it didn’t destroy us.

Today, Lily is doing well.

Really well. All in all, she’s 95% back to her sweet, sassy, free-spirited self. She wakes up happy, heads off to school happy and comes home happy. She plays and dances and laughs…just like 8-year olds should. We took our good health for granted until this crazy and complicated diagnosis. Today, we savor every sweet moment with our loved ones, especially our precious PANDA.

I will forever be grateful to our pediatrician. She started us on the path to an accurate diagnosis and prompt treatment. I’ve spoken to so many parents whose path has not been as straightforward. Today, HOPE fills us that we can continue to raise awareness to help our children heal.

PANDAS is not fun but some good things come out of it. You can make new friends that have PANDAS and you can talk to them. And your family comes closer together. And on good days, you celebrate. – Lily, age 8


For more information, please visit PRAI.