PANDAS Awareness Day… Unveiling The Silent Beast

Today is PANS/PANDAS Awareness Day. And if you want to know the truth, one year ago today, I’d never even heard of this disease.

Yet…it was living in my home. Causing chaos, confusion and yes, even bouts of hopelessness. 

PANDAS, the acronym, stands for pediatric autoimmune neuropsychiatric disorders associated with streptococcus.

So in easier-to-swallow words, it’s an autoimmune disease that flares up when the child contracts strep. The immune system incorrectly begins attacking a part of the brain causing all kinds of symptoms that look different in each and every child. Symptoms including OCD, anxiety, tics, ADHD-like behavior, and more. PANS is a similar autoimmune syndrome but reacting to an infection other than strep…a virus, lyme disease, mycoplasma…or really anything that can inflame and activate the immune system.

My child’s story with PANDAS is really his story to tell one day. One day, when he understands it more deeply. One day, when I explain it all to him. And he can choose how and when and with whom he shares it. 

But MY story with PANDAS is about stepping into the role of advocate for my child. It’s about awareness and also availability. It was trusting my gut, spending hours researching on PubMed and spending our vacation fund on medical expenses. Advocacy is about asking questions, digging deeper and never giving up.

And after the past two years, I’d say without a doubt there’s nothing more important I’ve done with my time.

Nothing I’d take back or withhold from my pursuit and my advocacy. This child of mine will never, ever say that we don’t love him with our whole hearts. 

See PANDAS isn’t always considered a “real” diagnosis in the medical field, (although I have not personally experienced that hurdle). But it’s one of these new, confusing, hard-to-define, no-two-people-look-the-same kind of diagnoses. If you’ve met one child with PANDAS, well, you’ve seen one manifestation of the disease. And you’ve gotten one days’ worth of knowledge about it. 

PANDAS can look like an anxious child unwilling to leave the house or go to school…ever.

It can look like vocal or motor tics that never, ever stop. Ever.

Shoulder shrugging, eyes blinking, humming, throat-clearing. They can’t stop it even when you ask them.

It can look like impulsivity, fits of rage, outbursts of emotions, bedwetting, hair-pulling, skin-biting, and memory loss.

It can be hyperactivity and literal exhaustion.

It can be obsessions that disrupt life.

Or it can be only a few of those things. Or all of them.

It can be mild or it can be severe.

It can be drastic changes in handwriting, so much that it’s like two different people wrote them.

But then again, it’s like having two different children inside one body.

Because some days, these symptoms are completely absent. And other days, they’re raging. 

As a PANDAS mom, I can’t stress enough how important it is to find a PANDAS-friendly medical provider…one who believes you. And who will listen and ask all of the questions. And secondly, I can’t stress the importance that you know just how many people are living this nightmare with you.

Because PANDAS (and PANS) is a silent beast.

It’s confusion. It’s doctors’ scratching their heads and referring you to specialists. And then therapists. It’s misdiagnoses. It’s assumptions about your parenting style. It’s people keeping their distance. It’s feeling misunderstood. It’s feeling alone and isolated. It’s wondering if maybe it’s all in your head. It’s an up-and-down roller coaster with good days that make you forget about the bad ones.  And bad days that make you question if there were ever good ones in the first place. 

For years, PANDAS kept us confused. It stole our boy from us. It masked his personality and quieted his spirit. We wondered and worried and prayed and questioned. And then one day, we got the answer. And while healing with PANDAS is possible, it’s a stair-step climb. It’s not a fast ascent. And sometimes it feels like somebody pushes you down a couple of steps. 

So do not go at this alone. Because one day, you will break your head through the clouds and have the capacity to share your story with a friend.

And that friend will know someone else who has a kid with this same disease that she only remembered because of the funny name. And then you’ll find that mom on social media, and you’ll have a mutual out-of-state friend, whose daughter also has PANDAS. And then a childhood friend will message you. And it will come up in conversations with other moms who are confused and trying to figure out what’s going on with their kid, who should have grown out of some of their behaviors by now, but they haven’t. And then suddenly, you’ll look up and realize that you weren’t the only one. You weren’t the only family. 

Mark my words, accurately diagnosing and treating this disease will alter the course of a child’s life and an entire family’s existence.

There is healing and hope. The road will be hard. It will not come without cost. There will be tears and celebrations. Big and small. You’ll begin to see glimpses of the child God created. The one who grew inside of your body and who stole your heart when you laid eyes on him. PANDAS will not define his life. And you will look back and say “it was all worth it.”

**Forever thankful to our healthcare provider, Jana Roso at Neuronutrition Associates, our family and friends, this facebook group, and countless others who have walked alongside us, encouraged us to not lose heart and to keep fighting.