Yesterday PANS/PANDAS awareness day and if you’d asked me a few years ago what on earth that was, I wouldn’t have been able to tell you. I had never heard of the disease.
And ironically, in our small city, tonight there is a huge fundraiser event for PANS/PANDAS and I’m unable to go because our ‘panda’ is in what I call a flare, or an episode.
I’ve learned a lot, more than I would have liked, about the chronic illness we have been dealing with for our son for nearly 4 years would. I would learn it was in fact PANDAS or pediatric autoimmune neuropsychiatric disorders associated with streptococcus.
So in easier to understand 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.
Our son’s story with PANDAS is really not my story to tell. It’s his story to tell. One day, when he understands it more deeply. One day, when he can wrap his head around it all. And then he can choose how and when and with whom he shares it.
MY story with PANDAS however is about stepping head first into the role of advocate for my child. It’s about awareness and understanding and even availability. It was trusting my gut instincts, spending hours researching on WebMd and google, and spending time and money on the wild ride of a medical roller coaster.
Advocacy started as a part time job for me when we found ourselves in this situation. It was about asking questions, digging deeper and never giving up.
And after the past 4 years, I can say without a doubt there’s nothing more important I could’ve done with my time!
Although sometimes exhausting and frustrating beyond belief, there is nothing I’d take back or second guess when it came to this pursuit and my advocacy.
See PANDAS isn’t always considered a “real” diagnosis in the medical field, even though it has been around for 30 years and advocated for by numerous pioneering professionals. But it’s one of these 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. Or come and go …
Shoulder shrugging, eyes blinking, humming, throat-clearing, staring off.
It can look like sleep disturbances, 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, or huge regressions in mathematics. So much so that it’s almost like two different people are completing the work.
But then again, it really is 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 continue to advocate and try to find a PANDAS aware doctor…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 and to find those communities and lean into them.
I found our son’s doctor and this avenue because of other parents sharing their stories. And then I found answers and support in the online spaces where I could connect with others who were going through this rollercoaster themselves.
Because PANDAS (and PANS) like so many illnesses, is often suffered in silence.
It’s confusing. It’s doctors’ scratching their heads and referring you to specialists. And then therapists. It’s misdiagnoses. It’s questions about your parenting style. 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 weighed heavily on our family and especially our little boy. It masked his personality and quieted his spirit. We wondered and worried and questioned. And then one day, after years of searching, we got some answers and a direction to head in. And while healing with PANDAS is possible, it’s like climbing through mountains. It’s peaks and valleys and a lot of uphill work just to feel like you have to climb back down and do it all over again.
But you do not have to go this alone. Because one day, you will break your head through the clouds and have the capacity to share your story with a friend or even the world.
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, whocxxd
Accurately diagnosing and treating this disease while working with a practioner who is PANDAS aware, can alter the course of a child’s life and an entire family’s existence.
There is hope. The road will be hard. There will be tears and celebrations. Big and small wins. You’ll see glimpses of the child you know his there under the disease. The one who continues to steal your heart like he did the first time you laid eyes on him. PANDAS will not define his life. And you will look back and say “it was all worth it.”
For more info/support check out https://www.pandaspansontario.org/