I always bragged about my daughter, my third child, being my “angel baby”. Marin was the easiest and most content. She rarely cried and never threw a fit; she rolled with the punches, ate any and everything, and I remember thinking how we struck gold with her. She was a sweet, girlie little thing with a propensity for purses, nail polish, and lipstick. She loved allll the clothes and was incredibly social and BEYOND easy. That was until she wasn’t.
This is our journey thus far with PANDAS. Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (it’s a mouthful, I know). Not the cute, cuddly creatures your little one might be used to coloring or seeing in cartoons. It’s a life-changing, mind-numbing, hidden disease that has taken an immeasurable toll on many children and families, including our own.
The Beginning of PANDAS
The change was drastic. It all began when Marin was two and a half, when parents expect things to get harder, because I can’t tell a lie – toddlerhood is HARD. We expected the tantrums, bigger emotions, exertion of her newfound will against ours, and battles over food. Or at least I expected these things after my experience with her two older brothers! But with Marin, things were different and beyond hard. It felt like the earth shifted right underneath us.
In hindsight, we realized years later that the changes I’ll describe came on the heels of two strep throat infections. How were we to know this caused a flurry for her immune system, which ended up triggering this awful disorder? Well, we didn’t. And it took us two and a half years of watching our once sweet and loveable toddler become a shell of who she really was before we’d find the diagnosis that helped fit all the pieces together.
Seemingly overnight, Marin’s personality changed.
She became incredibly controlling, rigid, impulsive, oppositional, and immovable at times. Everything had to be juuuust right or it would have to be done over and over again until it was. We’d never know what could set her off into a rage, where no amount of calm or reason could bring her out of it.
Tantrum isn’t a big enough word to describe these episodes. She would punch, kick, self-injure, throw things, break things, scratch, pull out her own hair or mine, and many times we were forced to restrain her.
Too often to count there were moments where I was in tears, wondering how we could continue like this and what her future would look like.
This went on for years.
She began to be overwhelmingly sensitive to all things “sensory”. Every ride in her car seat was like a torture chamber – the feeling of the seatbelt against her body drove her mad. And when I say EVERY ride in her car seat, for three years, that is no exaggeration. EVERY. SINGLE. ONE.
This extended to the way any item felt to or against her. The way her pillow might feel against her head, or a blanket that was wrinkled underneath her, or a spoon in her hand, or my hand in hers – which, if it was not “just right”, would drive her crazy. Clothing and getting dressed became an hour or two long nightmare each day.
PANDAS is known for being an up-and-down kind of beast. It comes on abruptly and no two cases look or respond exactly the same. Just when we’d have a good couple weeks, believing we were “getting somewhere”, *things* would hit the fan yet again.
I could go on and on, talking about Marin’s other symptoms of ADHD, night terrors, lagging executive functioning skills, sleep disturbances and hallucinations, and separation anxiety, but you get the idea. This disease has affected our entire family, and it hasn’t been a pretty or easy journey.
Ultimately it was a fellow mom friend who tipped me off to the idea that PANDAS could be the culprit of our challenges. Marin began treatment with medication to help with underlying infections and inflammation, which helped immediately and drastically – giving us back our daughter for the first time in a long time!
We’ve had our ups and downs, slides into and out of “remission”, and like many parents in this boat, we’re trying our best. I recognize that this journey while having been beyond difficult, has encompassed a lot of growth and healing.
Learning and Growth
You see, most of us have been fooled into thinking that our child’s behavior is always willful and intentional. That if our child disobeys us or doesn’t cooperate, we just need to figure out a consequence, or put in the right reward system, and with enough love and attention they’ll fall in line. When nothing works, our confidence as parents can diminish quickly. However, not often accounted for in traditional parenting circles, is the fact that our child’s brain structure impacts every behavior!
In a disorder like PANDAS, the brain isn’t operating as it typically would or should. Instead, an infection (such as strep, influenza, walking pneumonia, or mono) triggers a misdirected immune response, and the antibodies produced mistakenly cause inflammation and attack a part of the brain called the Basal Ganglia.
Marin’s behavior wasn’t her fault, just as much as it wasn’t my fault.
I’ve had to shift my parenting paradigm. I’ve had to do less reacting to and judging of Marin’s behavior, and lean into more understanding and exploring. After years of overwhelming concern, stress, anxiety, and sadness over this disorder, these changes to my own lens have helped me feel so much more compassion toward her and have helped in my own healing.
As parents, we tend to have a lot of expectations. Expectations for how our kids will behave. Learn. Get along with peers. Obey. Even what they’ll dress like, for goodness sake! In this process, I’ve learned to let go of all of that and love my daughter despite my unmet expectations.
Despite the difficult days, they are becoming more and more a thing of the past. I cherish the days we get to see Marin for who she really is, without PANDAS. I see her strength, warmth, kindness, compassion, and outrageous sense of humor. I keep believing, hoping, and praying for her – that this disorder will no longer be lurking around the corner. And one day, a PANDA will just be a panda – and not an acronym to describe what has caused our family so much heartache.
If your child has had profound changes in his daily behavior and any of the symptoms described above began for your child abruptly after an infection (and if your gut is telling you that something isn’t right), I encourage you to push for answers and read more on pandasnetwork.org/medical-information. If I can be a resource in any way, I can be reached at [email protected].
Robin is a native of NW Indiana, married to her fun-loving husband Joel of 17 years. She adores her spicy combination of children – Mason (10), Reid (9), and Marin (7) who keep her busy with their activities, entertained by their antics, and warmed by their cuddles. Before settling in Iowa 9 years ago, she and Joel enjoyed living on both the East and West coasts where her love for adventure, travel, and interesting food was solidified. Easing out of stay-at-home-mom life, she works part-time at Family Legacy Counseling managing. In her free time, Robin can be found trying to make delicious food, camping with their family friends, or FaceTiming with her identical twin sister.