PANDAS Left My Young Daughter With Intense Anxiety

Bedtime was 25 minutes ago, and yet, I hear small footsteps in the hallway and a little voice calling, Mom. This is the third time this week that my daughter is having trouble falling asleep, and when I ask her what’s wrong, she tells me she doesn’t know. Mom, I just have this worried feeling. So I lie with her, stroking her hair, kissing her forehead, and drying her tears. There is nothing worse as a parent to know your child is suffering and be unable to help them.

I know how to work through my anxiety as an adult, but as a child? Well, I never worked through things at her age. Hence all of the therapy and medication that now helps me function day-to-day. Just to throw it out there–there is absolutely not a damn thing wrong with medication or therapy. But if I can help it, I’d like to help her find other ways to manage her anxiety and worries.

The path to helping her manage her anxiety was an interesting one. It all started when she came to me upset and crying because she said she felt like she’d had an accident and wet herself. She was about 7 years old at this point, so sprinkle in a bit of shame on top of the anxiety that caused this all in the first place, and you have a recipe for disaster. We went to the bathroom only to discover that she hadn’t had an accident, yet still, she insisted she felt wet.

We tried different sizes, styles, and textures of underwear. We made sure to stop drinking a lot before bed and used the bathroom before getting tucked in. But still, she would come to my room in tears, feeling uncomfortable, and there was nothing I could do to soothe her. Of course, I did what every doctor tells you not to do and Googled it. By the end of the week, she wasn’t the only one being kept up by her anxiety, so I finally made an appointment with her pediatrician.

After a physical exam and a brutal line of questioning (that I was entirely unprepared for as a parent), sexual abuse and/or trauma were ruled out. Her pediatrician asked how she was feeling otherwise? She shared her difficulty falling asleep and worried feelings that made her feel upset quite often.

Her pediatrician talked with me about a condition known as PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders) which was something I’d never heard about before. It was a strange combination of symptoms, but it fit the bill. So we started treating it right away. The time it takes to clear up is unique to each child. Fortunately, she was just about back to herself within a few days. As it is with most illnesses, treating her physical health was simple. Antibiotics and steroids to assist with clearing up the underlying issue, but the more difficult part was working through the compulsive, anxiety-ridden behaviors that alerted me to this entire situation to begin with.

I have to admit, at first, I felt like an absolute failure. What did I do wrong? Was there something I should or shouldn’t have been doing to avoid her struggling the same way I did? I mean, after all, I live with anxiety and depression–was this my fault? Did she inherit this from me?

Of course, I hit up google again. While there is research that shows some mental illnesses can be inherited, your kid’s environment plays a role as well. Having an open conversation about mental health and mental illness in our home has been crucial to supporting my daughter. I let her see me take my medication, even though it’s hard for me to admit I’m not superwoman. But just like I had to work through accepting myself quirks and all, she will too.

Because my daughter’s symptoms came out of nowhere without any previous history of anxiety or mental illness-related symptoms, we chose to not support her with medication. Will it always be like this? Maybe, maybe not. But in the meantime, she uses a handful of other strategies to help her work through her anxiety instead of letting it overwhelm her. We partnered with her student counselor at school to make glitter jars, worry stones, and encourage her to write out her feelings.

Glitter jars give your child’s mind something else to focus on besides their anxious feelings. When they shake them up, watching the falling glitter until it’s settled gives them time to relax and let their feelings settle with the glitter. Worry stones are super easy to make and perfect for situations that require a little more discretion. I mean, sure, you could have your child bring a glitter bottle to church or school, but if you’re looking for something a bit more compact, worry stones do the trick. Just pick up some bakeable clay and have your child roll them into palm-sized balls. They use their thumb to smooth an indentation, so any time they’re feeling anxious, they can run their thumb or finger along with it. My daughter decided to coil her clay in a spiral, so when she carries it in her pocket, she’s able to trace the spiral and relax.

Sometimes your kids might not be into crafting. They might need some quiet time alone. If they aren’t in the mood to talk but need to work through their anxious feelings, suggest journaling or writing in a worry workbook. My daughter chose whatever journal she wanted. She decorated it and made it her own, but most importantly, she knows that it is her private space to express herself. No judgment, no breaking the lock to see what’s on her mind. As hard as it is to give her this space, it’s super important to allow her to work through her problems on her own. Both you and your child will be surprised at how resilient they can be when you let them.

Giving my daughter all of these tools with support, patience, and understanding has made a world of difference. When I grew up, my anxious feelings and tendencies were written off as “sad spells” or being too sensitive. In reality, according to the CDC, about 4.4 million kids suffer from anxiety. And those are just the ones who are diagnosed.

Ever since we started using these tools and having open conversations about mental health in our house, less and less often, I hear those little steps in the hallway. My daughter knows she can come to me anytime, with any struggle or worry she has. We’ll talk or work through it until she no longer feels overwhelmed. I don’t have this whole parenting-an-anxious-child-thing mastered, but I want her experience to be different than mine. What I do know for sure is that life with an anxious child can and will get better. You are not alone, and you’re doing an incredible job.