PANDAS Left My Young Daughter Struggling with Severe Anxiety

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It’s 25 minutes past bedtime, and I hear soft footsteps in the hallway, followed by my daughter’s timid voice calling out, “Mom.” This is the third time this week she’s struggled to fall asleep, and when I ask her what’s bothering her, she replies she doesn’t know. “I just have this worried feeling,” she says. I lie beside her, gently stroking her hair and wiping away her tears. As a parent, it’s heart-wrenching to see your child in distress and feel powerless to alleviate it.

I’ve learned to manage my own anxiety as an adult, but my childhood didn’t come with those coping mechanisms. That’s what led me to therapy and medication to function day-to-day. While I believe there’s absolutely nothing wrong with seeking help through medication or therapy, I want to guide my daughter towards alternative methods for managing her anxiety.

Our journey to help her cope with her anxiety took an unexpected turn. One evening, she came to me in tears, convinced she had wet herself. At 7 years old, this incident was compounded by shame and anxiety, creating a perfect storm. We checked, and thankfully, there was no accident. But she remained adamant that she felt wet.

We tried various underwear styles and textures, limited her drinks before bed, and ensured she used the bathroom before bedtime. Yet, she continued to come to me, distressed and uncomfortable, and I felt utterly helpless. In desperation, I turned to Google for answers. By the end of the week, I found myself just as sleepless as she was, prompting me to schedule an appointment with her pediatrician.

After a thorough examination and a series of questions I was unprepared for, the doctor ruled out any sexual abuse or trauma. Instead, she inquired about how my daughter was feeling overall. My daughter opened up about her struggles with falling asleep and the anxious feelings that plagued her.

The pediatrician mentioned a condition called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders), which I had never heard of before. The combination of symptoms matched perfectly, so we began treatment immediately. Recovery time varies for each child, but she was back to her old self in just a few days. While addressing her physical health with antibiotics and steroids was straightforward, the real challenge lay in tackling the compulsive and anxiety-driven behaviors that had initially raised my concerns.

Initially, I felt like a failure. What had I done wrong? Was there something I could have done to prevent her struggles? Living with anxiety and depression myself, I worried if I had somehow passed this on to her.

Research shows that while some mental illnesses can be hereditary, a child’s environment plays a significant role too. Open discussions about mental health in our home have become essential in supporting my daughter. I allow her to see me take my medication, even when admitting my imperfections feels challenging. Just as I had to embrace my own quirks, she is learning to do the same.

Since her symptoms emerged suddenly, without any prior signs of anxiety, we opted not to pursue medication for her. Will this always be the case? Only time will tell. Meanwhile, she employs various strategies to manage her anxiety. We collaborated with her school counselor to create glitter jars, worry stones, and encourage her to express her feelings through writing.

Glitter jars provide a visual distraction from anxious thoughts. Shaking them up and watching the glitter settle allows her mind to relax. Worry stones are easy to make and discreet, perfect for occasions where she may need to manage her anxiety quietly. Using bakeable clay, she crafted her own palm-sized stone, which she can trace when feeling overwhelmed.

Sometimes, children may need quiet time alone. If talking isn’t appealing, journaling or using a worry workbook can be beneficial. My daughter chose a journal she decorated, creating a personal space for her thoughts—free from judgment and prying eyes. As tough as it is to give her this space, it’s crucial for her to work through her feelings independently. Both of us are often amazed at her resilience when given the chance.

Equipping my daughter with these tools, along with my support, patience, and understanding, has dramatically improved her situation. In my own childhood, my anxiety was dismissed as mere sensitivity. However, according to the CDC, nearly 4.4 million children are affected by anxiety, and those figures only account for diagnosed cases.

Since implementing these coping strategies and fostering open conversations about mental health, I’ve noticed fewer nighttime visits from my daughter. She knows she can approach me with any worries or struggles. While I may not have mastered parenting an anxious child, I aim to ensure her experience differs from mine. Life with an anxious child can improve, and remember, you are not alone in this journey—you’re doing an incredible job.

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Summary:

This article shares a mother’s experience in helping her daughter cope with severe anxiety related to PANDAS. It discusses the challenges faced, the importance of communication around mental health, and the various tools and strategies used to support her child’s emotional well-being. The narrative emphasizes resilience, the need for understanding, and the importance of fostering a supportive environment for children dealing with anxiety.