When you have treated as many children as we have with PANDAS (pediatric autoimmune neuropsychiatric disorder associated with strep infection) and PANS (pediatric acute-onset neuropsychiatric syndrome), you start to recognize patterns in these cases. One of the most universal patterns we see is how these diseases traumatize other family members. A central theme that almost always shows up is GUILT. This is particularly so with moms of these children. Recently I was seeing a PANDAS patient in the office and addressed this subject as I always do with the child’s mom. I also told her I was actually planning to write a blog about the guilt many of these moms feel and wanted to call it “Mom, it’s not your fault”. This must have struck a chord and a few days later this article below appeared in my inbox. The patient’s mom wrote it because she wanted me to share it wherever I could to encourage other moms going through this same situation. It was so profoundly on point and beautiful that I feel compelled to share it here:
Guilt. It is so real.
“From the minute my daughter became ill, I felt it. You see, I’m like the watchman of my family. No one gets sick. Not on my watch. I’m a health coach. We eat organic food. We clean with vinegar. We use non-toxic products. We filter our water. We sanitize our air. We exercise. We meditate. We pray. We try our best to stay on top!
Only it happened anyway.
August 14th was a day that would turn our world upside down. I got a call from the school nurse. My 12 year-old daughter was sick, and needed to come home. It was her first day of school. Her hair was curled, her outfit just right. She practically skipped off to school in the morning with her friend. But PANS/ PANDAS is sneaky like that. It would soon lead her into a downward spiral so quickly it would make your head spin. I immediately started scanning her life. Was it because I got too sick on the prenatal vitamins so I didn’t take them and did I eat too many rice crispy treats when I was pregnant? Or maybe it was because I was so sick during childbirth and couldn’t even hold her for 5 hours after delivery…gosh she must have felt so abandoned. And how could I let the hospital do a spinal tap on her when she was only 11 weeks old? Did that affect her brain? How many times was she on antibiotics? Did I feed her correctly? Is it because I supported her being a vegetarian? When did she have strep throat, I can’t even remember! How many signs did I miss? Why didn’t I notice this was happening earlier? What if’s flew faster through my brain than the speed of light. It is the epitome of mom guilt. It is so real. And it is devastating.
PANS / PANDAS seems impossible to understand and it likes devastation. It thrives on it. And because it is not well understood, especially in the conventional medical community, as a mom, I felt helpless and reached for answers in every direction. I relied on other moms who have been there. I scanned Facebook groups. I researched. I listened to podcasts and took notes. I became a better researcher than an FBI agent. And I tried to drive this massive ship with such limited information and expertise. You see, P/P doesn’t fit into mental illness, not exactly, although it’s a component. It’s an autoimmune response, but it isn’t treated it like an autoimmune disease either. It is unique. And it requires a very experienced doctor to navigate. Although I tried with her integrative pediatrician, we fell short, and I fell to my knees in stress and anguish as my daughter continued to slip away.
After failed calls to multiple doctors who hardly knew what I was talking about, I was finally led to Vine Healthcare. And what a blessing this has been. From the first call, I knew they just “got it.” Veronica at the front desk was beyond compassionate and knowledgeable. She knew all about PANS/PANDAS, and made me feel like I finally had a place to turn. Getting my daughter there was no easy feat as she is homebound with debilitating symptoms. But we rented an RV and through a true act from God, we got her there.
Dr. Scott was just a breath of fresh air. Compassionate. Empathetic. Knowledgeable. He started the appointment by telling me, “This is not your fault. This is NOT your fault.” And all that scanning and analyzing, all of the missteps I thought I made, they went away. He is right. This isn’t anyone’s fault. It just happens. And if I am at fault for anything, it’s for being an amazing, creative, strong mother who will stop at nothing until my baby is better and back to her life!
And for my daughter, he captured her trust. He met her where she was at. He is resourceful. He is creative. He rolls with it when we have to find alternative solutions. He is the captain we needed all along. We now have hope again. I have relief. I didn’t like driving that ship. It was scary in those unchartered waters and I felt so alone and isolated. I know it’s still going to be a bumpy ride, but now I’m out of the driver’s seat with a treatment plan, and our family is able to relax into the healing process. And all that guilt…it’s gone. We are on the road to recovery, with a captain at hand, and a mom who will stop at nothing to help her daughter heal…guilt free!
If you are facing a similar circumstance, I invite you to leave the guilt at the door and be proud. Because you are doing the best you can.
And that is more than enough.”