Just in Time Diagnosis

January 12, 2016

DIAGNOSIS

Question. Denial. Doubt. I watched every video of every physician I could get my hands on. I joined three online support groups. In my gut I knew this was it but my head couldn't let my heart get too far ahead. After all, we had no consistent OCD, no tics, and no cognitive dysfunction.  The children I was reading about were far more severe, unable to function at school, some unable to leave their bedrooms or houses, raging, Tourette-like tics, repetitive movements, some even being hospitalized. We weren't "that bad". Our daughter went to school every day, listened and learned well, and had positive and healthy relationships with peers. I couldn't remember any strep infection but then again, PANS is the version that doesn't require strep so that didn't rule us out. I finally posted my doubts on a PANDAS/PANS support group and one mom responded.  This mother of an adolescent daughter who hadn't been diagnosed for years after onset told me her little girl started off very much like my child. Mostly sensory at age 4 and 5 but full-blown onset of tics and crippling OCD by age 9. "Don't wait!" she cautioned. "Catch it now." she said. "Maybe your child doesn't have to suffer like mine did because we didn't know."  Whatever doubt I had been holding was replaced by an urgency that shook me to my bones. What if we do nothing and one day she sounds like these other children? There would be no turning back. No second chances. Only one chance to get it right and do it now. That was enough for me.

More than twenty pages of intake paperwork later we sent in a deposit with a full copy of our pediatric file, to be put on the waitlist of one of the specialists I'd watched over and over again on those YouTube videos. Six months. It would take almost six months to get in. These physicians are overrun with patients because there are so few like them who understand.

"Just in Time" 

The phrase "just in time" has a whole new meaning for me compared to what it did in the other world of my corporate career. Things continued to go up and down with our child but in December 2015, just three weeks before her visit with the specialist, we saw our first clear symptoms of OCD. Threads. Threads on clothing and bedding had to be cut. Snip. snip. snip. Every morning and every night. With it came "just right OCD" when the image on her new quilt wasn't centered on the bed. Sobbing meltdowns and fists balled in frustration, my daughter was not herself. Tortured. That first night left my husband and me frightened. Frightened and grateful that our appointment had been scheduled and was only three weeks away.