Meeting Dr. Rowe

A diagram from Dr. Rowe shows how Dysautonomia correlates and connects to most of Jayde's illnesses.

Each trip to Hopkins is full of anxiety. We never know what will change or be discovered. Today's appointment felt like two lifetimes in the making. If I had to choose one word to sum up Jayde's appointment, it would be—validating. Growing up, my joint pains were written off as growing pains. My migraines were dismissed as mere headaches. I stopped seeking medical treatment because I could not bear to hear yet again, "We cannot figure out what is wrong," or "It's all in your head." Though medicine has advanced since my childhood, some doctors practice medicine, while other doctors specialize in medicine. When I realized Jayde was sick, I was determined my fate would not be hers. I refused to give up on her or allow any doctor to make her feel insignificant by dismissing her. Today was the culmination of all of that.

Jayde's comprehensive exam with Dr. Rowe, lasted 4 hours and 15 minutes. Although it only took several minutes to understand, he saw her on a level that only a few doctors have exhibited on this journey. He unearthed more of the iceberg while discovering several ABC illnesses that need to be added to her already long list. Regardless of how daunting, the picture of her health is more in focus than it has ever been. We add CFS-chronic Fatigue Syndrome, TOH-Thoracic Outlet Syndrome, MCAS-Mast Cell Activation Syndrome, TMJ, and PCS-Pelvic Compression Syndrome to her list. He is setting up Jayde with a specialist at Hopkins to treat her hyperhidrosis. He is also running a ton of bloodwork and scheduling full neck and brain scans to check for Chiari Malformation and Craniocervical Instability. As disheartening as it is to hear a new diagnosis, there is a comfort in knowing something Jayde-Rhiannon has been enduring and fighting finally has a name. 

Toward the end of the appointment, Dr. Rowe asked me if there was anything else he should know or how I would describe Jayde. I told him, "The one word I would use to describe her is fierce." For me I think that is one of the most difficult parts of this journey. Watching your child determined not to give up, even though her body had other ideas. He smiled and nodded before he looked at Jayde, making his final statement: "This is all very real. This is not in your head." I laughed, silently thinking, "Tell us something we don't already know." Yet, the truth is, we have both waited a lifetime to hear those words. 

      

*Update: Special imaging studies must be done to rule out Chiari and CCI. Jayde had the positional MRI, where she had to sit upright and be still for over an hour. It was grueling and painful, keeping her bedbound for a few days afterward. We traveled to Lanham, MD, for her to have the CT. Both imaging studies showed what Dr. Rowe suspected: Jayde has Chiari Malformation and Craniocervical Instability. Though the surgery is risky and few neurosurgeons are qualified, it is necessary. Unfortunately, the best qualified surgeon does not accept our insurance. Covid is not helping any of this either. However, Jayde is still sick with a migraine, so it's a snuggle up together and pull the covers over our head kind of day.