It was the best of medical encounters; it was the worst of medical encounters. But it is indeed a story of how two physicians viewed the same situation very differently, and how one brought trauma to a young patient, and one (two) brought healing to that very patient with the same set of information.
My daughter was a healthy and vibrant 12-year-old when she first had COVID in June 2020. She was a straight-A student, active in her church and community, played rec sports, was a pianist and organist and loved to volunteer.
She was symptomatic but not dangerously so. After around 10 days, the most serious of those symptoms passed. But she just never fully recovered. Later that fall, she was bitten by a tick and contracted a tick-borne illness. It was too much for her body, and even with treatment, her health began to decline rapidly. She was in a wheelchair, unable to walk well, and developed chronic headaches, severe GI pain and classic symptoms of postural orthostatic tachycardia syndrome.
She worked very hard in physical therapy and occupational therapy to recover. By the end of 2021, he was back to about 90 percent of baseline.
And then, in January of 2022, she contracted COVID a second time. All the old problems came back twice as severe. She was diagnosed with hypermobile Ehler-Danlos syndrome (hEDS), postural orthostatic tachycardia syndrome (POTS), dysphagia, systemic mast cell disease, chronic urticaria and so much more.
An MRI showed inflammation in her cauda equina. She had multiple anaphylactic episodes requiring hospitalization, including one to MRI contrast dye (there is no worse feeling as a parent than hearing a code blue being called over the loudspeaker and knowing it’s for your child).
She developed extreme muscle rigidity and posturing from a brief trial of sertraline for chronic pain, which still hasn’t fully resolved after over four months, and for which she still utilizes a wheelchair. Along the way, one of her doctors suggested a trial of scheduled Benadryl (diphenhydramine) to help the muscle rigidity. This not only gradually helped the rigidity, but it also helped her headaches and her general feelings of well-being.
Shortly thereafter, again in the ER to trial another medication, a physician closely questioned the amount of Benadryl she was taking. I affirmed I understood her concerns and indicated where she could see in the physician’s notes that this course was recommended and not something that I had decided to do on my own. Instead, she reported our family to CPS for medical negligence. A social worker showed up with two sheriff’s deputies a few weeks later to begin the investigation (which was closed after no negligence was found and all my daughter’s doctors were contacted). A child who had already been through so much medical trauma was now terrified she would be removed from her family and put in foster care with no one to advocate for her unique and complex medical needs.
Later that month, we traveled 900 miles to see autonomic specialists — a husband and wife neurologist/gastroenterologist team — and gave them all the same information we had given the ER doctor.
They were the first, after two years of unrelenting GI and head pain, to propose that maybe this was a migraine issue. The neurologist affirmed that, yes, it wasn’t ideal to be taking that much Benadryl, but possibly the reason why it helped so much was that she was dealing with both traditional and abdominal migraines. Plus, he could treat them much more effectively with other medications that would allow her to wean off Benadryl.
After a migraine cocktail trial confirmed a migraine diagnosis, the gastroenterologist offered some more hope — couched in multiple infusions of DHE — to fully treat the migraines. For the first time in two years, my daughter’s headaches fully resolved, and her abdominal pain was reduced by at least two-thirds. She was having substantial problems with visual tracking, which also resolved (as well as dysphagia). They put her on a path to health because they believed in her and took the time to listen to our narrative and check the records of her previous medical appointments. They took the time to ponder why the Benadryl made her feel so much better.
She was hospitalized for three weeks between the DHE and other treatments and getting a solid medication regimen. In the time we’ve been home, she’s back to extracurricular activities and church, she’s working hard at physical therapy and occupational therapy. She is plowing through her freshman year of high school, back to her straight As and “can do” spirit. She’s a girl on a mission to make the most of her life, and she has started volunteering again and has organized a toy drive for the child life department at the hospital that treated her so well. All while still needing to rely on her wheelchair (and someone to push it) for mobility.
As a mother, I’m working on not being bitter about the first physician and focusing on being profoundly thankful for the second two. The ER isn’t a place for in-depth medical analysis, and perhaps she didn’t have time to look at the note from the previous office visit (although I did offer to pull it up for her on my daughter’s electronic record).
Often, what happens is meant to be. My family is much more resilient (and I am an even more thorough record keeper) for having gone through this experience. Being a mom of a (now) medically complex child in the midst of a pandemic isn’t for the faint of heart. It’s a good thing she and I are up for the challenge!
Laura Fernando is a patient advocate. Linda Bluestein is an integrative medicine physician.
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