A Wild Ride: Our Blog

Part One: Pre-diagnosis

My son sits on the leather sofa in the psychiatrist’s office; his long blond hair falls over his eyes. “The better not to see you, my dear.” After five years on medication for anxiety and depression, at the age of 11, Nicholas wants to go off the pills. I want it to be his decision. He dislikes traveling the distance to the doctor’s office for quarterly check-ups, and he feels he no longer needs the medicine. My reaction: I’m not so sure.

The journey to today took almost nine years -- nine years since his pediatrician ruled out any physiological cause to Nicholas’s problems. The journey took even longer if you consider that Nicholas’s symptoms began at birth.

He cried. Oh, how my baby cried. Nicholas had acid reflux from the moment he began to nurse. I walked the dark halls of our home at night, holding my baby close. I could tell that every swallow was a struggle. Pediatric medications did little to relieve his suffering. At three weeks, Nicholas took an adult medication -- Zantac. I was uncomfortable with the dosage, but nothing else worked.

The adorable child I longed to stay home with, care for, adore, and most of all, touch, continued to cry however. I held him close, inhaling his sweet baby smell, but my light touch caused him great physical discomfort. A kiss on the cheek could send him into a neurological tizzy. I paced with him, whispering soothing words. I rocked him in an infant swing. He cried when I picked him up; he cried louder when I put him down. He seemed in constant pain. Babysitters came and went. Riding in our car only aggravated him. On rare occasions when he fell asleep in the car, I prayed for red lights to turn green. I displayed the sign “Baby on Board.” After all, it was my responsibility to warn other drivers that I would do everything in my power, including driving erratically, to give my son a few moments of restorative sleep. Precious sleep.

As Nicholas grew, he registered his dislike for unfamiliar places by becoming irritable and defiant. We joined playgroups, gym classes, swimming lessons and music programs. We were lucky if we lasted ten minutes. First he moved as far away from the other children as possible, then his body turned rigid. We were always the first to arrive and the first to leave.

“Anna wants to invite Nicholas to her birthday party at the pool,” one mom told me. I cringed at the offer. Birthday parties, we learned early on, were dreadful activities best left unexplored. I wanted to say, “Nicholas hates the sugary cakes and the incessant noise of the other children. If you are planning to play any games, you need to know that if someone accidentally touches him, he may go ballistic.” Instead I said “Sure. He’d love to come” and then I lived to regret it. Finally I learned to fib, “Sorry, we’re busy that day.” No hurt feelings OR explosive meltdowns. I’m not a liar, just a mom.

As he grew older, every fresh situation brought new levels of anxiety and complaints of physical ailments, headaches, stomachaches, exhaustion. I continued to search for underlying causes, but I believed that, for Nicholas, sleep held the key. Each night Nicholas would finally doze off after six books, two glasses of water, a half-hour of cuddle time (being held just a certain way) and assurances that there were no monsters in the closet or under the bed. During the winter months, I lived in fear that the howling wind would cause a power outage. I knew that the silence from a power failure would be deafening and the loss of electricity would stop the gentle hum of the refrigerator – the only sound that soothed Nicholas as he slept.

“Mommy, can we get up now?” I often heard Nicholas call from the bottom of the stairs. Four a.m. is NOT a good time to get up at any age, so I picked him up and carried him back to bed. “No, it’s time for sleep.” “Will you lay down with me?” “For three minutes,” I told him, not wanting to create a dependence on me for his middle of the night comfort. I watched as three minutes passed on the clock. Then I trudged back up the stairs to my own bed.

“Why don’t you just…?” “Have you tried…?” “Don’t you think he’ll outgrow…? Unsolicited advice became an occupational hazard as well-meaning friends and family members offered their interpretations of our situation. I explored every remedy suggested. We visited a naturopath who eliminated dairy but added acidophilus and melatonin. We traveled several hours to a world-renowned homeopath who handed us tiny white pills of unknown origin for the frequent stomachaches. But, the homeopath informed me, “There is nothing I can do for Nicholas’ inability to sleep.”

As Nicholas’s nights grew even shorter, his behavior became more erratic, and his mood sadder. I slowly, but intuitively, realized that he needed psychiatric help. And seven years ago, at the age of four, with the guidance of our pediatrician, we found the perfect doctor for our situation.

Next Thursday: Part Two: Diagnosis
Series originally printed in The Buzz.