Doctor, don’t tell me I could do better caring for my kid with cerebral palsy

“You’re doing a good job. But you can do better,” says the doctor, referring to how I care for my eight-year-old son, Sebastian. Um, thanks?

As we put on our coats to leave, I’m biting my lip to hold back tears.

This doctor arrived right at the end of our appointment at the nutrition clinic—a tense appointment in which I’d been making a case for keeping Sebastian off Cisapride, a heartburn drug that was taken off the market in several countries back in 2000 after being associated with 175 fatalities worldwide.

Sebastian has cerebral palsy (CP). It’s a motor disability that affects muscle tone, coordination, speech and eating. Since every physical movement takes many times more effort, it also puts my son’s metabolism in overdrive. He has regular visits to the nutritionist to make sure he’s gaining weight and growing.

Our doctor was just poking his head in to check off a few boxes. Has Sebastian been to the eye doctor? Yes. Has he been to the dentist? Yes. Is so-and-so still his neurologist and have I scheduled an appointment? Yes and yes. Then he looked at my son’s growth chart and observed that Sebastian has grown five centimetres—he is bursting out of his wheelchair again—and his weight has increased. “But not enough.”

It is never enough. And, apparently, I can do better.

To supplement meals taken orally, Sebastian uses a G-tube—a feeding device that’s inserted through his abdomen to get food directly into his stomach. I was feeling proud that, since our last visit, I’d had Sebastian on a diet of homemade blends made with ingredients like coconut milk, avocado, salmon, chicken, quinoa, rice and veggies.

Before Sebastian started this pureed whole-food regimen, the nutritionists had prescribed Duocal, a high-calorie protein-free nutritional supplement to be taken orally. We used it despite the reflux it caused. Then they pushed for the G-tube because he just wasn't meeting their weight and growth goals.

They prescribed something for his constipation. Then another drug to counter reflux pains, so he could tolerate more food. There was talk of adding another medicine to help with motility—one that lists lethargy, heart failure and sudden cardiac death as potential side effects.

Even with all those prescriptions, they couldn’t fix his reflux. They couldn’t fix his constipation. Why can’t they do better?

I do my best. Every day. And every evening, when I’m up late peeling and chopping vegetables, boiling grains, blending great quantities of homemade food and then divvying it up into glass jars to freeze. I set the alarm early, so I can get up while everyone else in the house is still sleeping to get Sebastian’s pump ready and prepare his meals for the day.

What does the doctor want from me?

Four weeks ago, Sebastian had landed in the ER with strep throat. My son couldn’t eat for a week. I had increased his G-tube feeds, since his throat was raw and it hurt too badly to eat. But the antibiotics were giving him stomach pains; he couldn’t sleep until we switched them. Even taking in nutrition by tube had been intolerable at times. Yet in spite of that, I'd actually been optimistic about his weight check because prior to that things had been going so well.

More often than not, when I should be sleeping at night, I’m lying awake, thinking about the list of things I’ll do the next day to make my son’s life better.

Then I wake up and do it all again. Every day.

I do my best.

Read more:
The cost of raising a special needs child 7 things I've learned from my daughter's diagnosis Special needs parenting: Letter to myself four years ago