The dietitian is on my case. He’s unhappy about how much my son weighs.
In a country where childhood obesity is at epidemic levels, Deane is underweight.
He is 14 but will soon be surpassed by his nine-year-old sister in both height and weight. Some of this might be genetic – I’m not exactly a giant – but there’s no denying that he is small.
It’s not that he doesn’t eat. He enjoys eating and likes a respectable range of foods – meat, fish, eggs, cheese and most vegetables. In fact, he likes most things except fruit (not for a lack of trying on my part).
Part of his cerebral palsy means that he has difficulty swallowing. When he was young, we thickened his liquids to make sure he didn’t aspirate them. Eventually, after years without any choking incidents or pneumonias, we were told it takes him three or four attempts to swallow what is in his mouth, but it eventually happens. This makes eating slow – not to mention messy. I spend probably an hour and a half a day feeding him.
But eating is only part of the equation.
Some of his diminutive size is the result of not walking. As counterintuitive as it sounds, weight-bearing helps bones grow. The pressure of carrying your body weight causes bones to create more tissue – to grow – to deal with the increased pressure. So if you don’t walk and exercise regularly, your bones don’t create more tissue.
It all results in the dietitian not being happy with me. His standard recommendation is that we give Deane prefabricated, fortified milkshakes. But they all seem to come pre-flavoured. Despite Deane’s range of tastes, we couldn’t find one he would drink.
The next step from the dietitian is pouring olive oil over everything Deane eats including in his milk and his cereal. As disgusting as that sounds, Deane was OK with it.
We tried it for close to a year, but it didn’t have a noticeable impact on Deane’s weight. At this point, we were given an ultimatum – gain 10 pounds or it was time to talk about a g tube to supplement his caloric intake. A gastronomy tube, universally known as a g tube, is a small hose or tube inserted directly into the stomach.
I have resisted the idea a g tube Deane’s whole life. I know I’m being irrational, but despite Deane’s disability, he is not a medically complicated kid. The most we have to do is remember to mix a laxative powder into his milk each day.
My image of g tubes is a medical environment complete with intravenous stands and bags of liquified nutrients. The port site (where the tube goes through the skin) requires specific daily cleaning and would mean extra care in holding, carrying and dressing. It can also get infected. My hesitation to a g tube was reinforced by two of Deane’s health care professionals.
From the mother of one of Deane’s classmates, we got on to a flavourless caloric boost. It is a powder that dissolves in liquids and can be sprinkled – dumped would be more accurate – on to solids. This is adding about 120 calories to each meal.
So how are we doing on our campaign? Deane is gaining but slowly. Although he feels bigger, stronger and heavier, he has gained only a couple of pounds.
I know should be worried about this. I do my best at every meal to increase his portions and top it up with the calorie powder. For some reason, I can’t get worked up about this. Maybe I’m in for a nasty shock.
For another story on underweight disabled children, see Anchel Krishna’s blog in Today’s Parent.
I think you should continue to trust your instincts. When your son’s blood work is checked and vitamin/amino acid levels are checked, are they good? Is he healthy, overall? I understand the hesitancy over the g-tube — I have a friend who was able to hold it off for many, many years for her daughter with severe cerebral palsy. She finally had one put in when the aspiration problem became too big, and even pureed foods weren’t working. I can’t imagine how laborious it is to feed your son every day, but I do understand your reservations about introducing the tube. I will keep my fingers crossed that an increased caloric intake will do the trick!
Thanks for the encouragement. He is healthy overall. He is due to get blood work soon because he is going in for an operation. I hope when he is in the rehab hospital they don’t decide it is too much work to feed him.
Hi — If you read my comment on the Today’s Parent piece, you’ll know that I believe strongly that the weight “issue” is turned into a crisis by nutritionists/GI folks when often none exists. Our kids have different growth patterns and shouldn’t be compared with the growth charts of typical kids. The amount of stress this places on parents is huge.