Deane’s weight is so far below the curve on a standard growth chart that it is unmeasurable.
No wonder the dietitian is giving me ultimatums. It is very distressing when the doctor points to a spot inches below the sweeping curve of normal weight for 14 year olds.
But what I’ve found out on our weight-gain journey is that there is another growth chart that tells a very different story.
As part of our struggle to “fatten up” Deane, our pediatrician set up an informational appointment with the g tube clinic at The Hospital for Sick Children in Toronto. While not advocating a g tube, she thought it would be helpful for me to get a better understanding of the risks and options.
Deane and I met with a nurse practitioner, a dietitian and a doctor. They were all very friendly women so Deane thoroughly enjoyed himself (Teenager!) They were aware upfront that this was for information purposes only which put me at ease as well.
They weighed him and measured his height (length). We went over his eating habits in exacting detail – do you know how much milk you pour on your child’s cereal? We covered his medical history and the concerns of the other dietitian.
Then they called up a growth chart for boys with cerebral palsy who are transported in a manual wheelchair and feed orally. According to this chart, Deane is above the 50 percentile in both weight and height.
I was surprised and confused. If this other chart exists, why is Deane not being measured on it?
It turns out that there some debate about using charts segregated by disability. The Dietitians of Canada, in a 2010 policy statement, said that these growth curves have been developed from small sample groups and use older data. They suggest using the disorder-specific charts in conjunction with the standard charts. They don’t however spell out what that means.
Obviously, the specialists at an internationally recognized hospital didn’t have any hesitation using these charts.
So where does this leave parents. By the thoughtful and supportive responses to my first post about Deane’s weight, I realize there are many parents caught between the medical community and their own instincts.
I still feel that I should be doing everything I can to help Deane gain weight especially as he is enters what should be a period of significant growth. But, if the reality is that kids with his level of disability simply don’t grow that big, am I just creating undue stress for all of us?
Until I figure out an answer, you’ll find me at the table shovelling those calories in .