I met with a dietitian via Skype a couple weeks ago. And ever since that visit I’m beginning to realize that I have some issue with dietitians. An underlying distrust or skepticism…I can’t quite put my finger on it.
When Max was about 3 to 4 months old, he started having these retching fits during or after his feedings. When his tube was installed they also did a surgery called a fundoplication that would keep him from refluxing – as a side effect he wouldn’t be able to burp or vomit until he was older. So when we saw these retching fits we assumed he was trying to vomit and we helped him to get the food out of his stomach via a “decompression tube” (basically burping him through his g-tube). So I decided I would like to meet with a dietitian to find out what was causing this urge to vomit. About two months later when we finally got the appointment set up, we had discovered that Max’s stomach wasn’t moving things through – it was emptying very slowly. His doctor put him on an stomach/appetite stimulant. It took a long time to get the dose adjusted to one that worked for him and allowed him to gain weight. While we were in this adjustment period we met the dietitian. She was wildly unhelpful.
She plugged his weight into her chart and told me that he was in the 15th percentile and that was dangerously close to being diagnosed failure to thrive. She told me I needed to get up in the middle of the night (every three hours) and pump if I wanted to keep my milk supply up. I needed to increase my calories and drink more water in order to make more milk. All of which I knew. I’d read three whole books on breastfeeding (one of which was wholly devoted to how to make more milk) for goodness sake! And she said I needed to consider fortifying Max’s breastmilk with formula in order to get him enough calories to keep him from dipping any further down on the charts. At the close of the meeting I felt confused and frustrated. I was doing everything I could to keep my milk supply up, including taking herbs suggested by my midwife (which the dietitian hadn’t even touched on). The problem was I wasn’t getting enough sleep. The stress hormone cortisol was running rampant in my body and hindering my milk production. But even that was beside the point. Max couldn’t keep down everything I was already feeding him. How could I possibly feed him an entire ounce more at each feeding?
I talked to the doctors and they were not at all concerned about his weight. It’s better for him to be small they said as it will be easier for him to move around. Gaining a lot of weight will only further hinder his motor development. I felt vindicated and wrote this dietitian off as an “expert” who didn’t understand any child who didn’t fit into her box or her computer program. And I didn’t initiate any contact for a long time.
Recently I have been researching blenderized diets. I started by adding baby food to breastmilk to thin it down enough to get it through the tube. A pretty easy thing to start with while I did more research and got the equipment I needed to go at it full force. I thought I needed to talk with a dietitian again to see what caloric and protein needs Max had for his age and activity level. I felt terrible because I know I was short and secretive through the entire meeting, and I didn’t really understand why. It was a new dietitian, she hadn’t done anything to me. What was my problem?
Well, she plugged in her numbers and came up with a daily caloric need of 785 for Max with a protein need of 12 grams. Then she plugged in some more numbers and determined that right now Max is only getting between 595 and 645 calories and only 6 grams of protein per day. She suggested since he isn’t very active to try to get him between 700 and 750 calories per day.
So I set off to my research. I figured that if I tried to get him his protein needs that the calories would come since protein is pretty calorie dense. I had heard about Spirulina being a good plant-based protein source, but I wasn’t really sure what it was. I discovered it’s a seaweed and the only complete protein that is plant-based. I also found that I could get it in powdered form which would be easy to give via tube. I didn’t have a fancy blender that could blend up anything yet, so I was pretty limited in what I could give Max as a protein source, so I figured this was a good option.
A week later we met with Max’s Gastrointestinal Doctor. After a week of giving Max 1-2 teaspoons of spirulina per day, he was at the 59th percentile and heading straight off the growth chart! Now I don’t know if the spirulina is just that good, or if the extra calories were just that much more than he needed, but WOW! I told the doctor about the dietitian recommending even more calories than I was giving Max and he just said, “well, that’s what the numbers say, he’s not going to fit what the numbers say.” (Did I mention I love our GI doc?)
My initial distrust of the dietitian was unfair. I should have been more open when meeting with a new dietitian, but I had been burned. And it turns out I was right to distrust – I got burned again. It’s frustrating to me because the dietitians that I have worked with specifically work with kids with special needs. They should understand that not every kid has the same needs – that each special case requires a special plan of care. It’s not good for any child to go skyrocketing off the growth curve. Maybe it’s because these dietitians are part-time/work from home types and they don’t have the time to really get to know a child’s case and give relevant recommendations. But I know it’s going to be a while before I contact a dietitian again. To be frank, I just don’t trust that they would take the time to get to know our case if they did have the time. I’m a busy mom and I have better things to do than to listen to irrelevant recommendations for my child based on averages. My son is not average in any way, and he never will be. Someday I may try working with a dietitian or nutritionist again and at that point I will do my best to do so with an open-mind, but for now I need a break from people who try to put my son in a box – who think they know him based on his labels. Labels are too easy.