We raised his calories in May after our semi-annual visit with his endocrinologist. We observed that he’s continuing to grow well but would still benefit from an increase in dosage of his daily HGH injections. However, we also noted that even though his height was climbing steadily along the 50 percentile curve, his weight had plateaued—he wasn’t gaining and had actually dropped lower than the 40 percentile. We also found his thyroid level was a little low so he started on Thyroid medicine.
With his weight behind the curve, an increase in HGH and medication to speed up his thyroid, we were all ecstatic (especially him) to increase his calories. We didn’t want a sudden weight gain or to get him used to eating foods that he would have to later cut out if his weight increased too much, so we started out gradually. We hoped to increase to about 1000-1100 calories a day. Just that little bit of calories made a big difference in each meal.
As it turned out, we had several opportunities over the summer for Cainan to be weighed and measured. Each time, he showed an increase in height and weight, but only by a pound at a time over about 6 weeks. The weight gain was working and it was staying slow and steady.
Also over the summer, I was able to keep Cainan VERY active and realized I could give him more food when I knew he had actually expended some real calories during the day. One of our greatest feats was climbing Table Rock, a 2.8 mile round trip hike with an ascent of 720 feet. Though it was painfully slow and it took a lot of positive, upbeat motivation to keep him going (I had to carry him 2/3 of the way the last time we did this hike) he did the whole thing on his own two feet (I was heart-breakingly proud of him!!!!).
I used an app on my phone that’s supposed to keep track of the distance we hiked, elevation change, steps taken, pace, etc…and includes calories burned. It’s based on my height, weight and age but it said I supposedly burned 1700 calories on that little jaunt. Our first stop after getting back in the car was Dairy Queen and Cainan had his first ever Butterscotch dipped cone.
We recently saw the endocrinologist again and Cainan’s height is staying right on track in the 50th percentile even with the increase in the HGH (so that was the right move). His weight is also back on a climbing curve and just above the 40th percentile. The doctor’s happy and we’re right at about 1200 calories a day now—that’s where I finally felt comfortable adjusting his calories. He’s pretty happy with the amounts he gets to eat now and some of the new foods he gets to try.
We are extremely fortunate that Cainan is seven years old and does not have any signs of food-seeking behavior. Though he asks for food between meals and snacks, we can usually redirect him or accommodate him but other than a handful of times that wouldn’t be that different from a typically developing child, he has never taken food he shouldn’t have. He’s pretty satisfied with the diet he’s on (Praise God!).
Below is a list of what he ate today. Mondays are typically our swim day so I normally give him extra calories but we skipped it today since I’m still a bit sick. And though the count is a bit low today, he still got some pretty big meals--they just happened to be some of my lower calorie recipes.
If you’re confused by any of this, you can get lots of information about Prader-Willi syndrome (the condition Cainan has) by visiting www.pwsausa.org.
Two servings of Egg Beaters = 60
½ a low cal bagel w/ light butter = 60
4 oz of Trop50 OJ = 25
Small Banana = 60
1 veggie pancake = 140
Carrot sticks = 25
Grapes = 60
2 TBS Tzatziki = 25
8 oz Vitamin Water Zero = 0
¼ cup carmalized pumpkin seeds = 110
Fruit Leather = 35
2 servings of chili mac (homemade low cal recipe) = 160
Watermelon = 20
Tomatoes = 15
Non-fat Ranch dressing = 15
8 oz Vitamin Water Zero = 0
Slice of Banana Nut Bread = 200
Grand Total = 1080