Gaining weight can be a concern for someone diagnosed with Alagille syndrome (ALGS). It can even be challenging to keep on the weight that took a lot of work to actually be gained. It seems like weight and nutrition are always a discussion when it comes to ALGS. For my family, what this means is that my kids eat a relaxed diet and are probably allowed more junk than the average kid their age. It can be a struggle to find the balance between moderation, healthy eating, and ensuring they gain weight.
My kids who have ALGS are on the smaller side. Weight has not been such a concern for them that they need feeding tubes or special diets, but rather, the plan is to allow them to eat whatever they like just as long as they continue to gain weight and are at an appropriate point on the growth chart.
They are monitored at every appointment for their weight, and we go through the typical questions regarding their diet and what we can do to bulk them up. At times, there have been concerns around (not to the point of needing feeding intervention) but discussions around ways to add extra fats and proteins to their diets, including moving forward with prescribing appetite stimulants to try to put some additional weight on them. We’ve also met with a nutritionist to go over ways to try to increase their calorie intake.
Sometimes, this can become a struggle for me because I also want to make sure that my kids are getting nutrients and have a balanced diet. I like to shop organic and buy things that are better for them even if they don’t taste the way my kids think they should taste, like organic candy that has less sugar than some other brands of candy on the market. A lot of times, I have to choose my battles in buying foods that are “healthier” in terms of less processed, organic, etc., over buying foods that only taste good so I can get my kids to actually eat them. This means that I consider more “junk” food, like fast food, cookies, candy, and chips.
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It also becomes difficult because I don’t need the extra fats in my own diet, so I tend to buy 2 different types of items such as whole-fat milk for the kids and low-fat or almond milk for myself. Of course, I offer them options like vegetables. And if they’ll only eat the ranch dressing offered with their carrots, I consider that a win.
I allow my kids to eat whatever they like so that way, they have the best chance at weight gain. Often times, this requires making extra meals or additional sides at dinner just so I know they have something to eat that they like and there’s a chance that I can help to move the scale. I try to make smart substitutions to add calories and fats to their meals and offer things they like that are healthier, such as full-fat yogurt.
If my kids want candy or soda, I’ll allow it so that at least they’re getting some sort of calories in their body, but it’s not all I allow them to eat. I’m finding more clever ways to hide those nutrients in foods they’ll eat!