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Nutrition and weight gain can become a big part of managing Alagille syndrome (ALGS). Sometimes it can become overwhelming and other options, such as feeding tubes, are required to help nourish and provide the best outcome. It’s known that those with ALGS have a hard time gaining weight and are of tiny stature compared to their peers.

When my son was first diagnosed with ALGS, one factor that was uncommon and did not fit the “norm” was that he was successfully gaining weight as an infant. Of course, he was on the smaller side but that was not unusual for my kids. He weighed 6 pounds, 6 ounces when he was born, and by 3 months old, he weighed about 12 lbs. 

Of course, after we received his diagnosis, his weight was constantly monitored. He was not the biggest kid, around the 5th percentile for his age, so the team, although happy with his weight and height gain, wanted to make sure that he was gaining as much as he could for the potential to grow as big and strong as possible.

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They suggested we try a specialized formula that could be easier for his body to digest and metabolize. We tried it only a handful of times because he would vomit during feedings. Thankfully, they were happy overall with his weight so we did not need to keep him on the formula. We were very lucky that we did not have to explore options like feeding tubes for him, like a lot of children with ALGS and weight concerns need to do.

Read about comorbidities in ALGS

Further, we met with a nutritionist once to talk about a higher calorie and fat diet. We were able to get some great tips to try to incorporate into his daily eating. We wanted to get him to gain as much weight as possible before transplant even if that meant we continued formula until transplant, which we did. 

My daughter, who also has ALGS, is very tiny. She was not on the growth chart most of her life and now she is finally weighing in on the 2nd percentile for kids her age. The team was more concerned about her growth than my son’s even though she has a milder case of ALGS. For my daughter, we had to start tracking the things she ate. At one point they recommended an appetite stimulant to try to get her to gain a little more weight. We never proceeded with that because thankfully she started gaining weight. 

We do tend to let the kids eat foods that are higher in fat and calories. If we find something they like, such as ranch dressing, we try to incorporate it often so that they can even obtain calories from that to try to put on weight. Sometimes it is a hard balance between offering healthy foods and offering empty calories just to get them to gain additional weight.

My kids have all avoided having to take further steps like feeding tubes, which I’m incredibly thankful for as I see how much stress they can cause. I know how difficult and frustrating it can be to manage growth for parents who have kids with ALGS. It is a process and something to continue to work on every day.