Fielding my son’s new questions about his Alagille syndrome
As he ages, he's wondering about his treatments and smaller-than-average body
I knew the questions that would come from my son Finley one day. We’ve been slowly teaching him about his Alagille syndrome. At almost 4 years of age, he’s aware that he takes medicine every day to help his condition. He knows that one of his medications helps with his itch while the other, in simplified terms for him, helps his “poop turn brown.”
But recently he’s been starting to ask different questions — which I knew were coming, even if I’m not feeling completely ready for them.
However, I’m not sure how anyone prepares for the harder questions. I suppose they start by planning talking points, similar to how I drafted my elevator pitch about Alagille syndrome for people who don’t know about the condition. That pitch is to inform others, while this challenge is to inform my son, letting him know that he has a rare genetic condition, that he’ll be different from his peers despite being a smart, capable young man. That’s daunting.
Finley loves going to school in his favorite coat. (Photo by Jay Sandstrom)
The other night, Finley said to me, “My medicine makes me small. I do not want to be small anymore.” My heart sank. Finley is developmentally on track in almost every way. He’s proving to be quite the intelligent boy, in fact. But as a picture of his preschool class reveals, he’s quite smaller than his peers.
Adjustments come with change
Nutrition and growth are currently our main focus when it comes to his Alagille syndrome. We monitor his liver and heart, but those have been stable over time. And though he is growing on a curve, following his own path, his size is still less than the 3rd percentile for his age.
We were getting ready for bed when he popped that question, and admittedly, I wasn’t prepared for it at that moment. I took a beat and tried to gather my thoughts.
First, I reminded him of the purpose of the medications he takes in the morning and at night. Then I tried to reassure him that he’s still growing and will keep growing. We talked about how food makes us big and strong. He seemed to understand those points. But I felt there’s more to be addressed than I could yet explain.
Since that moment, I’ve been working through scenarios in my head. What other questions is he going to ask? How are we going to work through fully informing him that he has a condition that’ll never go away? I know we’ll navigate these topics as a family.
Finley will get all the support he needs. But it’s a challenging task. For now, I’m going to let Finley drive those topics. If he wants to ask questions, I’ll be there with answers. I just hope I can find the right words.
Note: Liver Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Liver Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to liver disease.
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