My son is learning the importance of taking his daily medication

As my kids age, I am teaching them responsibility. We talk about their duties at home, at school, and in public. Some of these come naturally, while others require teaching moments.

While Finley, my 4-year-old son who was born with Alagille syndrome, learns about the expectations for him at home, he’s been pushing the boundaries. Other Alagille families will understand one responsibility that he’s pushing back on: taking his medication.

Finley takes three syringes of liquid medication and vitamins every morning and evening. I have written multiple columns about our trials with medication, but Finley is generally amenable to taking what’s necessary. Taking medicine every day is all he’s ever known. But now, at nearly 5 years old, he’s pushing the boundaries on his daily routine.

Earlier this week, I came home on a remote workday and discovered that Finley had not taken his medicine. Typically, I give him his meds on a plate with his breakfast, and I need to remind him a few times to take everything. But this time, despite the reminders, he did not take his medicine, and I missed it.

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Finley shows his silly side at the tree farm. (Photo by Jay Sandstrom)

This heightens my worries. While Finley could skip a day of vitamins without much impact, I do not want him to miss a dose of Livmarli (maralixibat). Finley has taken this since he was 1 to treat the cholestatic pruritus, or itching, caused by his liver disease.

I want Finley’s daily life to be as “normal” as possible, and if he’s feeling extra itchy, he’ll likely be more irritable and frustrated. Who can blame him? I know I wouldn’t want to constantly feel itchy.

So when I picked him up from school on the day he didn’t take his morning medication, it was time for a teaching moment. I asked him if he was itchier than normal that day, and if that affected him. In typical pre-K fashion, he didn’t give me much of an answer. But he did listen to me stress that taking his medication is his responsibility. I can hand it to him and remind him to take it, but if he wants to be as healthy as possible, he needs to be the one to actually take it.

I have no doubt that I will need to have this conversation with Finley again. That is to be expected given his age. But I do know that his understanding of his condition is growing, and I need to be there to keep shepherding him down the right path.

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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