New battles royales as new medicines are added to the mix

My son Finley is like most other kids his age: He benefits from routine and likes knowing what to expect. He’s not a fan of any deviation from what he wants his plans to be. I can admire his steadfastness, but at times his inflexibility can cause major difficulties. Throw in the fact that he was born with Alagille syndrome, and that’s a recipe for some challenging situations.

One routine that Finley generally handles well is taking his medication. He expects to take three medications in the morning and three in the evening. Two of those he takes twice a day; one he takes only in the morning; and another he takes only in the evening. I can typically hand him the three syringes involved, and he takes them himself with no issue. Occasionally he needs a reminder or two, which is expected for a 4-year-old.

But when a new medicine needs to enter the routine, the you-know-what really hits the fan. Maybe it’s an antibiotic for an ear infection, as happened recently. Or when we have to resume a vitamin supplement. Or when we give him Tylenol (acetaminophen) for whatever reason a young child might need it. When that happens, he freaks out at just the sight of the new medication, and everything becomes a battle. It’s one of the most stressful parts of my role as a parent and caregiver.

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Finley enjoys some of his favorite foods. (Photo by Jay Sandstrom)

I know he needs to take the medication. But he doesn’t want to, and sure as heck isn’t interested in hearing my reasoning for why he needs it.

For example, Finley recently had surgery to repair a hydrocele that he’s had since birth. I’ll go into more depth about that procedure in a future column, but as part of his recovery, he’s supposed to be taking Tylenol and ibuprofen on and off to help with pain management. Finley doesn’t care at all about those explanations. He just knows that he isn’t interested in taking anything that isn’t part of the normal routine.

That makes administering his medicine frustrating. We’ve tried every trick in the book. Some of them work, some don’t work at all, some work once and then never work again. It’s exhausting. It’s hard not to get angry. I’ve lost my cool more times than I’d like to admit, all from trying to get him to take something that’s intended to help him.

I hope that, as he gets older, these challenges become less challenging. That we’ll continue to work with Finley to adapt to changes. Because, unfortunately, having Alagille syndrome is going to involve the unknown sometimes. That may be obstacles he’ll need to face or difficulties that alter his most comfortable routines. I hope it won’t be anything major, but you never know when you’re dealing with a rare genetic condition.

I’m continuing to work on how I bring myself to these situations. I’m working on staying calm while knowing when to step away and not force the issue.

Finley will, we hope, become more adaptable over time. We’ll all do our part to get there together.

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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