My son with liver disease will once again need to take vitamins
The need for vitamin supplementation brings back some difficult memories
There are many aspects of my son Finley’s journey with Alagille syndrome that I wish would stay in the past. One that stands out is the multivitamin he had to take as a baby following his diagnosis with the liver disease.
The reason that those memories are flooding back is because Finley, now 4, recently had lab work done, and his vitamin levels were not as high as our doctors would like them to be. No major concerns, but it’s likely he’ll have to go back on some form of vitamin supplementation.
Over the years, Finley tapered off of a multivitamin and vitamin E and D supplements. The multivitamin was one of the most vile things I’ve ever been around, and I didn’t even have to ingest it.
When Finley didn’t have to take nasty vitamins, he was a happy baby. (Photo by Jay Sandstrom)
To put it nicely, the stuff tasted like dirt mixed with battery acid. It was horrible. And on top of the awful taste, it came in a burnt-orange color that would stain anything it contacted.
As a baby, Finley was prone to giant spit-ups, so we constantly had old blankets under him on the couch and kept a massive stockpile of burp cloths at the ready. If a spit-up came after he’d taken that orange multivitamin, we had to get whatever it touched into the washing machine quickly to hopefully avoid a permanent stain.
I have many memories of that vitamin, but it’s the scary moments that stand out. My wife and I were new to administering medications, and one of the tools we were given was a sort of pacifier that you could feed meds or supplements through. It worked pretty well for the ones that didn’t taste awful, but the multivitamin would elicit frequent gagging from Finley. Sometimes he’d gag and throw up when taking the supplement, causing it to come out his nose, making it hard for him to breathe.
I vividly remember the image of him, at only a few months of age, looking panicked and flailing around as he attempted to regain his breath after one of these spit-ups. It was pretty traumatic and horrifying to see that fear in someone so little.
Finley takes his bottle. (Photo by Jay Sandstrom)
Thankfully, we came across the incredible advice to add the multivitamin to his bottle with his formula mixture. It may not have solved our spit-up problem, but it did make administering the vitamin significantly easier. Finley would down the stuff no problem when we mixed it with his breast milk and formula combination.
There was a small drawback, which was that was all of our bottles were permanently tinted orange. Thankfully, it was only an aesthetic issue, and I was happy to make that trade-off.
Now that Finley is 4 years old, we should have more options for vitamin supplementation. We’re still working through the next steps and will discuss our options at an upcoming dietitian appointment.
Once again, I feel fortunate that nutrition is the main focus of Finley’s Alagille syndrome treatment. But it’s been awhile since he’s taken supplemental vitamins. I’m reminded that even if an aspect of his care changes, it doesn’t mean that a chapter has closed forever. As with any rare disease, circumstances can change at any point. I’m hopeful that, at a minimum, we never have to go back to that nasty, burnt-orange stuff ever again.
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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