Monitoring my son’s tooth discoloration, an effect of Alagille

Despite good dental hygiene, we can't control a rare genetic disease

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by Jay Sandstrom |

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When our son Finley received his diagnosis of Alagille syndrome, our family began to address the steep learning curve that is understanding a rare genetic condition. We focused on his main health issues, liver disease and pulmonary stenosis, but didn’t expect the many ways these conditions would affect Finley.

A blond 3-year-old boy smiles broadly for a professional photo. He's wearing a green shirt and the wall behind him features a pattern of gold hexagons.

Finley was all smiles at his recent picture day. (Courtesy of Jay Sandstrom)

I want to talk about the teeth of individuals with Alagille syndrome. Finley’s teeth were far from my mind when we were going through our diagnosis phase. At that point, he was only a few months old, and his liver and heart function were taking center stage. As we learned more, the various effects of Alagille syndrome came into view.

A 2014 article published in Medical Science Monitor notes, “In children with serum bilirubin level more than 30 mg/dl, biliverdin accumulates in the dental tissues, causing a variable, greenish-brown dyschromia of teeth.” High serum bilirubin levels can be a feature of Alagille, causing symptoms like pruritus (itching) and jaundice. It can also result in tooth discoloration, as the article explains.

Finley is now 3 years old and has begun to show some tooth discoloration over the last year. While it’s not a direct threat to his health at this time, I’m still concerned as his parent.

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Little stressors

We send Finley to day care each day, and while the teachers know he has Alagille syndrome, I don’t expect them to understand all the ins and outs of his condition — especially when it comes to his teeth. Still, I cannot help but feel stressed that his teeth may appear like they’re not being properly cared for. We brush regularly, to the extent that Finley will cooperate. He’s in a fiercely independent stage and wants to do everything by himself. But to the untrained eye, his teeth look unclean.

A young boy smiles broadly, wearing a blue T-shirt and cap. The background is blurred, but he appears to be at a park outside on a sunny day.

Finley enjoys the sun at his brother’s baseball practice. (Photo by Jay Sandstrom)

There are a lot of these little stressors that come with having a child with a rare genetic condition. I have written about a few of them in previous columns. Some you can work to control, some you cannot. Right now, when it comes to Finley’s teeth, we have to stick to the general care routine; the rest is somewhat out of our hands.

One thing I’m extremely thankful for is our pediatric dentist. We have visited him twice with Finley, and during our first visit, he pointed out the discoloration. As you can probably imagine, he had never worked with a child that has Alagille syndrome before, so he didn’t know that it could cause tooth discoloration. The dentist was in no way dismissive, but I left that first appointment worried that he thought we didn’t take good care of Finley’s teeth.

Six months later, at Finley’s next dentist appointment, I was prepared with facts and information regarding Alagille syndrome and its impact on teeth. It turned out I didn’t need to be so prepared, as our dentist had taken the time to research Alagille. Before I could even say anything, the dentist shared everything he had learned and let me know that he was happy with Finley’s overall dental health, despite some discoloration.

A young boy sits in a swing, holding on to the chains and smiling at the camera.

Finley loves swinging at the park. (Photo by Jay Sandstrom)

I left that appointment on cloud nine. It felt incredible that our dentist had gone out of his way, not only to learn more about Alagille, but also to come to our appointment prepared with information to put me at ease. I cannot thank him enough for that, and I hope to keep bringing Finley to that office for as long as we can. The experience was that positive.

Alagille syndrome and the rare disease world bring with them a whole host of issues we have no control over. It can make me feel, as a caregiver, that I cannot provide my child with what he needs to be healthy and happy. Adding tooth discoloration to the mix has been hard for me, as dental hygiene is typically something we have a semblance of control over.

We will continue to monitor Finley’s dental and physical health, controlling what we can. He’s currently a happy, stable 3-year-old, and I have to remember to celebrate that every day — even when he’s driving me up the wall, saying, “I do it myself!” in his loudest toddler voice.

Finley is a special kid, and a little tooth issue won’t hold him back.

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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