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Managing Alagille syndrome (ALGS) can be very complicated and can affect your life in ways you never would have thought. This is currently something that my family is dealing with. My son has had 2 dental surgeries and a lot of dental work done before he was 4 years old. While a lot of the work and surgeries were more traumatic for us than him, they are currently affecting his life in a few ways that we never would have imagined when they initially occurred. 

The dental issues arose related to his ALGS because of severe vitamin deficiencies for the first year of his life, coupled with the numerous amount of medications he was on. ALGS is also known for its issues related to teeth and dental health.

Our first experience with my son’s teeth was when he was 1 year old. His front teeth started to decay and break off right in front of us. This led to him having emergency dental surgery in an office all while being tied down and awake. It was a truly traumatic experience. But from that day on, and currently, he has been living without his top 4 front teeth. 

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Living without these teeth is difficult. In addition to missing the top 4 front teeth, he’s missing several other teeth throughout his mouth that were pulled during the other under-anesthesia dental surgeries he’s had. 

Read more about comorbidities in ALGS

Now that he is 6 years old and in kindergarten, he’s encountering some speech issues. The dentists and specialists have all agreed that the speech concerns are likely due to him not having the front 4 teeth to push his tongue against to form correct letter sounds. It’s very hard for us to decipher what he’s saying at times.

This is also causing trouble for him at school, including the speech department wanting to work with him for special help because they are concerned about his speech. I can appreciate their concerns, but he has been without these teeth since he has started learning to talk, so of course there are going to be issues. We are all hoping that when his permanent teeth grow in, his speech will improve and it’ll be easier to understand him. 

In addition to speech, eating is also a concern for him. It is hard to eat without those top 4 teeth and several other missing teeth. We are always worried when he eats that he will choke because he isn’t chewing his food well enough. A lot of it has to do with the fact that he has to bite using his side teeth and quickly chomp down food. 

In addition to the food and concerns over choking, we are also concerned about any issues this may cause at school because his teeth are quite yellow, several are missing, and he has silver crowns on most of his back teeth. He hasn’t experienced any schoolmates making fun of him yet, so I can only hope it doesn’t become a concern. 

Thankfully, I noticed after 5 years of being without his top 4 teeth, there are 2 that are finally starting to grow in. It is going to be crazy when they grow in since we’ve basically known him without them. I have high hopes that this will resolve a lot of the fear around eating and speech concerns, and that from here on, we won’t have any major concerns with his adult teeth relating to ALGS.