I quickly learned in the few months after my son was diagnosed with Alagille syndrome (ALGS) that I had to live life in the present and understand that this disease was not one path for all. But I am a person who likes answers. In fact, my son’s medical team will tell you I am a scenario player. I come up with different scenarios based on the current situation so I can process the situation at hand and a few “what if” situations if the current problem should go that way.

It helps to curb the anxiety that will come along with all of the wonderings later on. Learning that we had to wait, watch, and see what path our ALGS case would take, was extremely hard for me. It is hard as a parent to have more unknowns than knowns about your child and his future. The worry and fear that sets in can be overwhelming.

Our team closely monitored my son. We went to appointments to meet with hepatology every 3 months as this was our main focus. During most of the appointments, we had lab work completed. Oftentimes, we were able to complete the labs prior to the appointment so we had the results to trend and discuss together. After we trended his labs, we talked about some “what if” scenarios.

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My son had a conjugated bilirubin level of around 10 that trended down and liked to hang out between 3 and 5. They told me he was still too young, and it was still too early, to tell what would happen. They said they see kids “bounce back” from the higher liver numbers we were seeing and go on living life without a transplant. They also gave me the alternate scenario where they have seen kids in the same situation, and they stayed stable and did not need a transplant for several years.

With a great unknown about my son’s medical future and whether or not he would be one of the 20% who needed a transplant, it was a huge win to have such a supportive medical team behind me. I feel fortunate that we have been able to be in the care of some of the top doctors in the world for ALGS. We get the ability to meet with them and pick their brains. We get the luxury of them having an unending reservoir of knowledge from the many cases they’ve studied and treated. They have best practices and have seen similar cases and have great suggestions on which kind of treatment to try. We usually do not have to wait and obtain answers unless they are consulting with colleagues in a different area.

For 2 years we waited and watched. When my son finally started to develop other horrible symptoms of ALGS is when we finally knew the path that we would take. With the development of uncontrollable itch and xanthomas covering his entire body, the team and I discussed, and we felt it would be best to go ahead and move forward with listing him for transplant due to his current quality of life. The wait-and-see process would have been even more difficult if I did not have a strong medical team behind us.