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My daughter who is now 8 years old was diagnosed with Alagille syndrome (ALGS) when she was 3. At that time and throughout her earlier years, especially as a baby, she was so itchy she would scratch herself open and draw blood. She had scabs all over her body, never kept shoes and socks on her feet because of the need to scratch them, and had a lot of trouble sleeping through the night. We didn’t realize why until the diagnosis of ALGS.

Since she was about 4 years old, the itching has become mild; however, she will itch her stomach area using her shirt. We’ve always wondered if it’s a habit she learned from a young age that she now uses as comfort or when she’s bored or if it’s her itch flaring back up.

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However, over the last few months, I think she has realized she can start advocating and speaking up for herself regarding medical concerns. She has mentioned on multiple occasions over the last month or so that she is pretty itchy and uncomfortable and wishes it would go away. As soon as she started to tell me she was itchy, my heart broke for her and for having to deal with this in her life. Currently, she isn’t on any medications for ALGS so I wanted to sit her down and tell her there were options such as medications we could look into to see if they would be of any help. 

She had an upcoming routine appointment with her medical team so I wanted to make sure she knew the information she needed. I also wanted her to feel that the appointment was a space in which she could discuss her concerns. We chatted with a doctor about her itchiness and the plan of action was to get some lab work and make sure we checked her lipid and bile acids to get an idea of what they’ve done over the last year.

Obviously, if they’ve increased, that could explain the new onset of itch and we can see what medication might be best for her to try. 

When the doctor mentioned the option of medication to her, she quickly shut it down and just kept saying she didn’t want it. So we had to get to the bottom of understanding why she did not want to try medication to see if it would help.

Recently, she started a new medication for a urology concern and one of the side effects was blurry vision. It, unfortunately, happened to her and lasted for a few days. It made her anxious and we realized after asking some additional questions that she was scared to try the medication for itch because she was scared that would happen to her again. 

After discussing the medication options, and having the doctor explain what medication side effects are and what side effects are of the particular itch medications, she understood a little better. She decided she would like to try the medication. We got her lab work back in an hour and, as suspected, the bile acids increased a little. We are currently going through the prior authorization process for the medication.

Hopefully, this medication will help to reduce her itch and we won’t have to look for other options.