Recently my daughter who was diagnosed with Alagille syndrome (ALGS) at the age of 3 underwent her first baseline brain scan. Our team of doctors who are very familiar with ALGS recommended my children with ALGS get a baseline brain scan as soon as they can lay still without sedation and if it looks good, we repeat it once every 10 years. My daughter just turned 8 and we all felt it might be a good time to get her baseline completed.
I was nervous about her undergoing the scan since I wasn’t sure she’d be able to lay still for about an hour or longer. I didn’t want to spend the day awaiting the scan and then not getting it completed to repeat it again at a later time. The days leading up to the scan caused a lot of anxiety for me.
Read about HCP resources for ALGS
Continue Reading
I tried to prepare her as best I could the closer to her scan date. I let her know exactly what we were doing and how the procedure would go. Since she wasn’t in need of sedation, we didn’t have to arrive hours in advance, but we took advantage of the child life program the hospital offers so we were required to arrive an extra hour earlier than normal. The program was great for us because they came in and talked to her and explained what would happen. She was also able to pick a movie to watch during the scan which helped to distract her.
As the time got closer, I could tell she was becoming nervous especially because everyone was explaining what was about to happen and she wasn’t sure what to expect when she got in there. Reality really hit her when they asked her to change into the hospital’s pajamas. Before they came to get her for the MRI, she started crying and shared how she was experiencing fear over the situation.
We did our best to calm her down and offered a reward if she was brave and attempted to let them get the images they needed of her brain. I was able to walk back with her and watch her get situated on the sliding table. As they were strapping her in and putting her in place, I started to feel overwhelmed watching her and wanted to make sure the technician could hear her if she started saying she needed help. I wanted her to know it was OK to tell them she needed to get out of the machine or take a break.
I am happy to say she did such a fantastic job. It took less than an hour and we were so proud of her for being so brave and laying still for that long. I anxiously awaited the test results, and everything came back normal with no abnormalities related to ALGS. We were happy to hear the good news and elated that she doesn’t have another brain scan until she’s about 18 years old.
