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Recently, my son Jackson, who has Alagille syndrome (ALGS), had a trip to the emergency room (ER). He is 3 years post-transplant due to ALGS. His liver transplant in combination with his ALGS definitely can cause a scare and chaos in our household pretty quickly. 

Jackson is typically a tough little boy who doesn’t really whine or cry about much. One Saturday evening, we were in the drive-through line to grab an easy dinner and he started crying. Suddenly, the cries turned into yells of pain as he was complaining of a stomachache. Of course, we were stuck in line and it took what felt like forever to exit the line. 

As soon as he started more than crying, I started to panic. I just wanted to get him home and check him out and see if I could figure out what was wrong. 

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We finally broke free of the line and made it home. I had to carry him into the house because he said he was unable to walk. He was doubled over crying about his lower abdominal area. Once we got inside, I put him into a warm bath to see if that would help soothe the pain. I started asking him questions like “What does the pain feel like?” and “Did you go poop today?” 

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I started becoming more concerned about him as this wasn’t typical of his behavior. He isn’t a complainer like this and usually shakes it off and continues about his day. Once I took him out of the bath, I dressed him, and he lay in bed shivering violently. He whispered, “I’m shaking because it hurts so bad.” I knew that was it and I needed to get him to the ER. 

Of course, with his transplant and ALGS, I worry about blockages the most. I needed to be sure there wasn’t some sort of blockage causing this sudden onset of pain. The ER staff were able to get a hold of someone at the children’s hospital where he’s normally seen and we were able to check if there was anything specific we should be looking for. 

The ER doctor was more concerned about his appendix based on the location of the pain. Of course, I gave them his full history and asked lots of questions. My mind always wanders in situations like this, and I was concerned that he was developing post-transplant lymphoproliferative disorder (PTLD).  

After a few hours and several tests, including an ultrasound, the findings were all fine. They couldn’t find a specific reason for any sort of pain. Jackson vomited one time in the ER room then took a 2-hour nap. After he woke up from the nap, he felt completely normal and was ready to go home. Thankfully nothing serious was wrong and in retrospect, I probably jumped the gun and should’ve tried to wait it out at home a little bit more. It was a long, interesting Saturday night.