The Friday before Thanksgiving, Rita woke up in the middle of the night and was terrified that bugs were crawling all over her. At first we thought she was having a bad dream or night terror but as we sat with her we began to feel otherwise. She was able to talk to us and listen to stories. She went to the bathroom, but all the while she would see spiders and bees and she would be overcome with terror. It became apparent to me that she was hallucinating and really believed what she was seeing. After a few hours, she got back to sleep. The next morning I called her pediatrician. The only medication that she takes is Lisinopril. I had noticed that the compounded medication appeared very gritty in her most recent bottle. I usually can't see any substrate in the solution but this last batch was filled with powder. The pediatrician suggested I cut back on her dose until I spoke with the pharmacy and had it remade. Saturday during the day, Rita was fine. She fully remembered the night's events but had no visions during the day. Saturday night, we decreased the dose and Rita slept through the night. Sunday, I again decreased the dose but she woke up and was again having scary bug visions that lasted for a couple hours but she wasn't as deeply terrified. On Monday I spoke to the pharmacist. She prepared a new compound but it wasn't available until Tuesday. Monday night, with a lower dose, Rita again woke up afraid that bees and spiders were attacking but again she seemed somewhat able to handle it. I was thinking that maybe her powerful, 5-yr old imagination was somehow getting the best of her. She had gone to see Bee Movie a week earlier and Andy and I thought this was the cause of her nightly distresss. On Tuesday night, we started the new bottle. That night was a bit worse but still tolerable. She wasn't screaming at the top of her lungs as she had the first night. I thought about calling the pediatrician on Wednesday but it was a very busy day and during all of the days she was completely normal. She was a happy kid and so I got distracted and didn't call her doctor. She made a picture to hang on her wall next to the bed and said that if she started to see bees at night, she'd look at the picture to get her mind off it. Then Wednesday, the night before Thanksgiving, she woke up around 1:00 AM absolutely terrified again. She was screaming and even though I was holding her, she could not be comforted. She was certain that bugs were crawling everywhere and stinging. After unsuccessfully trying to calm her for half an hour or so, Andy suggested that she get in the shower where no bees could go and I went to call our neighbor who is a pediatrician. Our neighbor felt, as did I, that Rita was reacting to the Lisinopril. I had Rita start drinking water as much as she could. It took three or more hours until her visions became manageable and she could get back to sleep. During this time, I lay with her in bed and told her stories. We sat up for some of it and looked at a book. The stories distracted her but she would still see bugs and also pages of the book moving. If I stopped the stories, the hallucinations picked up and became overwhelming for her again. Luckily, we have a wonderful pediatrician who I was able to reach on Thanksgiving and he advised that we stop the Lisinopril. We did and since then, she's slept through each night without any hallucinations. She's understandably nervous about going to sleep at night but has managed to drift off with me in the room or sitting outside her bedroom door. She's too young to understand what a hallucination is. She knows she wasn't dreaming and believes that the spiders and bees were real. I don't want to tell her that her medication made her have that reaction because she might refuse to take future meds. Anyway, we're now left with the prospect of figuring out what she can tolerate to control her blood pressure and proteinurea. She's been sensitive to every med she's ever been on and over time eventually had to come off each one. If you look up side effects for lisinopril, you won't find hallucinations or misfunction of the central nervous system. According to my neighbor, the pediatrician, children and older people are more sensitive to meds than the general population and it's not uncommon for them to react in an undocumented way. I posted Rita's story on the ARPKD listserv that's read by other parents of kids with ARPKD. I received several informative responses but one stood out. Another family experienced a similar reaction in their 5-year old daughter, taking enalapril. Enalapril is in the same family of drugs as lisinopril--ACE inhibitors they're called. I was also directed to an online post of a 65-yr old man that suffered from hallucinations after being on lisinopril for a few weeks. I posted Rita's experience on a web site that documents drug side effects and I'm writing about it here in the hopes that I can help someone else. We're giving drugs to small children who are unable to detect or report on harmful effects. Since they don't or can't speak up, we assume the drugs are working because we look at machine output that tells us about blood chemistry, blood pressure, and the like. Medicine is too often administered by looking at the read-outs and not the patient. | 
