Reagan has been having some major sleep issues for the past couple of weeks. We have experienced sleep issues a few times with her in the past, but never anything that has gone on this long or this intense. She wakes up about an hour after going to sleep and is screaming, it takes up to an hour to get her to calm down. She will go back to sleep and wakes up a few hours later and we repeat the above. Last night she woke up again at 2:30am and I couldn't get her to go back to sleep so I turned on her tv and dozed off while she enjoyed her show. Her normal wake up time lately has been around 4:30am, regardless of how much she wakes up during the night. One of the most unfortunate things about having a child with Rett is that she can't speak to tell me what is hurting so it's a guessing game and a process of elimination.
The first few nights we thought it was related to stomach issues...maybe she has gas or is constipated, these are common occurrences so we focused on those first. Her g-tube is still fairly new so we are thinking that we just have to work out the kinks. Then the next step is maybe the new constipation medicine (Miralax) is causing her stomach pains so we switched back to lactulose. Then she got sick with a fever and couldn't keep anything down for over 24 hours so we had to start the searching process over again.
Today she seemed to finally be feeling better after being sick so I was hoping that tonight would be the turning point. But, instead tonight was the first night that i turned to medication to get her to sleep. I know we have been lucky to not have many sleep issues yet since it is common in Rett girls. I think the next step will be to call her neurologist and get a prescription for sleep medicine because we both need some rest! Rett parents, any experience, advice, or input would be great!
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