Monday, October 17, 2011

Sleep issues

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!


  1. we tried melatonin at first but now Avery is on Clonidine. it is wonderful. gets her to fall asleep and STAY asleep. every now and then she will awaken but will always go back to sleep with out much fuss. it is MAJOR. I remember those nights of waking and screaming and crying off and on all night. we have not seen ANY side effects! loving the 12 hours of sleep!

  2. one word: trazodone. we used it for a year and it was heaven sent. leah didn't sleep for 3 months prior to finding a prescription and we were apartment managers with neighbors below and to the side of us. it was miserable. lots and lots of hugs.

  3. So sorry to hear about the sleep issues. We miss Reagan here in Texas and hope that you and Reagan can find the rest that you all desperately need and deserve. Take care, Ms. Debbie