Friday, June 15, 2012


I am sure I have posted about this in the past but this seems to be such a recurrent issue for parents of RS kids. The complete and utter lack of sleep. When our RS babies are born we watch our friends children hit 6 or 9 weeks and miraculously start sleeping better and better. Meanwhile our babies still sleep like newborns. Even as we close in on 6 months many of our kids STILL don't sleep.

I am the mother of an almost five year old child with RS and it is only in the last six months or so that we consistently sleep through the nights (well, not me since I have a newborn but you know what I mean ;D). Until then Abby would wake frequently in the night. Sometimes she would ask for something, water or to be tucked back in. Other times she would just be wide awake and want to chat. Other, less fortunate times, she would be suffering from leg, foot or hand cramps that caused her extreme pain. But almost every night she would be up a couple of time for some reason or another.

We have instituted a nighttime sensory diet, quite time before bed, a rigid routine, white noise machine and fan in her room, several night lights... it felt like we tried everything.

We finally broke down and begged the neuro to give us some ideas, thoughts, panacea's, ANYTHING so we could sleep. He first suggested a sleep study to rule our apnea or other disorders but I wanted to avoid that. Because sleep issues are so common in RS (and neuro issues in general) I was pretty confident that wasn't the case. So had us try melatonin at night (up to 9mg chewable) and she can have another 3mg chewable if she wakes in the night. That in combination with the other things (fan, noise, heavy blanket, night lights, etc) started to work.

The change was by no means instant. It took about six months of this routine to get her sleeping fairly well. Even still she wakes sometimes and I still have to keep a baby monitor in her room. That being said it is a VAST improvement over being up every few hours!

You definitely miss your sleep when you haven't gotten any for four years. :D

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