April 12, 2011

Fragile X and Sleep

I was the person who needed at least eight hours of sleep every night... until I had Grant. Every new mom knows that sleeping comes secondary to everything else. I was thrilled when he finally started sleeping through the night at almost five months of age. That meant I could get at least six to seven hours of sleep. Then I became the person who needed at least seven hours of sleep every night. Well, that has changed again. About six month ago, Grant began to have difficulties sleeping through the night. I have read that children with Fragile X Syndrome/Autism can have that issue. 

Disturbances in sleep patterns are often noticed during infancy for persons with fragile X. Boys with Fragile X may take much longer than other infants to sleep through the night. Getting to sleep may be difficult, as hyperarousal makes it hard to calm down. Bedding and pajamas may be scratchy, and their input disturbing. Even older children and adults may awaken in the night and wander about the house. Once they do sleep through the night, many people with fragile X continue to have "internal alarm clocks" that wake them up very early.

Both environmental adjustments and bedtime routines may be necessary to help optimize sleep. Room darkening shades, tapes of soothing sounds, and soft, loose pajamas and sheets may all help with the establishment of a calm atmosphere. Some families find it necessary to install gates or half-doors to prevent their children from wandering around the house at night. The establishment of a bedtime routine, with a regular bedtime and various rituals (stories, songs, etc.) can provide a signal that it is time to sleep. See "Sleep Disorders in Fragile X Syndrome".  (http://www.fragilex.org/html/living.htm)

We keep Grant's bedtime routine the same every night: swinging (in the indoor therapy "cuddle" swing), brushing and pressure therapy, pajamas, read books, prayer, and then bedtime at 8pm. At that time, he plays "quietly" in his room for about an hour until dropping to sleep on his floor. We then put him back into bed and pray he sleeps through the night. Sometime he does - it goes in cycles. Grant will sleep well for about two weeks and then have a handful of nights that are awful. During the sleepless streak he will wake up around 2am and cry, whine, and yell for about two to three hours and then fall back to sleep. It is very stressful to me. We have tried everything: rocking, swinging, brushing, pressure therapy, a weighted blanket, and tough love. For past couple months we have been giving him a "sleeplessness" vitamin but that doesn't seem to be helping (or maybe it is and it just would be a lot worse if he didn't take it... who knows...). The vitamin supplement we give him does not contain melatonin so maybe we should try that... we'll see. Anyway. All this to say, I have now become the person who needs at least five hours of sleep. :)

Any suggestions?

Wait... I think Grant finally fell back to sleep. Yeah! I'm going back to bed. Good-night!


  1. Definitely try melatonin first. We started giving that to our boys (who didn't sleep through the night for the first 2 years of their lives) when they were 2. It didn't help a great deal, but it helps a lot of others and it's a perfect place to start because it's so natural and gentle. Then we started with a tiny bit of Clonidine, and that helps immensely.

    Also, I recall being told once that brushing is something you don't want to within 2 hours of bedtime, for some reason. Brushing hasn't been real beneficial for us so we don't do it much, every once in awhile. But I do remember something telling me once not to do it within 2 hours of bedtime.

  2. Brushing shouldn't be done near bedtime. We use Melatonin for our son and it has been amazing!!! I know it works for some and not for others, but it is worth a try. Good luck!

  3. Thanks for the feedback! That's interesting about the brushing since it seems to calm Grant down but I am going to start doing it 2 hours before bedtime to see if that helps. I'm not completely convinced that brushing is helping him all that much but am hesitant to give up on it altogether. I think we are going to try the melatonin soon. I like that it is natural and am scared to begin any "real" medication with Grant. *Sigh* So much to consider... Thanks again!

  4. Karen, this is a new way I will be in prayer for you. Love, Jenna


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