Monday, October 29, 2012

FASD and Sleep

That we are not much sicker and much madder than we are is due exclusively to that most blessed and blessing of all natural graces, sleep.   ~ Aldous Huxley
For those suffering from FASD severe lifelong sleep troubles are often associated with their condition.   We have very definitely experienced this with Little Man.  He has exhibited all of the classic sleep issues of an individual with FASD; delayed sleep onset, frequent waking, night terrors, and early waking.   There have been times where I went days with no more than 4 hours of sleep.  This is unbelievably disruptive for a caregiver / parent but I also think it is horribly detrimental to the child.
 It’s well documented in the medical community that inconsistent or inadequate sleep creates health issues, behavior issues, and problems with cognitive function.  The most typical behavioral and cognitive symptoms read almost like a list of FASD symptoms.  Behavior symptoms induced by sleep issues include hyperactivity, aggressiveness, inattentiveness, impulsivity, depression, and other mood disorders.    Cognitive symptoms include problems with verbal fluency, comprehension, abstract and deductive reasoning, planning, flexibility, inhibition, problem solving, attentiveness, vigilance, memory formation and motor skills.  I’m not by any means suggesting that sleep issues CAUSE the problems of FASD.  Alcohol exposure during neural development did that.  BUT I think it’s reasonable to say that sleep issues amplify these issues and may interfere with interventions aimed at improving them.  Given that, treating sleep disturbance in people with FASD should be, in my opinion, a major concern and focus of interventions aimed at improving their skills and quality of life. 
Unfortunately, there are not a lot of scientific studies backing up this theory.  Even worse, finding a doctor that specializes in diagnosis and treatment for FASD (there are criminally few of these folks) who also specialize in sleep disorders is nearly impossible.    There has been quite a bit of research showing that persistent sleep loss during critical developmental periods is especially harmful to healthy cognitive and motor development and that children subject to long term sleep loss may never reach their developmental potential.   It seems unnecessary to me to do specific studies confirming the same for children with FASD before simply working to improve their ability to sleep.  If it is critical to the development of a neuro typical child then it should be at least as important to one that is neuro compromised.   So in addition to educating more healthcare professionals about FASD – we need more to be aware of how to treat sleep issues. 
There’s precious little I can think of that I can do the help get that rolling.  But I’ve done a ton of my own research – on sleep disorders ( I suffer from insomnia myself) and FASD and interventions for both so here’s what we do for Little Man (with some theory / reasons for why / how we came up with this routine.) 

We use liquid melatonin 30 min before bed time.    Melatonin is the hormone in the body that directly regulates circadian rhythm – or the body’s sleep wake cycles.  The circadian rhythms, including sleep and pineal melatonin production, are modulated by the hypothalamus - an area of the brain frequently impacted in FASD. The hypothalamus reacts to input of light/darkness and other environmental information from the cerebral cortex (also often impaired by FASD) which then influences the timing, duration, and quality of sleep. Given that the areas of the brain regulating production of melatonin and the signals used to trigger it are often impacted – supplementing seems like an obvious tactic to me.  And for us – it works.  After adding this to Little Man’s nightly routine his “sleep onset” time went from anywhere from 1 to 2 hours to about 15 minutes.
Little Man sleeps under a weighted blanket with a very soft foam mattress pad on his bed.  The patterns of damage in the brain of a person with FASD are highly individual but tend to be widespread.  The ability to regulate sensation is almost always compromised.  Weighted item therapy has a long history of helping calm sensory dysregulation.  Plus – again – it works for us.  After adding this to Little Man’s nightly routine his “night time arousals” went from 3-4 a night to once or twice a week.  This was recommended to us by a young man who has FASD during one of the sessions we attended in Jeff Noble's Caregiver Kickstart program.
We have a set bed time routine of Bath, story time, singing and snuggles in the rocker from which we do not deviate – ever!  General good sleep hygiene suggests you should have a consistent bed time routine that consists of calming activities.  I know this is helpful to me with my insomnia.  People with FASD generally do better in any activity that is structured and consistent and often have problems with deviations from routine so this just makes good sense.  The Rocking chair portion also addresses Little Man’s vestibular processing needs.
 In times of absolute desperation - cosleeping.  We don't get much sleep if we allow little man in bed with us.  Its kind of like trying to sleep inside a cememt mixer.  But his bed has a trundle and I will at times sleep there with him if it i s the only way to get any sleep.  there is no research or recommendations I found for this - its my own last ditch idea before we found the things above.
Unfortunately what works specifically for my Little Man may not work for every person with FASD.  Hopefully it gives you some ideas though.  Other things I have seen, heard, or read about you may want to consider when looking to help your own FASD’er are:
Bedrooms should only be used for sleep - not play or punishment
No screen time for some set time period before bed
No horseplay or physical activity close to bed time especially running or spinning
More or less food before bed (low blood sugar from not eating or conversely reflux from eating may be a  problem)
Remove allergens from the room – dust, carpets, animals, use hypoallergenic covers for mattress / pillows
Deep breathing, Yoga, Meditation
Massage, Acupressure
Brushing / Joint compression protocol
Telling / reading Social Stories about sleep
Occupational Therapy for sensory integration during the day
Seek out a sleep study clinic to see if there is another underlying medical issue or advice on sleep medications
Pay attention to all sensory stimuli that may be impacting them and try to adjust that input according to their needs:
Sounds (use white noise machine)
Smells (aromatherapy can help)
Lighting level (more or less depending on their issues)
Clean orderly soothing room – minimal stimuli – little furniture, soothing wall color, no hangings few toys etc.
Texture of bedding or night clothes

Here’s a list of my research sources on this topic to help you with our own detective work.  I wish you all good luck and Sweet Dreams!!
Academic Editor: Myron Genel  Copyright © 2010 James E. Jan et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

1 comment:

  1. This was one area where we got lucky with our son. He needs more sleep that other kids. I think he just goes so hard all day that he ready to collapse by the end of the day. Sometimes he asks to go to bed. A few nights ago I said, "OK, 10 minutes until bedtime." He said, "Mommy, can we just go to bed now?" I know he may not always be this way, but I an thankful for it now!