Friday, March 9, 2012

Sleep and FASD, are not friends

Most children and adults with FASD have sleep disorders also.  There has not been a lot of research done in this area, but one study found that 82 out of 100 caregivers reported that their children with FASD have sleep issues.  The issues can range from night terrors, waking up in the middle of the night, sleep onset delay (having a hard time falling alseep), and sleep walking.

Akila has issues with falling asleep, and staying asleep.  She takes Melatonin and Trazodone to aid in her sleep.  I am writing an article with my friend Jerrod Brown on FASD and sleep issues.  At the end of the article, we are listing strategies for assisting in dealing with the sleep disorders that our children, therefore our families face.  I am going to list some of the strategies that have been brainstormed already, but would love any ideas or suggestions any of you may have that are not on the list.  This list has some things that families may find helpful, certainly they would not all work for everyone, but it would be a pick and choose kind of list:

  • Medications including Melatonin, Trazodone and others.
  • Staggering bedtime for different children in your family
  • Consistent bedtime ritual
  • Going to a sleep disorder clinic for a sleep study
  • Weighted blankets
  • White noise, fans
  • No screen time one hour before bedtime
  • Comfort item
  • Night light in room
  • Reduce clutter and stimulation in bedroom if possible
  • Bath before bedtime
  • Deep breathing or yoga late in the evening
  • Keeping same bedtime and same wake time
  • ??
Also wondering if anyone has found anything that helps with teenagers who have FASD and sleep issues.  It can sometimes be hard to get them to take sleep meds.  I fully realize that most teenagers stay up late, and that this is often the norm, and that sleep is vital to the teenage body and brain development.  But I also know of some families who are really struggling right now with their teenagers not sleeping at night.

So please feel free to comment away or email me with any ideas or things you think we should include in the article.

On a side note, I will be sleeping in tomorrow as Akila is in respite this weekend.  I don't mean to rub it in or anything for all you who might not get to sleep in, but I am really looking forward to it!  Sweet dreams.


Rebecca Hawkes said...

Hi. I don't have experience with FASD but I have a child with trauma issues who had sleep problems. The book _Healing Touch for Children: Massage, Acupressure and Reflexology Routine for Children Aged 4-12_ had some specific massage techniques that we used ... mostly foot massage. It may have been partly a placebo effect ... not sure, but it was effective for my child, at least. She was younger than a teenager, though. I also remember that there was an acupressure point ... a spot somewhere on or near her wrist that she would press on. That might be a fairly simple thing for a teenager to do even if he or she wasn't open to the idea of massage. We also used essential oils, such as lavender, that are supposed to be relaxing. A part of that is just to create a scent association with sleep and relaxation.
I hope this is helpful. Great idea for an article!

Carrie said...

Hope has had a hard time falling asleep and staying asleep since she was a baby. A responsive white noise machine has helped. Besides producing white noise, it also senses noise and automatically increases the white noise volume to cover it--trash trucks, snow plows, thunder etc. We also need black-out shades to darken the room sufficiently in the summer so she can go to bed while it is still light out. (This is critical for her because she wakes up the same time every morning regardless of when she goes to sleep. So the only way to get enough sleep is to go to be early.)

Surprisingly, we discovered when we moved, that having her bedroom further away from ours helps diffuse the effects of her restless sleep on us. We don't hear as much of it as we used to so are not intervening (concerned she would wake her sibs.)nearly as often at night. The only sib. near her now is our deep sleeper and we're all sleeping better.

PurlingPenny said...

My teenaged daughter has sleep onset delay. I've read this with much interest. It's just so detrimental to her eduaction when she heads to school totally suffering from lack of sleep. Educators are constantly telling me, to get her to bed earlier. We haven't resorted to medication as I've concerns ...... we do have routines, have moved her room into the basement where she's in a very quiet situation and use relaxation techniques , all having some effectiveness on some days. I'm interested to hear more about how effective the medication route has been, and if there are "hangover" effects the following day or any other side effects. Thanks!

Robin said...

My sons sleep improved when we removed as many potential allergens as possible. We replaced the carpeting with flooring and washed his bedding in hot water once a week.

DynamicDuo said...

Our teen girls don't have any difficulty falling asleep, often asleep on the couch by 8 pm unless otherwise involved in a activity. They go through stages of waking in the middle of the night and want to run. We haven't figured out the reasoning but we do know that physical exertion, sports, heavy lifting etc... lessens this tendency. The times when they are most likely to run are the times when we have had little to no physical activity and no "thrill" activities that they can use to safely get rid of this need to run in the middle of the night.

MsMP said...

I’ve used the same things with my daughter from age 11- to 15-years. I explained to her that research has shown that teens need a lot of sleep (9-11 hours) and how important good sleep hygiene is to mental, emotional, and physical health. When you have enough sleep you can wake up without an alarm.

I start the bedtime routine 1-1.5 hours before the desired sleep time. It makes for great family time and it is good for attachment. I’ll share what we do:

Medication – Exactly one hour before desired sleep time. If less, she is too wound up to relax. If more, she is so tired she is flooded and has meltdowns.

Bath - Take a bath with toys or shower with loud music and put on pjs (needs the distraction as water can trigger sensory overload)

Prepare - Put out clothing and items for school the next day, talk about the schedule for the next day (gets rid of anxiety about the unexpected)

Tea Time – Drink tea and sit close/snuggle with a blanket

Aroma Therapy - Lavender scented room (Mrs. Meyer’s Clean Day Lavender Room Freshener)

In Bed – In sleep position with stuffed animals


Reading or Guided Imagery – I read aloud a non-scary book her friends are talking about (she has great auditory abilities but difficulty reading). We have also used guided imagery during this time which she has liked more the older she gets.

Affirmations and Tapping – while I say affirmations/strengths about her I alternatively tap her on the left and right side of her body (e.g., shoulders)

Prayer – Ask for worries and pray

Tuck-in Ritual

Breathing – Lights out and deep breathing together (3-6 deep breaths)

Auditory Therapy – Play ocean waves (no music). Sometimes we use a fan.

Massage – Massage feet or hands with lavender scented lotion. Rule is that she has to be still and quiet. When she makes noise or moves, I stop for 30 seconds before continuing.

Stay – If she is not asleep before the massage is finished, I sit quietly in the room until she falls asleep (not very long)

I also have to check-in with myself. If I am anxious or irritable, she has a harder time falling asleep. I do a lot of breathing and praying so my body stays calm. She falls asleep faster when I am fully present and calm.

It is interesting to note that she can now ask to go to bed early. The routine has also taken less time as she has learned how to regulate her body more. We have gone from 1.5 hours (sometimes 2 hours) to 45 minutes.

Daily vigorous exercise (one-hour of sweating) makes a huge difference in sleep.

When she has a lot of nightmares and night terrors, we tried co-sleeping during the worst times. This was very helpful. Now she will get up on her own and crawl in bed with me without a big deal.

In residential treatment, they gave each kid a choice of a 10-minute “tuck-in” activity with the adult of their choice. Kids could choose from board games, reading, massage, etc.

Also heard of people who use monster spray around the room before bed (e.g., water in a spray bottle). I bought a stuffed animal that is in charge of staying awake and beating up the bad dreams.

The Keslers said...

One thing I didn't see on the list is joint compressions. I wish we had known about them sooner, it would have helped during the years of being up at night with our daughter! When one of the kids is having trouble going down or getting back to sleep after waking joint compressions have worked wonderfully(even though it seems so strange!!)

bgawboy said...

We have 12 adopted children and are raising our 17 yr old granddaughter. 7 of our children have FASD diagnosis and all have experienced trauma. 5 are on the autism spectrum, 8 have experienced serious sleep disorders. What works for our kids is this combination of strategies:
No TV- Movie on Friday night
No prepared food with ANY kind of additives
No soda or sport drinks
LOTS of outside/physical activity. Our kids run a MINIMUM of 3 miles a day.Some run 6, one runs a total of 9.Every child is physically exhausted when it is bedtime.
Fruit only for bed time snacks.
{This has really helped 2 of my kids: 2 cups of epsom salts in a hot bath before bed on nights we do not have the sauna warmed. On those nights - a hot steamy sauna. Both boys sleep for a whole hour longer!}
The same bedtime routine EVERY night, even when at the cabin or camping.
Diet rich in wild meat, wild rice, organic vegetables and fruits and animal fats.
Quiet - no radios, no ipods after lights out.
Same time up every morning, school or not.

Laura said...

I've heard that many of these kiddos also have unstable glucose and so they (can) drop dramatically in the middle of the night...and so we should give a good portion of a protein snack right before bed..our lil miss wakes up with night terrors, and the nights we DO make sure to give a high protein snack before bed..decrease these huge! And we have very noisy (loud) noisemakers for all our kids...seems to help a lot! Thats all I got:)

Katya said...

Ambien. Yes, it's a sleep med. Yes, it is used primarily on grownups... but it is the only thing that works for my kid. He is (physically) very small, so he takes a very low dose (which does not interfere with the rest of his psychiatric meds) and it has a short half life (so he has no "hangover" in the morning. He's sooooo much happier now that he's REGULARLY well-rested. And, oh my, so is the rest of my family!!

Only downside is it kicks in REALLY fast (wi 15 mon), so he pretty much has to take it when he is in his PJs and about to hop into bed. White noise machine that also makes other sounds (soothing ocean noise, calm breeze noise, etc) also seems to help (his was like $11 on sale at walmart; I cannot think of any other $11 object that has brought me and my family and the other kids and MY SANITY so much happiness).

dorothy said...

The biggest thing we have learned about sleep and FASD's is that we might not be able to improve it. no matter how consistent, what meds and which diet we follow there are several of ours who have had sleep disorders from birth and for those kids we just need to learn to accept it as part of the challenge. Once I stopped hating that portion of FASD I actually began coping better....even when I'm up with them 2-8 times a night. Of course coffee helps!

Steve and Liz Stein said...

My daughter who struggles to fall asleep wears a sleep mask (from airline trips), and we use melatonin 1/2 an hour before bedtime. We also try to maintain a very consistent bedtime/waketime.

Lesllie said...

I do not have FASD but I do struggle with insomnia which keeps me up many nights. I found a lot of information about good sleeping techniques for people with sleep disorders at Thank you for the very informational post!

Mom of 5 said...

We use meds and melatonin, reg schedule, no tv, calm environment, limited things in his room....and he also has a bed safety tent. That has helped, but with all that, he still awakens in the night. My youngest son can sleep through it, but my oldest son can't. His room is furthest from ours so that he doesn't disturb us unless he really needs me. I know this will all change as he gets older and I can't control his environment as well. My son self soothes by rocking and humming when he wakes up, so he doesn't wake me up for comfort very often.

Vis said...

I've had legal guardianship of my 9 year old FAS3 grandchild since birth. I don't think I can remember a full nights sleep I've gotten since. We had tried the medications with no help, so they have been discontinued for 2 years now. We've had luck recently with longer sleep at night by putting her box spring and mattress on the floor (I think she feels more grounded) and a string of Christmas lights around her ceiling. I've also gotten a poster board for her to decorate and attach that at bedtime over her window with velcro to block out tree shadows, light, etc. We used the one you can get at office depot to make school projects (they are a little thicker and muffle some sounds also). As far as night terrors....I remind her each night that she is the superhero of her dreams and can get the bad guys everytime just like superman! I'm waiting for the weighted blanket to come in for hopefully a little more sleep, but these things have all given a little more from what we had to start off with.

Danette said...

Our 10-year-old son is on Clonidine at nighttime - his body would twitch and jerk and so had a hard time getting to sleep AND staying asleep. As a way to deal with his ADHD, we're now using Kapvay in the morning as well. Something about slowing the blood pressure down slows his whole system down. His teachers are RAVING about how much better he's doing! We have noticed a FANTASTIC difference at home, too :)

Victoria said...

I have strung a 50 light string of Christmas lights across the top of my child's wall. We also got a posterboard (one of the fold up ones at office depot)to cover her window at night. She decorated it herself with crayons and markers and I used velcro to attach it so it can be taken down in the morning. It does filter a little of outside noises and keeps the branches shadows etc from being seen. I put her box spring and mattress on the floor....this seemed to give her a sense of grounding. I also remind her each night that she is the superhero in her dreams just like superman. I've given her the "power" to beat her bad guys. All of these have helped a little. I'm not saying she sleeps through the night still. I'm waiting for the weighted blanket to come in. We are slowly getting to where she will at least stay in her room more. I keep a very strict routine and we don't waiver from bedtimes or sleeping arrangements. I've seen a couple more things in here I'm looking forward to trying. I'm not sure I've gotten a full nights sleep since she was born! ;)

Anonymous said...

I have struggled with sleeping disorders for as long as i can remember. As a child, sleep did not come easily, and waking up thru the night was "the norm". In scholl, 3-4 hours of sleep was all I ever got. Many people recommended I try different sleeping meds, but as a teen, I did not want to be hooked on them for life. But, at my job, etc, I was def noticing I needed, NEEDED more sleep. My body couldn't function anymore. Someone recommended I ask at a natural health care store. They recommended Melatonin. I ahd already tried that, and even tho it helped me fall asleep, I would be up 15-20 minutes later again. (I don't think taking one every half hour is recommended, but one night I did do that 3 times, still no success). They instead recommended Magnesium. I take it in the powder form every night before bed. I love it!!! It works incredible. Because it's powder it gets into your system much quicker. It worked for me from the first night on. I could tell I was getting a much better quality of sleep, as well as almost always falling asleep within half an hour. (this may sound like a long time to you, but 3 hours was norm). Whereas I used to hate bedtime, because that just meant lying in bed for long periods of time, I know look forward to it because I SLEEP!!!
Not only does magnesium help me sleep, it relaxes your whole body, so I'm less tense and don't get agitated near as quick. This in turn, means I need the chiropractor less :). Sorry for the long essay this turned out to be, but I am so happy someone recommended this to me. I wish I had known about this way early, because I guarantee I would have done way better at school, etc.
There are 2 disadvantages that I will tell you about tho :)
1- it costs almost $1 per day. But, to me, TOTALLY worth EVERY PENNY!!!!
2- the side effect is diahrea :(. but still worth it for me.
Thanks so much, I hope this helps you! Sharon
PS. there are also many more benefits to using magnesium, including helping restless leg syndrom, thyroid ups and downs, etc.

kaney said...

A discussion about sleep disorder studies and what they have discovered about your sleep. Okay, so you are at the office after a night of tossing and turning. Your concentration level is not what it is normally.

intramax best price

OneLuckyMom said...

I am trying something craaaazy this week, while school is out for break. I've done a lot of research on Mt. Dew and FASD kiddos. Most of the research and comments from parents who use it have been positive for helping with the behaviors/sleeping problems. I, against every instinct in my body, gave each of my seven year olds a small Mt. Dew last night at dinner. By bedtime, before I even gave them their nighttime meds, they were both laying down ready for bed. Now, this could be a complete coincidence, or it could be that the Mt. Dew had a calming effect on them. I am going to continue my experiment tonight.