One of the big issues that gets discussed a lot on the FASD Facebook forums is sleep and the lack of it. If you are one of the lucky people with a child living with FASD who sleeps well, count your blessings. Our middle daughter always falls asleep within five minutes of the head hitting the pillow, can sleep through anything and always wakes up ready to go. She is also the one who has very few self-regulation and mental health challenges.
However, our youngest has really large sleep issues. It is always 60-90 minutes to transition into bed, and 60-90 minutes to get going in morning. We have been doing all the regular things to encourage sleep and have been meeting with medical professionals. We received some information that was new to us and thought it might be helpful for you.
We know routine is important but it needs to be a routine that works for everyone. If we have to make a choice between routine and escalation or being willing to adapt, we adapt. We used to try a 8pm then 9pm bedtime but we were finding my son would just play and toss and turn until 10pm at the earliest and lots of time 11pm. We made the decision we would rather have him be physically active until 9pm and make himself more tired. We make sure there are no electronics including TV the hour before he goes to bed. We do the Melatonin every night and give him Vitamin D in the morning. His room and bed is a cave with blankets and curtains blocking out light, window open to cool the room, a blue LED light instead of a regular nightlight, and one of the better investments was the $35 white noise machine from Amazon. It has been one of the few things that has made a difference. We did stop Melatonin because our pediatrician said melatonin does have the opposite effect on 2% of people and will keep them awake.
We always follow the routine of get our snack, gather up our stuff and go to our room, make our bed, do our bathroom routine, get into bed, cuddle with Mom and give a hug to Dad. We did use Mom's Fitbit for a few nights to get a sense of the type of sleep he is getting. We saw from the Fitbit he was likely not getting any REM sleep because he was moving every 20 minutes or so.
So we got a referral from his pediatrician to a fellow pediatrician with an interest in sleep. It was very nice in that she was aware of how FASD can impact sleep and commented on the fact we are doing everything she would want parents to be doing. She also mentioned she agreed adapting instead of escalating is an excellent choice in her opinion. Finally, she also went on to say she really doesn't like using medication which is fabulous as the thought of adding another medication to the current cocktail is a little intimidating.
She shared with us that no one sleeps for much more than 90 minutes before stirring due to our survival instinct. She was also intrigued with the Fitbit data but she won't use the data because Fitbit won't share the algorithm they use to determine sleep patterns. Sleep specialists don't know if the Fitbit algorithm is based on research or not which is why they have a similar device called an actigraphy which is also worn at home. She thought our son may have restless leg syndrome so she made the following recommendations. She said consider a weighted blanket because of his sensory needs, and take additional iron without consuming dairy or citrus before going to bed. She said if you have an elevated iron level, that can help increase sleep. Finally, if these things don't work, then we would look at a medication called gabapentin. She also said it could be sleep apnea but there is no treatment for sleep apnea other than the head gear which our son would never use due to his sensory needs.
While we don't have any great solutions yet, it is encouraging to know once again we are working with a team that gets it. Sleep is such an important part of our health and yet there are so few doctors, treatments and research articles. It has been connected with mental health, anxiety, intelligence, heart conditions and other aspects of our lives. And frankly, as a caregiver for children impacted with FASD, sleep is vital for all aspects of our entire family.
On another note, at the last SEAC meeting for the Catholic District School Board of Eastern Ontario, Superintendent Dr. Hawes announced they elected to use the additional Ministry money to hire an Occupational Therapist to focus on sensory needs, a lead Psychologist, a Behavioural Psychologist, and a Speech-Language Pathologist to create a multidisciplinary team to support all students. It is so inspiring to me that this school board took action to support its students in such an unique way. Once again, I am so proud of our school board in making this happen.