Sleep Seminar

Randy and I went to another "Evenings with Genetics" seminar this week to hear Dr. Dan Glaze speak about "10 Reasons to Talk About Sleep When your Child Has a Developmental Disorder". You know that we were intrigued as soon as we heard the title given our constant sleep issues. The seminars are free and open to the public. I am not sure how exactly we got on the e-mail list, but we hear about the seminars every month. Some are interesting to us, and others not so much, but I am glad that they offer them. They even offer snacks and this time we were serenaded by some very talented musician-doctors! Some of the past seminars are available to download, and this one was taped so it should be available sometime soon.

Dr. Glaze began with his "Top 10" a la David Letterman about the importance of sleep. Here's his list:

10. Sleep problems are very common in children and teens.
9. Sleep problems are a common parental complaint. (That is us!!)
8. Childhood sleep problems are chronic.
7. Sleep in necessary for children's best functioning.
6. Sleep affects all aspects of a child's functioning.
5. Sleep problems of children impact the entire family.
4. Sleep problems exacerbate co-existing medical, psychiatric, psychosocial, and developmental problems.
3. Sleep is a public health issue.
2. Pediatric sleep problems are treatable.
1. Pediatric sleep problems are preventable.

One point that seemed so obvious that I never considered it is that your brain control sleep so if there are developmental delays and issues it can take longer for your brain to learn proper sleep techniques. Sleeping is actually learned. We teach our children how to sleep just by how we plan and execute their sleep: the preparation for sleep, the environment of the bedroom, timing, how we respond to night wakings, and signals for waking. He said that sleep is something that should be discussed during pediatric doctor visits, but even if it does get discussed, we as parents often say, " Oh, it's normal" because it is the child's normal. It's usual for us, but it might not be as good as it could or should be. He uses the acronym BEARS when discussing sleep:

• B= Bedtime problems
• E= Excessive daytime sleepiness
• A= Awakenings during the night
• R= Regularity and duration of sleep
• S= Snoring

Those are the areas that we should talk about when talking about sleep. The best way to monitor and track these things is with a sleep diary. We did this with Travis because his sleep was so crazy when he was younger. (I tried to find a template online but nothing good came up in the first few pages.) The diary should include the BEARS information at least. If a child is little, especially too young to talk, you might want to include what he is eating and drinking since that is important too. When we charted for Travis, we found that he wasn't sleeping near as long as we thought he was!

With your sleep chart you can discuss what to do next with your doctor. The steps that Dr. Glaze listed are as follows:

How do you manage sleep problems in children?

Part 1: (Preparation for managing problems)

• Treat medical problems (These can include GERDS and medications)
• manage daytime behavior problems
• review and change medicines as needed
• give information and set reasonable goals with parents

Part 2:

• treat sleep problems (apnea, insomnia, hypersomnia)
• sleep hygiene (routine, response to night wakings, position, etc.)
• behavioral approaches (cry it out, Ferber, etc.)
• medicine (specifically to help with sleep)

One area I will elaborate on is sleep hygiene:

1. Expect the right amount of sleep for the child's age and development level.
2. Routine lasting about 20-30 minutes before bed.
3. Put the child to bed awake but drowsy.
4. Ensure a regular bedtime and nap time.
5. Bedroom environment: Dark, cool (less that 75 degrees), safe, electronic media free (only for sleep)
6. Pre-bedtime meal: light snack
7. No caffeine/alcohol- this includes medications!
8. No pre-bedtime exercise (finish at least 3-4 hours before bed). This includes roughhousing!
9. Light: bright light in am promotes earlier onset sleep, pm light delays onset sleep

For us, night wakings and early risings are our biggest problems so I wanted to know what is normal and when to be concerned. Dr. Glaze said we should be concerned when there are more than 3-4 wakings/night, they last longer than 20 mins., they require parent intervention, and they are associated with any of the following: snoring, movements, injurious or unusual behavior, or pain. The other area that should cause concern is if there is daytime sleepiness. If these problems last more that 2-4 weeks it is worth addressing.

Other things he discussed were: specific problems in specific syndromes (including ASD, Rett syndrome, Angelman syndrome, Prader-Willi), sleep studies, narcolepsy, and melotonin. If you are interested, I would suggest you check out the download when it becomes available.

There was a wealth of great information even though a lot of it specifically concerned developmental delays. I really think that we need to have an assessment done of Justin's sleep. He is awake during the night but he plays by himself and doesn't wake us so we don't know it. Randy wakes early for work and closes Justin's door so he doesn't disturb him while he gets ready and the other day he went in and Justin was wide awake! He sat up and smiled and put his face against the side of the crib. We have no idea how often or how long he is awake. But Justin has been really crabby the past month or so even when he just wakes from his nap. He is only happy when I hold him and that cannot happen every day from 3-7 pm! A couple of days this week I have had to put him down for a morning nap AND an afternoon nap because he was such a crab apple! I don't understand what is happening so as soon as we get through this week of three extra doctor appointments and I am feeling up to committing to the trek to TCH I will call about the sleep clinic.