Trouble with sleep?
Written May 2018
Abnormal brains and brain activity make going to sleep and staying asleep challenging for ASXL children. These challenges are compounded with respiratory issues like sleep apnea and gastric dysmotility that slows bowel movements, which may wake the child in the middle of the night.
Even non-ASXL children and parents sometimes have trouble falling asleep. Here are some tips to help with sleep!
Calm the body
After a long day, it is a calming experience to have nice warm bath. Add some Epsom salts to relax the muscles and some essential oils like lavender to calm the body. When bath time has ended, rub coconut or almond oil to massage the body. Families can bond, improve their stress and immune systems, and sleep better from massage – even infants! Finally, use a natural chest rub like Maty’s to create calm and relieve congestion.
Children with gross motor delays may not be able to release all their energies in the same way that other children can – they are not running around and playing in the same way. One way to help calm the body is with a weighted vest (*see recommendations below before use) before bedtime.
Relax the mind
Prepare a caffeine free tea like chamomile or ashwaganda. Let it cool down and slowly drink the tea. Choose a few of your favorite books, sit in a comfortable rocking/recliner chair, and read the stories in character.
In the background, plug in an aromatherapy machine. Some have rotating colored lights. Choose a soothing essential oil such as eucalyptus oil for respiratory health, peppermint oil for gas or anxiety, lavender oil for headaches, or tea tree oil to boost your immune system. Stop using any electronics or viewing televisions an hour before bed time.
Another option is to invest in a bedtime kit that includes a foam roller, timer, weighted bear, and classical music.
Create a restful ambiance
Now it’s time to set the mood. Dim the lights or turn on a small night light. Create background noise with a sound machine that may play ocean waves or rain. Use a light projector of moving waves, images of stars or underwater creatures, or anything of your preference. Turn on a cool mist humidifier to add moisture to the air and ease congestion and coughing. Make sure to empty and dry the humidifier daily to keep it clean.
If all else fails, talk with your neurologist about implementing a consistent regimen with melatonin or other sleep medication.
Having a routine helps set your biological clock to rest and wake at the same times each day.
Hope these tips bring more restful sleep in your lives.
Sweet dreams!
*Weighted vest recommendations:
Precautions
Be mindful of overheating—especially during use in warmer weather
Should not exceed 10% of body weight
Wearing schedule
Although there is no set prescription of wearing time, generally it is recommended that a child wear a weighted vest for a minimum of 10 minutes (to receive effect) and not to exceed a maximum of 45 minutes so that the child does not habituate or become under aroused (sleepy)
Vests are typically worn during the entire duration of an activity (~30 minutes)
Provide an hour break between wear, and only use vest when necessary—as this is not similar to wearing AFOs or hand splints; with a vest you’re not trying to increase wearing time
When to wear it
As weighted vests can be calming for children, wearing it a half an hour before bed time can be beneficial
Wearing it during large group activities or events where there is excessive stimulation
Any event that is stressful for a child (haircuts, trip to grocery store, during ADLs)
During activities where the child has difficulty focusing
Medical disclaimer: This website does not provide medical advice. Our website contains general medical information about congenital ASXL mutations. This information is not medical advice and should not be treated as such. You should always talk to your or your family member’s health care professionals for diagnosis and treatment, including information regarding which drugs or treatment may be appropriate for you or your family member. We do not represent or warrant that any particular treatment is safe, appropriate or effective for you or your family member. In the event of a medical emergency, you should contact your doctor immediately or call 911.