Sleep, Baby Sleep!

Sleep...a precious commodity in this household. I think Gavin has had difficulties with sound sleep since he started teething as a baby. With hypotonia (low tone) that comes with Down's, you might feel a tooth under the surface of the gums and expect to see it within a few days or weeks. This is delayed by MONTHS with Down's. Molars are the worst! We've experimented with many different things over the last few years. The sleep inducing cocktail-du-jour is 3mg melatonin WITH magnesium and 1/2 an adult benadryl capsule, given about 2 to 3 hours before bedtime. The magnesium helps with regularity, believe it or not, and after re-reading a brochure on Crohn's disease I see that kids with Crohn's usually need magnesium and other supplements anyway. I always purchase my drugs from Kirkman Pharmaceuticals. I think they're out of Lake Oswego, OR. They seem to have the most consistently effective melatonin on the market. I can't tell you how many other brands we've tried. Some brands were completely ineffective! Did they not properly estimate shelf life, or have quality issues? Melatonin is used by many individuals, is not habit forming, and does not give you a "sleep hangover" like ambien or other prescription sleep drugs. I've met several people in the military that have to work 36 hrs. on/36 off and use it to get sleep when they can.
At one point, I sought help from an MD at Children's Minneapolis specializing in sleep disorders. I had to chart Gavin's naps, sleep, waking hours, etc. for 2 weeks and provide extensive background information. The Doctor reviewed the paperwork and said, "Mrs. Lee, we find that about 97% of children with this dual diagnosis (Down's + Autism) have sleep disorders their entire life! " This came at a bad time, when Gavin was getting up once or twice a night and needing help and supervision to get back to sleep. He also gave some other helpful suggestions, such as DON'T LET HIM NAP DURING THE DAY! and MAKE SURE SOMEONE BESIDES MOM IS PUTTING HIM TO BED SO HE DOESN'T ASSOCIATE MOM WITH FALLING ASLEEP! (Rotate!)
I have always been the parent that has gotten up with Gavin, ever since he was born. Randy has provided relief on occasion, but I don't like him to be up at night with Gavin and sleep through his meetings at work during the day. After all, he is usually the only wage earner in the family! My attitude toward Gavin's care, housework and yardwork has ALWAYS been, that if I work as hard at home as Randy does at work, things will be allright for all of us.
So, back to the topic of sleep...
Things I've tried include a weighted blanket to give him some deep tissue (proprioceptive)input...(not suggested in the South in the summer with 100* and 90% humidity!)
Aromatherapy...a diffuser with essential oil of Lavender or orange.
Medications....tried different combinations of benadryl, and melatonin. Room darkening curtains or blinds...(A MUST for Gavin..he is VERY light sensitive)
Soft music or sounds from nature...right now we have the sound of a babbling brook.
Joint compression...I take some lavander lotion and massage it into his hands and wrists. Apparently, Crohn's patients also have issues with joint pain. No wonder all that deep pressure stuff feels so good to him!
Sometimes he is so over-stimulated I have to turn absolutely EVERYTHING off and shut all the doors so it's as dark as possible. He usually chooses a toy to take to bed with him, and I give him a 5 minute warning...5 more minutes and time to put your toy away! Then I repeat every minute counting down from 5 until we're out of time and he has to give me his toy. I put it out of reach, but where he can still see it.
There is usually a time during the year when the melatonin stops working. I know when this is because instead of being asleep within 2 to 3 hours, he is up playing and seems like he could continue playing all night!
At this point (we just happen to be there now) I take him off his bedtime medicines and try to follow his bedtime routine without. The longer you can do this, the better, as it encourages his little body to try and produce it's own melatonin again.
So far, he's going to bed later, but he isn't getting up in the middle of the night. (yet!) I'll keep this up as long as I can, but I find that the older I get, the more I like my sleep! I thought that you needed LESS sleep as you aged! Maybe my body is still protesting the whacked out sleep schedule for the last 10 years!
Hope some of this information can help you or someone you love. Until then, it's time to Sleep, Baby, Sleep!