“Moral of the story, don’t give up. There is probably something out there that will work for your child if you keep pushing for answers.”
In Search of Sleep: Third in a Series on Sleep Problems Common in Severe Autism
By Jesse Minor
My son is 3 years old and was diagnosed with autism, disruptive behavior disorder, and a rare genetic disorder about a year ago, and he has always struggled with sleep! When he turned two it was like a switch flipped, and he didn’t need to sleep anymore. He learned to climb out of his crib and would sandwich his little body between me and my husband. On average, we would get approximately 2 hours of sleep most nights, and we were miserable. Generally, he would sleep from 12am-2am and be up for the rest of the night - with no naps during the day!
We consulted his pediatrician who suggested melatonin which was unsuccessful. Then she suggested we try clonidine plus melatonin and that worked for 2 weeks where he slept maybe 4-6 hours. Then we attempted 1 mg clonidine during the daytime and 1mg at night with melatonin, and this caused him to sleep all day, but he was up all night - not an ideal scenario.
We decided to make an appointment with his neurologist. We drove to the appointment which was four hours away with only 2 hours of sleep from the previous night, desperate for help and all we received was a referral to a sleep doctor.
Thankfully, we got an appointment that week and the sleep doctor has been wonderful! She put him on .2mg clonidine at night with melatonin after our first visit. That still did not help so we raised the dosage to .3mg of clonidine along with melatonin, but that combination resulted in nightmares, and we were up all night. We then returned to .2mg again until we could come up with another plan. Our plan was to try .1mg clonidine at 2pm and .2mg clonidine at 6pm-7pm with 5mg melatonin. That worked for about 2 weeks (like every other attempt) and then he was up for 26 hours with no sleep whatsoever (along with me).
We went back to the sleep doctor, and she added 25 mg of trazodone in addition to the other medications which again worked for 3-4 weeks. He now takes .1mg clonidine at 5pm and .1mg clonidine plus 50mg trazadone at his bed time. This has helped so far. We still have some sleepless nights but nothing compared to what it was!
When he wasn’t sleeping, we were irritable all the time. The only way we slept was to work in shifts, and I volunteered most of the weekday shifts because my husband worked long hours. My son also becomes aggressive and his mood changes when he doesn’t sleep. My husband and I often feel like we have spent our entire parenting experience trying to get him to sleep, (and we still have to do this sometimes).
Along with the meds, we were also fortunate to have a sleep safe bed covered by insurance and that has been a game changer! We started to wonder if we would ever sleep again, but I’m thankful we finally have a plan in place that seems to be effective.
Moral of the story, don’t give up. There is probably something out there that will work for your child if you keep pushing for answers.
My name is Jesse Minor and I’m married to my husband Kelly. We are parents to two children and we live in Mississippit. I am a stay at home mom. Our son Brantley was diagnosed with autism, disruptive behavior disorder, and a rare genetic disorder (HNRNPUL2).