Is anyone aware of a sleeping medication BESIDES MELATONIN for toddlers with ONH?

My daughter is 3 1/2 years old. She has ONH with a possibility of very little light perception. She also has sensory processing disorder. She has nights where she will go to sleep at 8pm and wake up at midnight or even 2am and we get up at 6 to get ready for school. By the time we are getting ready for school she has been up for 4-5+ hours and is so upset. Shes so tired and cranky. More times than not, by noon her school is calling me to have her picked up because she is "acting out," she doesn't like taking naps there. She has been taking 5mg melatonin every single night for the last 3 years. It seems its not working anymore. I don't know if she is immune to it or not, but its not helping. If anyone has heard of anything that can help us with her sleeping schedule, PLEASE let us know.
#verytiredmommy

Topics: Sleep Solutions
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Posted by Amber Bobnar on Mar 13, 2017 - 4:33pm

We used melatonin for a while and it helped, but we also saw it decrease in effectiveness. Ivan's neurologist told us it's not really intended for long term use (even though I know some kids stay on it for a long time).

Have you looked into non-24 disorder? It's not that unusual amongst kids (and adults) who are blind. LeAndra wrote about her daughter (who also has ONH) and how they got her sleeping under control: http://www.wonderbaby.org/articles/sleep-schedule

Sleep is something we've always struggled with - even with things are going well, I know we'll end up with a new issue very soon! Have you ever thought about seeing a sleep specialist? Boston Children's Hospital has a great sleep program in their neurology department. They can do a sleep study to make sure there isn't anything physically wrong that is interrupting her sleep (like apnea, seizures, etc) and can help you manage a sleep schedule or even prescribe medications. It's definitely worth seeing if your local hospital has a similar program!

Posted by brigette on Mar 14, 2017 - 11:42am

Amber,
Thanks so much! Funny you mentioned the sleep specialist, we just got an appointment yesterday set up for this April. Unfortunately, we will have to wait until then. We use weighted blankets and melatonin for now, but I have noticed it loose its ability to help also. I have looked into non-24 and i couldn't find much information for children. Thank you for the link, I loved all this advice and VERY much appreciated you commenting.