Adventures with mommy! Pete the cat book launch followed by lunch at 5 Napkins and a stroll in the park (mom had to do minimal carrying of child)
I know these photos don’t depict a child struggling with severe anxiety but she is.
Screaming and crying for hours at night, unable to be consoled in any way, it’s been heartbreaking. And exhausting.
I’ve been in touch with her specialist. We are considering changing her sleep medication. She’s only on one medication for sleep. Clonidine. And am so grateful that we’ve been able to keep the drugs to a minimum so far. Most girls with Rett syndrome are on upwards of half a dozen medications.
Clonidine obviously hasn’t been working so great lately. But I may have found something that has – continuos release melatonin. It never worked for her in the past, but the past two nights she’s been sleeping. Is it luck? Is it melatonin? I don’t know. But I hope we continue with this streak.
blueberriesandgiggles 
Love, hugs and sleep to both of you!
Let’s have a pizza party soon…I love you both so much
Hi! I Found your blog when googling Rett syndrome blogs. My daughter got the diagnosis about 4 months ago (she’s almost 4-yearold), so I’m trying to find and read everything I can about it. Such a sweet girl you have! Wishing you all the best!
Thanks for reaching out Laura! Do you know about the Rett Syndrome Family Support Group on Facebook? That group has been such a place of support and knowledge over the past few years for me.
Hello! Just happened upon your blog when googling Melatonin and Rett. My daughter has been struggling, big time, sleeping.. looking for something more natural to help aid sleep. Is it still working for your daughter? and which one are you using?
Lily’s sleep is often all over the place. We are now back on clonidine (.1 mg) and a melatonin patch that I ordered from amazon. Will try to find the link. This combo worked for about 4 days. But it’s 3:30am and we’ve been up for 2 hours. So for us, nothing works 100% of the time. Good luck to you and your girl!!!
Respro Labs Natural Melatonin Patch Sleep Aid, 7 mg Continuous Release – google it and you can order on amazon.