Monday, July 5, 2010

No Sleep for the Weary

Photo of Noel and Anna meeting Jane Seymour.

I guess I'll address the issue of sleep since Noel hasn't let me get any. Of all the issues that arise as a result of the Angelman Syndrome, sleep deprivation is the only one I have a hard time dealing with. Noel seems to be prone to never sleeping. As a single mom, I don't get relief. I can't even take a nap when Noel goes to school because I have to take care of my other daughter, work, clean the house, run errands, etc.

Probably the worst part about Noel not sleeping is the lack of a pattern. She can go to sleep fine and get up for 10 minutes and go back to sleep. She can get up for 3 hours. She can stay awake until 1 or 2 am and then go to sleep. Last night for example, I couldn't get her to sleep until 1 am. Then she was up at 4:45 am and still has not gone back to sleep. This was after a full day of 4th of July stimulation, and a 3 mg. Melatonin time-release pill.

So I have not yet found a drug that will work for Noel, but I do hear of success for other angels, especially with Melatonin. If you want a time-released Melatonin you can get one at Amazon. Not all stores carry time-release.

Most Melatonin pills are sold in either chewable, or capsules that must be swallowed. I was really nervous about this, but Noel had so much saliva in her mouth, she swallowed them without even a sip of water. Younger children would benefit from a liquid Melatonin:

I did try Clondine, but it gave Noel arm and leg tremors (and didn't help with sleep anyway). In addition when she was young I used Valerian Root. That didn't work on a consistent basis either. I am to the point where I think there is no medication to get her to have a full night's sleep. Even when she was a baby and had to have a CAT Scan and MRI, she needed 3 doses of Valium and me laying on top of her to get her to sleep. I stopped them from using the Chloral Hydrate after 2 times of it not working and making her sick as a dog for three days after.

One of the most common phrases I hear from people I know is "You must be use to not getting any sleep." How does anyone get use to sleep deprivation. I always respond with, "No, I don't get use to it. I just accept it." Afterall, God does promise not to give us more than we can handle.

I Corinthians 10:13

No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it.

1 comment:

  1. Thank you for sharing these candid and heartfelt glimpses into your life. You are such an inspiration to all mothers. Keep up the excellent work!