Re: [Families of Angelman Syndrome] SLEEP
- HI, our angel is going to be 18 this coming February and actually has been on clonidine for many years and thankfully works wonderfully. I am just wondering if she is getting enough for her weight. We had to increase to two pills at 0.1mg each, after a few years and this dosage is still helping very well. Also, I am sure you are keeping to routine?? We find that to be a big part of the process. Everyone in the home knows that when Robert has been given his meds, that the house has to calm down, too! We are fortunate enough to have a family room downstairs where the kids hang out. We have 5 children, all living at home, except our oldest who just got married this past May! The others are here along with friends and boyfriends, which Robert loves, but they all know the routine!! I even have the babysitter trained!
Anyway, we usually hang out on the couch together and just watch a video or something on tv. Sometimes, lately he has been even going into his bed and watching tv by himself,such a big boy!!! Then when I think he is about to be ready we walk him back to bed, give kisses and turn on his fan, he has always had a fan going, winter, spring, summer, and fall!! Another thing is that we keep his room very dark, and that way if the sun comes up early, our little angel doesn't and believe it or not, he will not stay asleep with his door open! It is like he has radar!! If you want any other help with your angel, or just someone to listen, I usally try to look at the messages everyday, depending on what life is handing out that day!!
I did see one of the other moms had suggested melatonin, I don't have any experience with that, but have heard good and bad, just like the clonidine!
Best of Luck,
Jean, Roberts Mom!!!!!
carwile95 <carwile95@...> wrote:
My angel is going to be 16 in a couple of months.........was just
finally diagnosed with angelman syndrome 2 months ago. She has never
slept very good at night.......up playing, pounding on the walls, etc.
Her doctor started her on clonidine...does not work for her. Any
suggestions on how to get them to sleep through the night.
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