Sleep

Christy - posted on 02/18/2010

Has anyone ever read the lable on the melatonin(sp)? It says not to use if you have a seizure disorter!!!
Yikes

Stephanie - posted on 02/04/2010

I thankfully don't have to be with Annie in the middle of the night when she's awake. And I'm not sure if this applies or not but when she was in the 12 to 18 month time span she would through temper tantrums for attention both day and night. We made sure that all her needs were met(i.e. clean diaper, fed) and we provided toys for her to play with and we let her cry.She wasn't anywhere she could hurt her self and we were generally in the same room unless we had to leave for a moment. At night we did the same thing, if she cried we made sure her diaper was clean and dry and if she wasn't hungry then we let her cry. We put toys in her crib, mainly stuffed animals at first (without tags or anything that could be swallowed) and she learned to sooth her self and play. She'd fall back asleep when she was tired. It was hard to listen and see her cry, very trying at times but now when she wakes up at night she plays contently by herself with the toys we have for her to play with. Like I said I don't know if any of this will help, hope it does.

Christy - posted on 02/03/2010

We actually use Melatonin right now, it worked for the first couple weeks, but it's stopped working. The doctors said that the seizure meds should help her sleep (7mls klobazam), but im lucky to have her in bed by 8-830pm and she's up by midnight till 4-5am. If I don't give her attn, she screams murder. I swear somenights im gonna go crazy!

Crystal - posted on 02/03/2010

Tyson never required much sleep, he's on 2 different seizure meds which don't help with his sleep at all. His doctor first suggested I try Melatonin, it's an over the counter herbal sleepng aid, it worked a little at first but wore off within 2 weeks. He is now on Clonidine aswell as the seizures meds and it seems to be working somewhat, if he's having a bad night he will sleep for maybe 3 hours, on a good night and as long as he doesn't sleep for more than 2 hours during the day he will sleep anywhere between 4 and 11 hours. Talk to the doctor about the Melatonin, I would have liked it if it worked better for Tyson because it's not a medication, but no such luck with him. Good Luck, I hope this helps.

Christy - posted on 02/03/2010

The seizure meds were just uped and haven't helped her sleep. And at night she requires me if she's awake so it's taking a toll on me :(

I have a video moniter as well, and it's great!!!

Stephanie - posted on 01/28/2010

The A - Z angelman's guide can be found on the Angelman Syndrome Foundation website, look under the gifts tab. Generally if you place an order they will throw the guide in for free, at least they did when i ordered from them the first time. As far a sleeping, Annie has never slept but 3 hours maybe as much as 5 hrs when she'a not feeling well. Seizure meds help at first but when they get use to the dosage then they go back to "normal". With Annie, we put her in her room for 2 to 3 hours during the middle of the day. This is her "nap time". We put her in bed and give her blankie to her. But she also has a few toys(none that make sounds)in her room to keep her occupied if she doesn't feel like staying in bed. She's just transitioned to a toddler bed so its low enough for her to scoot out of safely. Her PCP and therapists say this is great for her because it gives her time to sleep if she chooses or just to be by herself without any outside stimulation,kinda like down time for her. And same goes for night time. We are very lucky because she doesn't require mommy or daddy to be right with her all the time. We are able to sleep at night. We have a baby monitor in her room and we'd actually like to put one of the camera/tv screen monitors in so we can actually see her. She's quite safe in her room. I would suggest trying this especially if you'd like to stay away from medicines.

Alexa - posted on 01/28/2010

I received the book from the Angelman Syndrome organization, but you can also access it online at www.angelman.org under "Stay Informed" drop down box, and you can click Angelman Syndrome from A-Z. Then you can choose the letter to the word you see and find sleep.

Angie - posted on 01/28/2010

i havent heard of the a-z angelmans book, what is it and where do i find it?

Alexa - posted on 01/28/2010

I certainly have trouble with Gabriel as well. When he was first found to have seizures, his medication helped him immensely. However, at times he does not sleep the entire evening. He is very attached to his pacifier (and obviously it drops out of his mouth as he sleeps), so I usually just get up, give it back to him and he falls back asleep. It doesn't always work and I find myself extremely sleep deprived. I'm not sure what else to do. The A-Z Angelman's books speaks to this as well, but I don't quite remember exactly what they suggest. Do you have this?

Angie - posted on 01/27/2010

my daughter does, we have to give her a medicine to sleep at night otherwise she would only sleep for maybe 1-2 hrs a night at the most and no naps during the day. the medicine is called clonidine, its suppose to be like a pill form, but our pharmacist puts in liquid form for us. she is also suppose to get it 1 time during the day (which i dont do cuz she has diff therapy's at diff times) and then at night and now she sleeps all night, but doesnt take naps. talk to your ped dr and see what he thinks. we are also doing a sleep study for children with angelman's for university of neb / monroe myer institute, the ppl there say that sleep disorders and just not sleeping are a big thing with our lil angels. if ya dont want to try meds yet, have you tried deep compression massage? olivia doesnt allow me to massage her, but her physical therapist that comes to the house and livy allows her to and sometimes that is the only way we can get livy to settle down to even participate.hope this helps talk to ya soon