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Post by mydsgirl on Feb 24, 2010 16:59:53 GMT -5
Hi, I posted this same question on the medical board but thought I might get more responses her under the general.
Emma is now 8 years old. She has had her tonsils and adenoid removed and just recently a 2 part lingual tonsillectomy. Emma will not wear a CPAP, BIPAP, or AUTOPAP mask. Her last sleep study showed that she is breathing better while sleeping. The problem is that 4 or 5 nights a week, she wakes up about every two hours. Right now she is taking melatonin and chlonidine (three times a day). The other nights she will sleep about 5 hours after initially falling asleep then up about every two hours again till approximately 3 or 4 am, then up for good.
My question is...... Have any of your children been prescribed other sleep medications that have aided in staying asleep, not just falling asleep?
Or, do you have any suggestions in how to help her stay in her bed and try and get back to sleep. At this point, Emma does not understand reasoning or bribing.
Any assistance will be greatly appreciated by this very tired mommy.
Thank you
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Post by laurasnowbird on Feb 24, 2010 17:55:51 GMT -5
Lack of sleep is the worst, isn't it? Man, when we're kids we fight it tooth and nail, and as adults, we can't get enough. Ethan is wearing his CPAP successfully, and it really wasn't that hard to get him to do it. Can you tie it to activities that she is interested in? We got Ethan to wear his by letting him watch movies and play the Wii with it on - if he took it off, we discontinued the movie or shut down the game. He got used to it, and wasn't afraid of it at all! Are you using timed released melatonin? Melatonin has a VERY short half life in the body, so if you're having trouble staying asleep, you need the time release version. We don't have issues with Ethan staying in bed during the night, he just gets up at a ridiculous hour on the weekends. We were thinking about getting this: www.mytotclock.com/home.phpIt isn't a cheap clock, but the visual might be helpful for our kids. We have had instances where Ethan has gotten out of bed multiple times a night, and it becomes habitual. We have treated it as if it were behavioral, and if he gets out of bed, he loses a privilege the next day. We let him know up front what it's going to "cost" him to disturb our sleep. We may use his Nintendo DS and tell him that if he wakes us up, he doesn't get to play his DS the next day. After a couple of days with no DS, he stays in bed until he falls back asleep. Not sure if any of this is helpful at all, but I wish you better sleep!
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Post by wrblack on Feb 24, 2010 19:10:22 GMT -5
Don't think you're the first and don't think you'll be the last to ask about Ds and sleep disturbance. Snowbird may be on to something about the timed released version of melatonin. Think I remember Dr. Leshin saying something about regular melatonin helps in falling to sleep but the timed released version, which shouldn't be crushed, is what's called for if the problem is staying asleep. Actually quite a few medical studies dating back more than 10 years documenting that in addition to OSA kids with Ds have restless, fragmented sleep. Nice to know but not that helpful. Oh, and I'm no help either. Charlie usually gets 3 mg of melatonin, regular kind, crushed up in applesauce about 20 minutes before bedtime. Doctors tell us it doesn't work that fast. Maybe, but works for us. He rarely wakes in the middle of the night. And when he does, being bad daddy that I am, I don't take away his Nintendo, he doesn't have one, I'd take his little brother's DS and give it to Charlie if that would help. But, no, I just gather him up and take him to bed with me. Charlie doesn't kick and squirm near as much as his little bro. Other thing I would suggest is that you consider going cold turkey for a while. There have been a couple of occasions where the melatonin did not seem to be working any more. So, we just stopped it for a couple of weeks and then gave it another try. Think there's some literature that suggest, at least with the melatonin, sometimes helpful to just take a break for a period of time. Don't know about the clonidine. There is also an extended release version of clonidine, called Clonicel. You might check with you doctors, ask what he, she, they think about stopping meds for couple of weeks, then switching to timed release version of one or both. 'Course, you might not want to go sleepless for two weeks. But if it's a matter of just two weeks more and then hope for a break, then why not give it a shot? Oh, think the literature also suggests that this sleep disturbance thing may be at its worse in school age kids. So maybe it'll get better some day, some year. Can you sleep in shifts for the next 2, 4, 6, 8 years? Any case, good luck, and make sure your Emma stays safe in all this waking. -- Bob
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Post by laurasnowbird on Feb 24, 2010 20:26:32 GMT -5
Oooooo, lucky you, Bob, if Charlie is not a kicker. I've been BRUISED by Ethan's kicks - he's a strong little stinker. Although, gotta say, that bothers me less than when he settles himself between Rod and I, and depending on which direction he's facing, plants his feet on one of our backsides and slowly pushes until we fall out of bed, LOL!
We were getting pretty lax about it at one point, which is when the nighttime visits became habitual. We pretty much allowed it to get totally out of hand, and it started to take a toll on his school work because he takes his CPAP off to climb into our bed and he gets crummy sleep there. Matter of fact, we ALL get crummy sleep.
We're real loose about it anytime after about 6:30, and often end up with all THREE kids in bed with us on a weekend morning. But that's one of the best parts of having kids. And I swear the funniest things they ever say come out of them when they're in our bed!
I hadn't heard the thing about melatonin not working after awhile, but I've heard it said about a lot of other medications, so it makes sense.
I just ordered the Tot Clock - I'll let you guys know if it works!
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Post by Pat on Feb 26, 2010 22:31:06 GMT -5
This is a piece of Carolyn's post: "I finally got John into see a developmental ped. at University of Michigan. One of her specialties is sleep disorders. While we wait for him to get into the sleep clinic here, she tested his blood to check for low ferritan levels, which is related to the way iron is able to be used in the body. His iron levels aren't too bad, but his ferratin is really low, so she put him on a liquid iron supplement. It tastes terrible, even though we had CVS flavor it. However, he takes it every night, and for the first time in years and years, he sleeps all night, in his bed. When I wake him in the morning he is in the same spot I left him, under his blankets. The bed no long looks like it has been ransacked. It is a miracle. He is so much more rested, and as a result has an easier time falling asleep."
I have to get John-John's levels checked... I could use a good night's sleep. Actually, I had it added to his blood test, I just have to get the blood test taken. Pat
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Post by Googsmom aka Jennifer on Feb 27, 2010 23:18:11 GMT -5
Oh that Ferratin. Thank goodness Carolyn mentioned that to me. Ever sence Brook had her levels checked, they were low btw, and started her liquid iron and vit c, omgoodness, different kid here. She will sleep all through the night, most nights, and so will mom Something to check if you haven't. {{{{HUGS}}}}}}
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Post by carolyn on Mar 1, 2010 10:05:40 GMT -5
Jennifer and others: Isn't that ferratin thing just amazing? John has had months now of much better sleep, sleeping more peacefully and all night. This is a simple blood test and an easy thing to try for all of you with restless sleepers! True thanks goes out to Dr. Felt at University of Michigan for suggesting this.
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Post by kellied on Mar 1, 2010 13:57:08 GMT -5
So is Ferratin different than Ferrous Fumarate? Is it a different kind of iron? My son is on Ferrous Fumarate and while I think he sleeps more restfully, he is still not sleeping through the night.
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Post by carolyn on Mar 1, 2010 14:14:09 GMT -5
I'm pretty sure ferrous fumarate is something different. Ferritin is a protein that acts as a binding agent with iron. Your doctor has to check specifically for ferritin when checking iron levels. My son is not anemic, but his ferritin is very low. The treatment is to take regular iron supplements for a relatively short amount of time until the levels come up to an acceptable level. Hope this helps.
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Post by Chris too on Mar 1, 2010 20:42:00 GMT -5
Wow! Hope for the restless sleeper I will remember this - Stevie has been waking more frequently lately Jen, I love the new pic of Brooker in piggy tails
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Post by damarasmom on Mar 3, 2010 16:18:07 GMT -5
WOW, this Ferritin thing is new to me...I need to have peanut checked for this...we are in process of clearing her sinus' to rule that out, then will have sleep study done...she is falling asleep at school, yet goes to bed at 7:30 everynight! We can't figure this out! Gotta ck into this new issue...thanks everyone!
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