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Post by laurasnowbird on Apr 24, 2006 19:04:53 GMT -5
Wish us luck guys, Ethan's sleep study is tonight. We're still trying to get to the bottom of his little episode a few weeks ago. Wish they had a computer there, and I could chat all night long, LOL!
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Post by Pat on Apr 24, 2006 20:20:19 GMT -5
Yes, you probably could chat all night, because if you're like me, I DON'T get any sleep during them LOL Hope all goes well. Pat
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Post by CC on Apr 24, 2006 21:34:03 GMT -5
LUCK Being sent your way girl. Hope it goes much better then Christopher's went YIKES he would not sleep most the night Let us know how it went. CC
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Post by wrblack on Apr 25, 2006 11:14:34 GMT -5
Good luck. Hope you'll be like me, surprised that it wasn't as bad as I thought it would be. Also hope it gives you some useful info but nothing very bad. Oh, and why don't you take your wireless laptop with the extra fast and powerful processor and great color graphic display along? I'd let you borrow mine, but I don't have one. -- Bob
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Post by momofrussell on Apr 25, 2006 11:30:43 GMT -5
Well... how did it go Laura??? We bypassed a sleep study for now... Hope yours went well!!!!! Post up when you can!! A.
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Post by laurasnowbird on Apr 25, 2006 12:44:16 GMT -5
It was an interesting experience. The doctor will call me tomorrow to discuss the results, and I'm hoping to have the results that Bob outlined, useful but not bad.
Having said that, I'd like to stress to any parent who even THINKS their child has sleep issues that they have a sleep study done. I can't say I believe strongly that Ethan has issues with sleep, we actually consider him a very good sleeper, but he has exhibited some moodiness lately, restless sleep, dry lips, and the infamous crash in the middle of the night. I will actually be more than a little surprised if it turns out he has involved issues because he sleeps so well, doesn't snore, etc.
However, today when I was looking things up post-study I ran across this article in Forbes magazine that was just published last Friday:
"High Rate of Sleep Apnea in Down Syndrome Kids 04.21.06, 12:00 AM ET
FRIDAY, April 21 (HealthDay News) -- Abnormal sleep patterns and obstructive sleep apnea affect more than half of children with Down syndrome, but parents may not know whether their children have these problems, U.S. researchers report.
Based on the findings, they also advise that all parents of youngsters with Down syndrome get their child's sleep patterns tested by polysomnography by age 3 or 4.
Researchers at the Cincinnati Children's Hospital Medical Center conducted sleep studies on 56 children with Down syndrome, ages 4 months to 63 months. The children completed overnight polysomnography, which monitors brain waves, breathing, stages of sleep, and blood oxygen levels.
The results showed that that 32 (57 percent) of the children had abnormal polysomnography results and evidence of obstructive sleep apnea. When the researchers included an elevated "arousal index" (10 or more disturbances in sleep per hour), they found that 80 percent of the children had abnormal results.
Reporting in the April Archives of Otolaryngology - Head & Neck Surgery, they also noted that rapid eye movement (REM) sleep should make up 25 percent to 30 percent of sleep time in children younger than age five. Only nine of the children in this study spent more than 25 percent of their sleep time in REM sleep, however.
As part of the study, the children's parents were asked to complete surveys about their youngsters' sleep habits. Of the 35 parents who completed surveys, 69 percent reported that their children had no sleep problems -- even though 54 percent of those parents' children had abnormal polysomnography results.
Abnormal polysomnography results were found in 36 percent of children whose parents did report sleep problems in their children.
The findings lead the Cincinnati team to recommend polysomnography testing, "in all children with Down syndrome at age three to four years.""
YIKES! That is a LOT of kids who are going undiagnosed, and the long term effects can be very dangerous, things like pulmonary hypertension and decreased life span!
I was especially struck by the fact that 69 percent of those kids' parents felt that they had no sleep issues at all, but upon testing 54 percent of those kids had sleep problems! I'm hoping not to find myself in those words.......
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Post by Chester on Apr 25, 2006 13:53:28 GMT -5
Interesting.
So, once the study is done and the Dr. reviews it. What can be done if it truly is sleep apnea?
Dawn
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Post by laurasnowbird on Apr 25, 2006 14:03:46 GMT -5
If it is obstructive sleep apnea (as opposed to central sleep apnea) it generally means a referral for removal of the tonsils and adenoids.
My oldest son (who is now 20) had his tonsils and adenoids removed, and it was a nightmare because he has very low pain tolerance. I swore that I would have to be drugged and dragged to a hospital to have it done to any of my other children.
This is a whole different kettle of fish though. We aren't talking about frequent infections that can be treated with antibiotics, we're talking about in many cases, low oxygen saturation and poor sleep which has long term harmful effects. I won't quibble at all about surgery if he has significant sleep issues.
I am a little nervous, because although I could see only one of the monitors, it was the one that registered his carbon dioxide and respirations. His respirations dropped significantly below 20/minute multiple times during the night. That is the only piece of the puzzle I could see, but it was enough to make me queasy......
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Post by Chester on Apr 25, 2006 14:09:27 GMT -5
So, if my four year old has already had his T & A removed he shouldn't need to have a sleep study....or are there other problems?
I have been questioning more about his sleep. I'm in the boat of thinking he's always been a good sleeper, but he's a taco sleeper, with dry lips in the morning, still a loud sleeper, and very very restless.
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Post by laurasnowbird on Apr 25, 2006 16:32:05 GMT -5
I wouldn't presume to make a judgement like that, I'm simply not qualified. There are other treatments for sleep apnea, T&A is just generally the first recommendation. Based on what I've read, I would have a sleep study if you feel that apnea is a possibility.
I posted a query on another list-serve I'm on that Dr. Leshin is also on, asking his opinion about the recommendation that all three to four year olds with DS have a sleep study done. I'll let you know what he says if he replies. (He usually does)
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Post by chasesmom on Apr 25, 2006 17:59:08 GMT -5
Okay Laura, I am waiting to hear the results of the sleep apnea study and keeping my fingers crossed for you guys. You know, I think Chase may still have sleep apnea so I am interested in what they could do for someone who has had adnoids and tonsils out already, unless it is simply another DS thing to have restless sleep and the taco position and those dry lips in the a.m. Chase wakes up a dozen times a night I bet and that is on meds that are strong enough to knock out a horse, poor kid. Keep us posted on Ethan and btw...I missed what you were talking about, what happened to Ethan a few weeks ago to bring this up? huggers, Robin
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Post by CC on Apr 25, 2006 19:33:18 GMT -5
LAURA, wishing you GREAT results. Here, it is part of the so called check list for all with DS it is recommended that they get a sleep study done even if the parents don' t feel there are any symptoms. Just having DS is reason enough to have the study so our Docs up here say. Which goes with what you posted so its nice to know my Docs are right on something. LOL K, just a little frustrated Doc humor on my part Chris has his study done from which they recommended the tonsils come out as his adenoids had already been removed. For him just having the tonsils out was not the answer I am not sure what we will do next as there has been discussion of further surgery for Chris but Colin and I both said NO to that for now. Actually its time we do another sleep study, we have put that off, thanks for reminding me Please post up the results as soon as you can, sending POSITIVE thoughts your way. CC ~
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Post by Jessie on Apr 25, 2006 21:02:07 GMT -5
Yes, Laura, let us know the results - we are a curious bunch here.
You know, you've opened a can of worms here with this article, it just brings up so many questions such as the ones people have already asked here. My question is, what if Jason was never tested and he is well beyond the suggested age for testing? He had his T&A a few years ago because of ear infections. I would be one of those parents that doesn't think that he has any sleeping issues, but I guess that doesn't mean too much does it!
I would be interested to know if these parents simply didn't know what the symptoms were for sleep apnea or if the children did not present with any typical symptoms, kwim??
Huh.
Jessie
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Post by poojamom on Apr 25, 2006 21:52:20 GMT -5
Pooja had her Tonsila and adenoids removed few yrs ago, But sleep apnea is something I never thought about seriously until now!! pooja is a very light sleeper, sleeps in the taco position and is restltess. I hope Iam not too late in getting one done if it is reqd.
Thx for posting about this
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Post by coopersmoma on Apr 25, 2006 22:08:10 GMT -5
Ok, here's a question!! What is the "taco position" ? I have seen this several times throughout this post and am not really sure that I have EVER heard this term. Thanks
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