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Post by laurasnowbird on Apr 26, 2006 5:10:59 GMT -5
I only have a moment, but I wanted to post Dr. Leshin's reply. I asked: I'm wondering what you think of this study Dr. Len, and their recommendation that all kids with DS have a sleep study done between three and four years of age? His reply (reprinted with permission ;D: "I normally don't like to comment on papers I haven't read, but the lead author is Dr Sally Shott of Cincinnatti who I think is one of the foremost authorities on ENT issues in children with DS. I have always thought that apnea was underreported in DS, but I don't know if getting a sleep study on every child is cost effective. I'm wondering if there could be some way to do a screen before going on to the sleep study." Down Syndrome: Health Issues www.ds-health.com |
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Post by cmedrano99 on Apr 26, 2006 7:13:14 GMT -5
ok,,here my take on SA.... take it either way you want. All 3 of my kids, yes have DS and had sleep apena as babies...sure they all need it redone at some point. Mabey this summer.
Courtney 12yr.. Does not sleep with out meds... first clue for me.. even with meds.. she very cranky girl some days. Behavior is ONE thing to look at. Dry lips... that mean mouth open sleeping.... Dayton who is my great sleeper... but on heavy duty meds, he 'hates' and will'bang head' on the doors for hours.. so.. he now sleeps easy.. but like his sister.. they both taco sleep.. means they sit straight up and lay down between there legs and sleep. taco postion! As both where younger and OSA was there problem and we did T&A... Courtney fixed at the time.. Dayton, still had central.. so we did oxygen for another year. Then come along Joshua... who had nearly every issues we been there done and much more. He was on oxygen for his CSA and OSA... Lungs,Airway and Heart .. had all those fix and T&A... a few months after the Reconstruction airway was done.. finally off oxygen... now he a great sleeper... the only time he moves,when ear infection kicking in or feels bad...
So, my thoughts.. every child with DS, should have sleep study by 5yr... and then if you do..means you caught it early... Unless there reason to do before hand...Also, I truely think having it done every 5 yrs... has it benfits. You never KNOW when or IF those T&A will grow back.. Courtney tonsils are slowly growing back now.
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Post by Chester on Apr 26, 2006 8:04:52 GMT -5
Thanks for posting the Dr's reply Laura and sharing your experiences. It is something that I'm going to bring up at our next ENT/Dr appointment.
Keep us posted on your little guy!
Dawn
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Post by laurasnowbird on Apr 26, 2006 9:00:09 GMT -5
Robin:
I woke a few weeks ago to thumping and bumping in Ethan's room (I still have a monitor in there, and never hear a peep from him) so I was running toward his room when I heard a crash. When I got in the room, he was halfway to the door, trying to get up but couldn't. He was crying and very scared, and clutched my neck so hard I thought he'd break it. The kid was stuck to me like an octopus. I took him in the living room, got a flashlight, checked to see if his pupils were responsive, and they were fine. Asked him if he wanted to watch Batman, and he started talking away about Batman. Cognitively he was all there, but for a good twenty minutes, when we put him down to try to walk he would tip over and fall. Just could NOT walk. The on-call pediatrician felt we should do a CT scan, but I told his regular ped that I would rather rule out everything else before we resorted to that, because he would need to be anesthetized, and because he's already had lots of radiation exposure. I mentioned what I had recently been observing, the restless sleep, occasional taco sleeping, dry lips and daytime irritability. She agreed that a sleep study would be a better place to start.
As far as Chase's behaviors, if it were me, I would have a sleep study done, for the simple reason that sleep can have such a significant impact on behaviors. Tonsils and adenoids can grow back, and even if they are not the issue, there are other treatment methods for apnea if it is a problem.
Christie and I were talking about this last night, and there's a common misconception that kids with sleep apnea will exhibit daytime sleepiness. From Dr. Len's site:
Symptoms of Obstructive Sleep Apnea (OSA) are: snoring, restless/disturbed sleep, frequent partial or total wakenings and daytime mouth breathing. Some children with OSA have odd sleep positions, often with their neck bent backwards, or even in a sitting position. Some children with OSA sweat profusely during sleep. In adults, there is an association of obesity, but that's not a common association in children. Some children will have daytime grumpiness or sleepiness, but it's not common(emphasis added). Some children may have noisy swallowing as well."
Its never too late to treat sleep apnea! When we went for Ethan's sleep study there were several adults in their 60's who where there for sleep studies. Ethan has never snored, but one of the people in an adjacent room snored so loud I could hear him through the sound-proofed walls, LOL. Wouldn't want to be sleeping next to him....
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Post by laurasnowbird on Apr 26, 2006 12:36:49 GMT -5
Hey Robin, I did some more looking and found this on the American Academy of Family Physician site, here are some things that pertain to older kids and some specific comments about hyperactivity: "Sleep-disordered breathing in children is a timely public health concern, given the increasing rates of obesity and hyperactivity in this population. As demonstrated in one study,5 a large percentage of children with hyperactivity or inattentive behaviors had underlying sleep-disordered breathing. These children would be cared for more effectively with appropriate recognition and treatment of sleep-disordered breathing than with the use of stimulant medications." "Children five years and older commonly exhibit enuresis, behavior problems, deficient attention span, and failure to thrive, in addition to snoring" Here's a link to the whole article: www.aafp.org/afp/20040301/1147.htmlfrom Pediatrics: "Children with SDB (sleep disordered breathing) had significantly higher odds of elevated problem scores in the following domains: externalizing, hyperactive, emotional lability, oppositional, aggressive, internalizing, somatic complaints, and social problems. Conclusions. Children with relatively mild SDB, ranging from primary snoring to OSA (obstructive sleep apnea), have a higher prevalence of problem behaviors, with the strongest, most consistent associations for externalizing, hyperactive-type behaviors. " Anyway, there is lots of information out there related to OSA and behavioral problems. Seems it is relatively recent that they are figuring out the impact of sleep disturbance on behaviors. If you want me to look more, I'd be happy to. |
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Post by Becky on Apr 26, 2006 12:58:07 GMT -5
Justin had his T & A out for his obstructive sleep apnea, it did not help at all so he had two other surgerys to fix it, the second one they went in and micro waved the back of his tonuge to make scares so when it heald it would retract the tongue from the back of his throat, that didnt work so the thrid and last surgery they went in and cut off two inches of his tonuge, that fixed it, he went from 63 apneas a hour to none,and really started talking and now eats everything in site before he could not chew anything due to alwasy bitting his tonuge, if you want more details you can im me and Ill tell all,
Becky
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Post by laurasnowbird on Apr 26, 2006 14:06:45 GMT -5
Wow, Becky that is pretty involved! I'm so glad that your doctors were able to find a solution that worked for Justin. Sounds like it added to his quality of life all around!
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Post by CC on Apr 26, 2006 20:16:31 GMT -5
LAURA girl THANK You for bringing this up, as you have gotten me motivated to follow up more on this for Chris as I was supposed to. I was told he has sleep apena and we had the tonsils removed as suggested, which I think I already said didn't make a difference for Chris. We were to follow up and with all the other issues put this on the back burner. So THANKS girl for reminding that I need to get my butt in gear and follow up  Did you hear bout the results of the test today?? BTW "Ms. Dare-Devil" LOL was really great chatting with you last night CC ~ |
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Post by laurasnowbird on Apr 27, 2006 8:01:54 GMT -5
CC - Hi! I enjoyed our chat as well! Don't be outing me on my Dare Devil stuff, K?
(Guess that makes us CC and DD, LOL!)
Doc just called, feeling bad because he didn't get an opportunity yesterday. The news was good but surprising. Remember I was in the camp of parents who thinks their child sleeps really well!
Ethan has moderate sleep apnea, and was experiencing almost three episodes per hour. Not exactly restful sleep. The good news is that his oxygen saturation was not dropping way down with the episodes, so we have some time to carefully consider what we want to do. The weird thing is that during some of his episdoes his chest wall still moves, trying to draw air in, but the airway is obstructed. So if you had your hand on his back, you'd feel it moving up and down, but he really wasn't breathing. That was what I noticed the night he spent in my bed after the crash. It looked like he was barely breathing, and when I put my finger under his nose, I couldn't feel anything, but thought maybe I was imagining it.
We will be scheduling an appointment with his ENT to discuss the results and our options and get his recommendations. I really like our ENT, so I'm feeling good about that.
It is still startling to me that he could be having sleep apnea when he's such a good sleeper and doesn't snore AT ALL. Weird. If anyone else has a concern that their child might have apnea I would definitely encourage a conversation with your child's doctor, and maybe take a copy of the Forbes article above so they have an understanding how prevalent this condition is in our kids. Anyway, thanks for all the thoughts, prayers and well wishes. They obviously worked since we aren't dealing with a severe case, LOL!
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Post by Chester on Apr 27, 2006 9:49:43 GMT -5
I'm so glad you started this thread!
I will be making a hard copy of the article and bringing it along with me to the next Dr. visit!
Glad to hear that it wasn't totally awful news with your little guy! Keep us posted!
Dawn
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Post by brocksmommy on Apr 28, 2006 18:13:04 GMT -5
i'm with cooper's mom. taco position?
my other question is do our kids have to be a certian age for this study? my little man is 3mo. is he too young?
Hope
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Post by laurasnowbird on Apr 28, 2006 21:15:38 GMT -5
Cynthia explained it pretty well, it's when the kids are sitting up, then just kind of fold over with their face down (between their knees). Taken by itself, taco sleeping isn't a sure sign of sleep apnea. Some kids just do it because they can!
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Post by chasesmom on Apr 30, 2006 12:51:59 GMT -5
Hmmmm Laura.....what you described as sleep apnea I thought was just DS traits. Now I am really worried as he has all of the symptoms and am I dumb or what cause I always thought all of our kids were mouth breathers. He takes enough medicine to knock out a horse and yet wakes up often (as evidenced by his room in the a.m.) so as soon as possible I am going to have to get him in to see the dr so the next question is this.....should I go with his ped or his ENT for getting this taken care of?  And btw Laura, any and all info would be appreciated. Wow, I am just really surprised and I think it is time to put a monitor back into his room. Thank you guys for all your help!!!!! Hugs, Robin |
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