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Post by hannahph on Jan 3, 2007 20:31:28 GMT -5
Today we got Hannah's sleep study results back, just as I expected. Hannah has moderate to severe sleep apnea. She stops breathing an average of 11 times and hour with the apnea episodes lasting up to 23 seconds at a time.She also wakes at least eight times an hour and never reached REM sleep. So since she has already had T&A surgery they are suggesting CPAP. My husband has one and HATES it. Has anyone had any luck with their kids tolerating one? I can't imagine this is going to work but we are kind of out of options.
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Post by wrblack on Jan 5, 2007 11:14:10 GMT -5
Fortunately for us, Charlie's T&A appears to have resolved his moderate obstructive sleep apnea. So, no help here, we've no experience with CPAP.
But a year or more ago a mom and a doctor presented at local support group. Maybe I could dig up name of mom and see if she's susceptible to email if you really wanted. Her daughter, maybe around age 10, really need to go the CPAP route. Mom thought no chance. Worked with this pulmonologist, runs local sleep lab but not a pediatric specialist, got the right equipment, right fitting mask, introduced properly, worked with the girl at comfortable pace. Turned out great, all happy campers.
So, second or third hand info, but, yes, some people have very good luck with CPAP. Just needs to be done right. -- Bob
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Post by justinsmom on Jan 5, 2007 12:08:50 GMT -5
Sorry but I'm in the same boat, our oldest just got diagnosed with Sleep Apnea and got her CPAP she's 14 and non DS and we still can't get her to use it GRRRRRRRRR. My dad has one too but his is sitting in his closet double GRRRRRRRRRR. The prongs for the nose hurt the mask won't stay put, she would wake up with it on her forehead. We are still trying out different masks and different size nose pieces, there has to be an easier way other. We've tried the stuff to keep the nose moist, her CPAP has a control to regulate the temp of the air or humidity.
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Post by cindylou on Jan 5, 2007 17:37:32 GMT -5
THis will sound bizarre but I found a website with some natural remedies to sleep apnea symptoms and it seemed to involve a lot of excercises with the mouth and jaw. I shall try to find that again and post it up--
who knows...don't you think people have been living with sleep apnea for years and not been dropping dead all over the place from it?
I do think it affects Kaylee's learning and physical growth to not get adequate REM sleep. Considering a shot of Jack Daniels to get her to REM...any opinions on that???
just kidding-
cindy
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Post by Becky on Jan 6, 2007 20:42:39 GMT -5
Justin had severe apne he was having 64 apnea episodes an hour, he had major surgery for it and now has no apnea at all, if you would like more info please feel free to IM me, the CPAP did not help Justin there for we went with the surgerys
Becky
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Post by momofrussell on Jan 9, 2007 8:17:21 GMT -5
Heather... how is the cpap stuff going? Did you get one yet?
A.
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Post by hannahph on Jan 31, 2007 12:50:12 GMT -5
Sorry I didn't respomd sooner. Our computer bit the dust so not much time online right now. Anyway we are not able to get into the specialist until March so we are in a holding pattern.
Becky- our ENT was not wild about surgery in kids and her apnea seems more of a quality of life thing right now rather that life threatening. Was his surgery awful? Everything I have read about it seems so invasive and painful.
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Post by Becky on Feb 1, 2007 13:11:07 GMT -5
I sent you a PM about Justins surgery.
Becky
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Post by Renee' on Feb 2, 2007 10:52:14 GMT -5
Becky
Can you PM it to me too. Lauren has it still. We have not had a sleep study but I sleep with her on occasion and she stops breathing several times. She had her Toncils and Adinoids removed already. She doesn't get much good quality sleep.
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Post by hannahph on Feb 2, 2007 14:47:12 GMT -5
Renee, you may want to request a sleep study. Our Dr says that 60% of kids with DS have apnea and many go undiagnosed. For Hannah her oxygen sats don't drop much so it is not causing heart damage but she falls alseep in school and is a bear all the time because she is exhausted. Now that I know she has apnea, a lot of the behaviours make sense. You never know , maybe they can help Lauren.
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Post by Renee' on Feb 2, 2007 23:35:40 GMT -5
I will have to ask her doctor about it. He wouldn't give her the sleep medication I asked him about because of her heart. I know she has sleep apnea. I am a Respiratory Therapist and let me tell you she still saws logs and stops breathing. Her behavior has been horrible for a while. She doesn't sleep well.
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Post by samanthajosmom_12 on Mar 2, 2007 6:32:41 GMT -5
i my self have a cpap. some night i love it and other nights i hate. sammy jo has to go back to childrens in june for another sleep study to discuss the day that she will start using the cpap. she knows i wear that mask and i sometimes if she is still up let her try to help me put it on before i go to bed so she will be used to what it is for. good luck. sue
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Post by chasesmom on Mar 3, 2007 11:15:57 GMT -5
I just started reading this thread guys..... they are checking Chase for sleep apnea. He had it severely before he had his T&A back when he was 8 and I made the mistake of ASSUMING that made it all better. He is having symptoms the dr thinks could be related to sleep apnea/ lack of oxygen. His feet and hands are turning purple as well as his lips on occasion so we are scheduled to have a company come in and set us up for an all night pulse ox (sounds like a sleepness night to me) as I am freaking out and wondering what in the world I havent been noticing. He has a few more symptoms but my question is this....there is no way in the world Chase aka president of the stinkers club of unomas would ever wear a cpap so what is the surgery you are talking about and what does it consist of and how dangerous is it and what does it do? Becky, Justin had it? Was it successful? I am just covering my bases so I am not blindsided again and feeling like one stupid mom. Thanks for any info guys
hugs, Robin
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Post by hannahph on Mar 4, 2007 13:23:02 GMT -5
Hannah was fitted for her CPAP a couple of days ago. What they are having us di is to take the mask home and gradually desensitize her to wearing it. Things like trying a few minutes at a time in front of the tv and work up to trying it in bed. Then in April we go back for another sleep study where they will actually hook it up and adjust the air pressure. I think it has to be a gradual thing.
Robin, as far as surgery goes, I know it works for some but it is incredibly invasive and Hannah's Dr's would not even consider doing it at this age.CPAP is short for continuous postitive airway pressure. It is a mask of sorts that goes over the nose and sometimes mouth-hooked up to an air tube. The tube is hooked to a machine that blows the air through it keeping the airways open.
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Post by chasesmom on Mar 7, 2007 20:18:43 GMT -5
Thank you for the info Heather, I appreciate it. I think the desensitizing is a great idea with the mask. It sounds like a big oxygen mask type thing only not just little tubes for your nose, am I right? I guess if it is needed, I will find a way to make it work for the Chaseman. You know, that stubborn streak of his isnt ALL from his DS:D
take care, Robin
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jackie
