Guest guest Posted August 17, 2006 Report Share Posted August 17, 2006 Oh, joy! I am so looking forward to tomorrow night. I'm sure I'll sleep well for them with all the wires and knowing they're looking at me. If they need me back for the 2nd visit, that will be next Thursday. Mine at at an office rather than the hospital. I guess I should check out their web site and see if they show the rooms or anything. De (what do you need a uvula for, anyway?) > > From: " Allan W Anger Jr " <allananger@...> > Date: 2006/08/17 Thu AM 10:32:14 EDT > <Hepatitis CSupportGroupForDummies > > Subject: Re: sleep apnea > > Hi De, > > They hook you up with a bazillion sensor wires like the kind they use for an EKG. It takes almost an hour to get hooked up. These are connected to a computer. They also have a camera on you. Don't be afraid to ask for extra pillows and blankets. I froze my butt off at the hospital study. I can't stay in one position all night so I moved a lot and the dang wires kept coming off. When they did the nurse would come in and flip on all the fluorescent lights HELLO! Probably why I never got to REM sleep. > > With the in-home study they used the same wires that go into a fiber optic cable that ran downstairs to the living room to a laptop where the technician sat all night. That study was conclusive and showed I stopped breathing 18 times per hour. I wouldn't go for the CPAP machine and opted instead for the surgery. It made a MAJOR difference in my sleep and my breathing. > > Good Luck! > > Allan with 2 L's but no Uvula Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2006 Report Share Posted August 17, 2006 Kim, My brother got his CPAP on-line, I'm not sure whether it was E-Bay or some other place. His wife loves it - no more snoring!!! He says he feels a lot better now, getting to sleep through the night he isn't so tired in the morning. A friend's husband also has apnea. He had the CPAP for years but had surgery four years ago & now sleeps normally. The surgery is not guaranteed to work but when it does it's great. I guess I'd better get tested, I have alot of the symptoms - don't know if I snore, SpYke hasn't complained. SuZie Next time I'm coming back as a cat sleep apnea I have apnea too. I went through one study. They said I wake up one time every 59 seconds. I'm sure that adds to the extreme fatigue. The next study I went to, they put me on a CPAP with a humidifier. My cost,after insurance pays is $650. I told them to keep it. I don't really want to wear that mask all night long. I have lost 27 pounds since the end of April and the kids say that most nights Idon't snore as much anymore--only when I am really exhausted. I may end up getting that machine, but for now, I need to concentrate on keeping the diabetes and cholesterol under control and starting tx. That's enough for now. FYI--the sleep study tech told me to look on Ebay, sometimes you can find a machine there for much cheaper. You just have to make sure that it is exactly what your doctor ordered. Bye for now, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2006 Report Share Posted August 17, 2006 LOL Beats me what you need a uvula for other than maybe a gag reflex. I didn't install it so I guess you'd have to ask the guy that put it there. As to Labor Day weekend I have Microsoft Streets & Trips and I've already got the map and directions. What time is good for you for my arrival? LL Re: sleep apnea> > Hi De,> > They hook you up with a bazillion sensor wires like the kind they use for an EKG. It takes almost an hour to get hooked up. These are connected to a computer. They also have a camera on you. Don't be afraid to ask for extra pillows and blankets. I froze my butt off at the hospital study. I can't stay in one position all night so I moved a lot and the dang wires kept coming off. When they did the nurse would come in and flip on all the fluorescent lights HELLO! Probably why I never got to REM sleep.> > With the in-home study they used the same wires that go into a fiber optic cable that ran downstairs to the living room to a laptop where the technician sat all night. That study was conclusive and showed I stopped breathing 18 times per hour. I wouldn't go for the CPAP machine and opted instead for the surgery. It made a MAJOR difference in my sleep and my breathing.> > Good Luck!> > Allan with 2 L's but no Uvula Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 He already started me on some samples of Requip for the RLS. It’s actually better already. I’m playing with the dose to see what’s best right now. He took me off the elavil though saying it can cause some of the jerkiness and leg movement. The elavil was helping me asleep & with my migraines. Be thinking of me all hooked up to the machines in my “hotel-like” room while you can’t sleep tonight. De Re: sleep apnea SuZiE and , Sleep Apnea...I don't think it's taken seriously enough...yet! Y was dignosed with it when I took all the other test's for TP. I asked the doc, (sleep man) why it is that everyone thinks it's a joke...I did too! It's because jokingly people wouls refer to snoring, suck the wall paper off the wall snoring, as a joke. Family get togethers?? OOOhhh NOOOO! Don't sleep with Uncle Willie, you'll never get to sllep!! Laughter..thgen off to bed. Not only does SA affect your rest, because you never go in to Deep Sleep, because you are waking yourself up, either by sound, or the lack of AIR!! I just used to think I was having a bad dream when I sat up in bed and gasping, trying to get air into me, and would say, Man...that must have been a doozy!!! I have others tell me that somtimes I would go a minute,or more, without moving, or breathing, and then I wouold pop up and do my thing. When this happens, not only does the brain not get enough oxygen, but all of other organsns, muscles, EVERYTHING, is suffocating too! My doc (sleep man), said my problems today may have been avoided or slowed down alot, if I had been dx'd long ago. SuZiE,,, I have a CPAP, but have trouble keeping on my face when sleeping. I rip it off in the night. Does your brother like his? I have quit trying, but I sure would like to awake rested, even if I look like and Air Force Pilot. But...there may be some fun with that,too! ...you night dancer!!!! When I'am about to drift off I do a double check (mentally).... ( normally with Captain Kirk or Mr. Spock.... Bones thinks it's a cure or txis a newfangled gimmick still). Actually it's form of hypnosis. When I get down to my belly and then go lower, I realize my butt cheeks are so tense you couldn't get them open with a crowbar!! (some say that is natural defensive thing that happens in prison...I dunno').Then I realize my calves are all tense and my feet are doing a jig! I think this may be The dreaded dancing legs syndrome. If you find anything out please let me know, if not, let's find a place halfway with a town that never sleeps and dance all night!!! Del Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 Hey Del, thanks for the offer but I think I'll pass. I relly don't want to wear that mask all night. I get so closterphobic (sp?) over things, I really don't think I sleep that much better with or without the machine. New enrollment for my insurance is in October, 2 months from now. I plan on "buying up", and making my deductible lower. Then I will go back to the sleep doc, and check out the surgery option. I have enough wrong with me, I can't deal with anymore right now. REALLY!! I have RLS too. I take Requip--also given to pts. with Parkinson's Disease. I thought I would stop taking it because it is expensive and I didn't see where it did anything. I missed a few nights and could tell the difference, I woke up with leg cramps all night, and my legs hurt the next day, after not taking the medicine, all day. So, I will defintely continue to take that. Hope everyone is well. Peace and love, Kim Scars are souveniers you never lose. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2006 Report Share Posted September 28, 2006 I talked to about taking part in a ZapChat. He said he would be glad to... but nor right away. We are working to get his new book ready for launch, tweaking his website... and both getting ready for big trips. (he to Asia and me to San Francisco area) When? Most likely in early November. We'll let you know precise date. That session will be limited to ONLY sleep disorders.. especially Apnea. Stay tuned and well! Duffey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2006 Report Share Posted December 9, 2006 My son has severe sleep apnea also. We've spent a year now, trying to get him to wear the CPAP....to no avail. When he has worn it, there is a definite difference in his ability to function during the day. We've tried writing a social story about sleep apnea, what happens when you have it, why the CPAP helps, how he feels about wearing it, why Mom worries so much when he doesn't wear it, etc. We tried several different " masks " , with the most successful one being " the pillows " .....a rubber tube that sits on the upper lip with an extention in each nostril. This one only has two straps on the head.....other devices had as many as five, which created a sweat-soaked head for in the a.m.!! has an aversion to the machine also....so much so that he gets really tearful when we talk about using it. We're going backwards next....we're going to the ENT to check out the throat structures to see if anything needs to be removed surgically. This should have been done first, before getting the CPAP......... I'd suggest using a social story with your daughter to try to change her thinking about the CPAP......but you also might try different " " masks " .....there is also one that is relatively new that is more like a nasal canula that you wear in the hospital. Medicaid would only pay for one every 3 months.....and the masks (or apparatus) are rather costly (starting at $75.) So check with your doctor.....or go to the company that services your CPAP machine....they will have the different masks to try on your daughter. Just a few thoughts! Good luck! Reggie in West Virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2006 Report Share Posted December 9, 2006 Thanks Sue! I printed the info on the Cine MRI and will send a copy to na's ENT......I just cannot believe how little is done for kids with Sleep apnea. We have been given such a run-around about this. 3 different sleep studies and 3 different opinions! Just does not make sense they let this go! My daughter has a different duplication of chromosome...on #9, but she still have many of the same issues as Trisomy 21 kiddo's. I think getting right to the cause is necessary instead of playing anymore guessing games and cutting on my daughter! Thanks, Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2006 Report Share Posted December 9, 2006 Hi, We saw an ENT at Cincinnati Children's Hospital and had a sleep study done. It was determined that had severe sleep apnea. The next morning he was sedated for an MRI and the MRI results showed huge lingual tonsils closing off throat when relaxed during sleep. A couple months later they called and the team recommended surgery to remove these tonsils (of which I had never heard of before) that are seated in throat at base of tongue. They called on a Friday and wanted to schedule on Monday. Then, we would go back for another sleep study to determine if a c-pap would still be necessary. To date we've done neither. has never done well with surgery. He fights them, us, and makes things so much more difficult for himself and us. He won't let you help him. It scares me out of my mind. We would have a hour drive coming home after surgery and should anything happen during recovery at home we would be 45 minutes from hospital. Last month we saw a sleep doc in our area and are waiting for him to schedule a sleep study for to guage adequate pressure for a cpap. I've called back to check and see why we are still waiting and was told the doctor will call us when he reads his file. My gut tells me that I should've went back to Cincy. We can still take him there to get this done. We'll probably end up back there after school goes out. Barb mom to (13)ds and Tyler (11) Sleep Apnea jacksonsmom99@... Hi, Anyone else on this list dealing with Obstructive Sleep Apnea?? My oldest is fighting her CPAP machine like craaaaaaaaaaazy! She says she cannot breath with it on. She has severe obstructive apnea. Needless to say, she's a zombie in the daytime. We are thinking about another surgery. I hear there is a procedure called a " cine MRI " ....to watch the airway while a child sleeps?? Thanks for any help! Laurie --------------------------------- Check out the all-new beta - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2006 Report Share Posted December 9, 2006 has used the C Pap machine for almost three years and has done well with it. He still has tonsils and the sleep apnea has greatly improved. Good luck and we will praying for all of you. Dad to , Kristi, (all three Down syndrome) and (Cri du chat) Husband to C. in Mo. Uncle Daddy to and in Calif. (both Down syndrome and is recuperating from a successful TNA) Barbara Dillon <cbbtdillon@...> wrote: Hi, We saw an ENT at Cincinnati Children's Hospital and had a sleep study done. It was determined that had severe sleep apnea. The next morning he was sedated for an MRI and the MRI results showed huge lingual tonsils closing off throat when relaxed during sleep. A couple months later they called and the team recommended surgery to remove these tonsils (of which I had never heard of before) that are seated in throat at base of tongue. They called on a Friday and wanted to schedule on Monday. Then, we would go back for another sleep study to determine if a c-pap would still be necessary. To date we've done neither. has never done well with surgery. He fights them, us, and makes things so much more difficult for himself and us. He won't let you help him. It scares me out of my mind. We would have a hour drive coming home after surgery and should anything happen during recovery at home we would be 45 minutes from hospital. Last month we saw a sleep doc in our area and are waiting for him to schedule a sleep study for to guage adequate pressure for a cpap. I've called back to check and see why we are still waiting and was told the doctor will call us when he reads his file. My gut tells me that I should've went back to Cincy. We can still take him there to get this done. We'll probably end up back there after school goes out. Barb mom to (13)ds and Tyler (11) Sleep Apnea jacksonsmom99@... Hi, Anyone else on this list dealing with Obstructive Sleep Apnea?? My oldest is fighting her CPAP machine like craaaaaaaaaaazy! She says she cannot breath with it on. She has severe obstructive apnea. Needless to say, she's a zombie in the daytime. We are thinking about another surgery. I hear there is a procedure called a " cine MRI " ....to watch the airway while a child sleeps?? Thanks for any help! Laurie --------------------------------- Check out the all-new beta - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2006 Report Share Posted December 9, 2006 Hi Jayne, The cine MRI was developed, to my understanding, at Cincinnati Children's Down Syndrome Clinic. I know I found a medical abstract on it, forwarded it to St. Louis Children's Hospital's ENT for the DS Clinic. He even flew out to Cin. to be trained in the procedure! This protocol is supposed to be more accurate for our kids with DS. Best of luck!! Thank God that Karrie's central sleep apnea was caused by the meds she was on. Trying to put a bi-pap on her and keep it on was a nightmare!! Sue mom to Kate 17 and Karrie 10 w/ds and mild autism ---- Jayne Hickey <jacksonsmom99@...> wrote: ============= TRIER9@... wrote: From: TRIER9@... Date: Fri, 8 Dec 2006 16:21:06 EST Subject: Sleep Apnea jacksonsmom99@... Hi, Anyone else on this list dealing with Obstructive Sleep Apnea?? My oldest is fighting her CPAP machine like craaaaaaaaaaazy! She says she cannot breath with it on. She has severe obstructive apnea. Needless to say, she's a zombie in the daytime. We are thinking about another surgery. I hear there is a procedure called a " cine MRI " ....to watch the airway while a child sleeps?? Thanks for any help! Laurie --------------------------------- Check out the all-new beta - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2006 Report Share Posted December 9, 2006 In a message dated 12/8/2006 10:44:54 PM Eastern Standard Time, jacksonsmom99@... writes: Thanks for any help! Hi Laurie, i don't know if this will help or not. My Micah has sleep apnea. Had tonsils and adenoids out but is now going for another sleep study because he still has problems. My pulmonologist said that instead of using a c-pap machine with him (if necessary) they may give him a dose of singulair each night before bed. They have found this helps with obstructive sleep apnea. This is amazing to me and I guess a relatively new finding. I don't know if anyone else has heard of this. Unfortunately he has not had his sleep study done yet. Was suppose to go next week but hubby needs surgery so we will postpone it until after the first of the year. Perhaps you could question your pulmonologist about it. Hope this is helpful. Loree Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2006 Report Share Posted December 9, 2006 In a message dated 12/9/2006 10:37:45 A.M. Pacific Standard Time, Loree5@... writes: singulair each night Hi Loree......singulair?? What is that used for? I know I have heard the name! Thanks! Laurie Mom to na w/Trisomy 9p and Kayla w/Trisomy 21 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2006 Report Share Posted December 10, 2006 In a message dated 12/9/2006 4:03:59 A.M. Pacific Standard Time, cbbtdillon@... writes: We saw an ENT at Cincinnati Children's Hospital and had a sleep study done. It was determined that had severe sleep apnea. The next morning Hi Barb! Did see Dr. Shott?? Thanks, Laurie Mom to Bri w/Trisomy 9p and Kayla w/Trisomy 21 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2006 Report Share Posted December 10, 2006 Hi Laurie and sorry for responding so late. Our entire family is sick. I was hoping I would escape but it was not to be. Yes, we saw Dr. Shott. had an exam and a hearing test done. Afterwards we had the sleep study. Next morning the MRI. Then it's home to wait on results. When you call they will set everything up. Everyone was very nice and helpful. They take care of everyting. Barb mom to 13ds and Tyler 11 Re: Sleep Apnea In a message dated 12/9/2006 4:03:59 A.M. Pacific Standard Time, cbbtdillon@... writes: We saw an ENT at Cincinnati Children's Hospital and had a sleep study done. It was determined that had severe sleep apnea. The next morning Hi Barb! Did see Dr. Shott?? Thanks, Laurie Mom to Bri w/Trisomy 9p and Kayla w/Trisomy 21 ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.409 / Virus Database: 268.15.15/581 - Release Date: 12/9/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2007 Report Share Posted July 3, 2007 Hi, Colin. I'm very happy to hear that you had this sleep study run. Sleep apnea is a very big deal. I have it myself, and have slept with a CPAP machine for two or three years now (actually now I have an automatically adjusting CPAP or IPAP, which I like much better). If you have sleep apnea, I will bet that you will experience benefits from a CPAP machine much sooner than three months. I did the first or second day! I think you will be very happy that you finally found this out. I can tell you that I don't want to sleep even for half an hour without mine. I have even taken it with a car battery on camping trips and slept in tents with it. When my first one was stolen out of my car at a medical conference, I went nine days without one, and I was very happy to get a replacement. Good for you! Rich > > Hi - > > After 4 years of complaining to almost 50 doctors about non- restortative > sleep, I have had a sleep study done. > > I have moderate to severe sleep apnea, with an oxygenation rate as low > as 66% of normal, which the Sleep specialist says is likely responsible > for all of my problems, including even my history of strokes... > > So now I will begin undertaking a CPAP program, sleeping with a mask on > to keep pressurized air in my windpipe, so I can breath at night. The > projection is that after 3 months of this I will start to feel results, > and perhaps after a year start to reverse the damage of years of oxygen > starvation to my body during sleep. > > CPAP stands for Continuous Postive Airway Pressure, and involves > wearing a device strapped to your head while you sleep. This device > covers either the nose, or nose and mouth both, and maintains a constant > pressure of air in the air way while the person sleeps. This pressure > prevents the airway from sagging and closing off during sleep, and > ensures that sufficient oxygen is reaching the body. > > It remains to be seen how much this will help me feel better. I am going > to start Rich's simplified protocol at the same time, as much as this > might confuse the results. If the CPAP takes 3 months to show any > results, I expect any immediate gains in energy and mood I can attribute > to improvements in my methylation cycle. Longer term it will be harder > to distinguish which is reponsible. But, if I am feeling better, who > cares how I got there!! (as long as I report my findings accurately to > this group, which I will). > > But this Sleep Specialist thought this condition was likely responsible > for everything. Of course, every specialist thinks their specialty is > the most important. He said that most Doctors ignore the possibility of > this being a problem, and finding nothing else wrong, either refer the > patients to anti depressants, or categorize them as loonies, all the > while ignoring the large body of scientific work that has been done > proving the link between sleep problems (which might be unknown to the > patient) and health issues. > > I thought the CFS community might benefit from my story, and I would > love to hear from others with their experiences of going down this road, > if indeed anyone has. > > Thanks - > > Colin > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2007 Report Share Posted July 3, 2007 I have used a CPAP machine for seven years. I sleep well. It doesn't cure cfs or Lyme. It probably doesn't cure nonrestorative sleep in cfs either. But if you have sleep apnea CPAP will fix it as long as you use the machine and probably extend your life. a Carnes > > Hi - > > After 4 years of complaining to almost 50 doctors about non- restortative > sleep, I have had a sleep study done. > > I have moderate to severe sleep apnea, with an oxygenation rate as low > as 66% of normal, which the Sleep specialist says is likely responsible > for all of my problems, including even my history of strokes... > > So now I will begin undertaking a CPAP program, sleeping with a mask on > to keep pressurized air in my windpipe, so I can breath at night. The > projection is that after 3 months of this I will start to feel results, > and perhaps after a year start to reverse the damage of years of oxygen > starvation to my body during sleep. > > CPAP stands for Continuous Postive Airway Pressure, and involves > wearing a device strapped to your head while you sleep. This device > covers either the nose, or nose and mouth both, and maintains a constant > pressure of air in the air way while the person sleeps. This pressure > prevents the airway from sagging and closing off during sleep, and > ensures that sufficient oxygen is reaching the body. > > It remains to be seen how much this will help me feel better. I am going > to start Rich's simplified protocol at the same time, as much as this > might confuse the results. If the CPAP takes 3 months to show any > results, I expect any immediate gains in energy and mood I can attribute > to improvements in my methylation cycle. Longer term it will be harder > to distinguish which is reponsible. But, if I am feeling better, who > cares how I got there!! (as long as I report my findings accurately to > this group, which I will). > > But this Sleep Specialist thought this condition was likely responsible > for everything. Of course, every specialist thinks their specialty is > the most important. He said that most Doctors ignore the possibility of > this being a problem, and finding nothing else wrong, either refer the > patients to anti depressants, or categorize them as loonies, all the > while ignoring the large body of scientific work that has been done > proving the link between sleep problems (which might be unknown to the > patient) and health issues. > > I thought the CFS community might benefit from my story, and I would > love to hear from others with their experiences of going down this road, > if indeed anyone has. > > Thanks - > > Colin > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2007 Report Share Posted July 3, 2007 I see a problem with these sleep studies in that some people probably have fungal sinusitis in their homes and are in denial so they are quite possibly going to sleep better if they are somewhere that doesn't have mold.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2007 Report Share Posted July 3, 2007 I think you should test the sleep apnea stuff and the yasko simplified stuff seperately. why? is so that you will know which is helping you? why? is because if you dont know which is helping you then you willl end up paying for the other one for a long time thinking it is helping. re sleep apnea, are there any symproms of this such as breathing problems that are noticeable coughing waking up etc? and lacking these woulod it mean one doesnt have it? thanks, amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2007 Report Share Posted July 3, 2007 The nice thing about a CPAP machine is that it has a filter so that all air you breathe at night is filtered. I have no allergies and no congestion after seven years with a CPAP machine.However, I cannot even take a 10 minute nap without the machine. My home is not mold contaminated, but we stay at hotels where the rooms are bad. This is an issue because then the filter and hoses get contaminated with toxic mold, and I have time cleaning the machine. But, no, if you have severe sleep apnea it is not relieved when you clear the mold. Sleep apnea is either the throat collapsing or the brain not controlling breathing. Avoiding mold is not going to fix either of those. If your apnea is caused by the throat closing sometimes surgery will help. I have been told three times that my throat is clear and no surgery will possibly help me. a Carnes > > I see a problem with these sleep studies in that some people probably have > fungal sinusitis in their homes and are in denial so they are quite possibly > going to sleep better if they are somewhere that doesn't have mold.. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2008 Report Share Posted March 17, 2008 I know there are children on here with sleep apnea who are using the c-pap. My question is how old were they when they started to use one. Micah is 7 and 2 and a half years ago we did sleep study on him. Showed moderate sleep apnea 9didn't need anyone to tell me lol) took his tonsils and adenoids out...didn't help. Did another study still has sleep apnea. Doctor put him on singulair to see if it would help. Seemed to help for a few months and then back to square one. She wanted to do another sleep study...didn't get a good one on him cause he is older...stronger..wiser lol! She wanted to send him back for yet another one but then said that she was going to send him to orthodontist. Toook him to another sleep center they said it was ridicupus to put him through another study. He HAS sleep apnea. Had me call a dentist to find out about a pallette extender for him. Dentist said he is to little and his jaw growing so fast they would have to change the device every few weeks. Said he might be able to have a device called a rapid extender which would open the mandibular??? quickly. Soundsd painful to me. ANyway he didn't know if they could even do that but they keep telling me he is to young for the c-pap. I am at my wits end. None of us are sleeping and haven't for the past 7 years. I know this is affecting him in school. He is exhausted by the early afternoon. Any advice guys? Loree **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2008 Report Share Posted March 17, 2008 Loree, I don't know all about the apnea. had it and removing the tonsils and adenoids helped tremendously. But, I do know about the palate expander. had one for a while. It helped a lot with opening up the space. It worked very quickly. (But I am not sure if it's the rapid one you spoke of). We had to turn the key every other day and in a few weeks, it was opened to the full extent of that device. Then they put in a permanent archwire to hold the space they created. That has been in for almost 2 years, I would say. He was 8 when they did it. Creating more space has helped him with eating/not choking as much. In a few years I think we will probably do braces and then have permanent retainers put in behind the teeth. Not sure on that, but it's an option. It was someone on the list who told me about the palate expander with their child that helped me decide to do it. I am really glad we did I wish you the best in figuring out what is best for Micah Take care, Kym ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Life may not be the party we hoped for, but while we are here we might as well dance Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2008 Report Share Posted March 17, 2008 started on the C Pap at age 12, so he was a little older when he started. It has helped a lot. The doctors at Childrens Hospital said there are kids a lot younger who use the C Pap successfully, but I do not know of any personally. I know that if left untreated sleep apnea can lead to more problems. still has his tonsils and adenoids and plans to keep them. Good luck in finding the right treatment (the original mask used was cumbersome and hard to keep on; the one he has now is much more practical; we got ours through Apria, which may be a local company). Dad to , Kristi, and (all three who have Down syndrome) and (who has Cri du chat) Husband to C. in Mo. Uncle Daddy to and in Calif. (both of whom have Down syndrome) BIL to Loree5@... wrote: I know there are children on here with sleep apnea who are using the c-pap. My question is how old were they when they started to use one. Micah is 7 and 2 and a half years ago we did sleep study on him. Showed moderate sleep apnea 9didn't need anyone to tell me lol) took his tonsils and adenoids out...didn't help. Did another study still has sleep apnea. Doctor put him on singulair to see if it would help. Seemed to help for a few months and then back to square one. She wanted to do another sleep study...didn't get a good one on him cause he is older...stronger..wiser lol! She wanted to send him back for yet another one but then said that she was going to send him to orthodontist. Toook him to another sleep center they said it was ridicupus to put him through another study. He HAS sleep apnea. Had me call a dentist to find out about a pallette extender for him. Dentist said he is to little and his jaw growing so fast they would have to change the device every few weeks. Said he might be able to have a device called a rapid extender which would open the mandibular??? quickly. Soundsd painful to me. ANyway he didn't know if they could even do that but they keep telling me he is to young for the c-pap. I am at my wits end. None of us are sleeping and haven't for the past 7 years. I know this is affecting him in school. He is exhausted by the early afternoon. Any advice guys? Loree **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2008 Report Share Posted March 17, 2008 Good luck, Loree! At 17, Maverick is still not sleeping well at night. They won't take out the tonsils and adenoids because they are fine. His allergies are horrid and he " power naps " all day which is a problem in school! He did have an expander when he was younger.. about 9 or so, I think.. it was for dental reasons, not sleep issues. He had it for about 6 months and then he got a retainer to wear to bed at night.. yeah, right.. they should make those things fluorescent so you can find them under the beds and behind the dressers! I can't tell you the HOURS we spent searching for that. We just found it years later when we moved... haha. We have an alarm on his door so we know if he comes out. It's loud and he doesn't like LOUD so he only comes out for the bathroom. At least we know he's not playing video games or on my computer. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2008 Report Share Posted March 17, 2008 " At least we know he's not playing video games or on my compter " Or in our case (which I have only discovered) making late night phone calls to random people!!!! Now I have to go and look at new phone systems or something for the home - Keep smiling Jan, mother of Trent 23yo w/DS from the LandDownUnder Re: Re:Sleep apnea Good luck, Loree! At 17, Maverick is still not sleeping well at night. They won't take out the tonsils and adenoids because they are fine. His allergies are horrid and he " power naps " all day which is a problem in school! He did have an expander when he was younger.. about 9 or so, I think.. it was for dental reasons, not sleep issues. He had it for about 6 months and then he got a retainer to wear to bed at night.. yeah, right.. they should make those things fluorescent so you can find them under the beds and behind the dressers! I can't tell you the HOURS we spent searching for that. We just found it years later when we moved... haha. We have an alarm on his door so we know if he comes out. It's loud and he doesn't like LOUD so he only comes out for the bathroom. At least we know he's not playing video games or on my computer. Quote Link to comment Share on other sites More sharing options...
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