Guest guest Posted January 15, 2005 Report Share Posted January 15, 2005 I have had sleep apnea my whole life, when I fall into a deep enough sleep and begin having breathing difficulties I wake myself up, I don't know if I taught myself to wake up at a moments notice when difficulties arise, or if my Mother used to wake me up so many times that she taught me to catch it myself. I hope she unconciously teaches herself to wake up. Sorry I couldn't be of more help. Sincerley yours; Krista. Mark wrote: Sara has been experiencing apnea episodes for the last four nights. We have her hooked up to the the pulse-ox again. We have tried changing positions (upright, neckroll,flat), and sometimes the neckroll helps. But once she gets into a really deep sleep it starts. It begins with a struggleto breathe through her nose. We know she is recovering from sinus infection and is stuffy and swollen in there- I use saline very liberally. When she can no longer breathe through her nose, she opens her mouth. When this used to happen over the summer we used a nipple with a hole cut in it to be a sort of breatheable paci- it worked great. Now she has her tongue rolled up in her mouth, and putting something in it pushes it back more. She's so out of it she doesnt suck. So then the scary part... she starts to heave with her chest, but she's not getting any air, and does nothing to correct it. Her monitor goes off, or I wake up and jostle her to encourage her to recover. She wakes up gasping for air and crying. Her cries sound really dry- so last night I tried dipping her paci in water, that worked a couple of times to rouse her to breathe. Tonight I will try a humidifier. I will be calling the pulmonologist for sure, I just wondered if anyone else had experience like this that might be insightful. thanks already, Mark Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2005 Report Share Posted January 15, 2005 > , Garland had the same problem that you are describing. The pulmonologist we had admitted him immediately. He then found us a very good ENT (we fired the first one for saying " come and see me when he turns blue " ) and he decided the tonsils and adnoids had to go. They were very large for an 18 month old. His breathing was better in a matter of hours. Before you let them hook her up to the Bipap (sp) machine, let her play with it, try it on, throw it, what ever it takes to get her used to the idea of having it on. It looks to be a hard piece of medical gear to get used to. Garland freaked out the first time they tried to put him on it. Our first ENT mentioned trach. I often wonder where we would be had we stuck with him. I happened to get up on a Friday night and Garland gasped for air and plain stopped breathing. I didnt sleep hardly at all until he was admitted. That was 14 months or so ago and he has really improved his sleep. It was like he was running a race while he slept. Wet pillow, moving all of the time. Just not comfortable. You have the pulse ox to help you out. Even with him doing as well as he is doing, I would feel better if we had one as well. Thats my 2 cents and I hope it helps. Randy Garlands Poppy > Sara has been experiencing apnea episodes for the last four nights. > We have her hooked up to the the pulse-ox again. We have tried > changing positions (upright, neckroll,flat), and sometimes the > neckroll helps. But once she gets into a really deep sleep it > starts. It begins with a struggleto breathe through her nose. We > know she is recovering from sinus infection and is stuffy and > swollen in there- I use saline very liberally. When she can no > longer breathe through her nose, she opens her mouth. When this > used to happen over the summer we used a nipple with a hole cut in > it to be a sort of breatheable paci- it worked great. Now she has > her tongue rolled up in her mouth, and putting something in it > pushes it back more. She's so out of it she doesnt suck. So then > the scary part... she starts to heave with her chest, but she's not > getting any air, and does nothing to correct it. Her monitor goes > off, or I wake up and jostle her to encourage her to recover. She > wakes up gasping for air and crying. Her cries sound really dry- so > last night I tried dipping her paci in water, that worked a couple > of times to rouse her to breathe. Tonight I will try a humidifier. > I will be calling the pulmonologist for sure, I just wondered if > anyone else had experience like this that might be insightful. > thanks already, > Mark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2005 Report Share Posted January 15, 2005 Same problem here. My son was 4 when he FINALLY got his tonsils out. We lived with that stupid pulsoximeter machine for that long. He also had oxegyn which stopped helping because his airway was so obstructed, no air could get in. I remember the ENT saying when he took the tonsils and adenoids out that he should have done it sooner, they were HUGE. The ENT kept holding off (because had so many surgeries already) until I showed the video of breathing while sleeping struggling for air. As soon as the tonsils and adenoids came out, sleep apnea went away. We lived with it like I said for 4 years, always nervous when he fell asleep. Definitely look into those tonsils and adenoids. Debbie Matasker mom to w/CHARGE 7.5, 10, andra 5 Re: sleep apnea > , Garland had the same problem that you are describing. The pulmonologist we had admitted him immediately. He then found us a very good ENT (we fired the first one for saying " come and see me when he turns blue " ) and he decided the tonsils and adnoids had to go. They were very large for an 18 month old. His breathing was better in a matter of hours. Before you let them hook her up to the Bipap (sp) machine, let her play with it, try it on, throw it, what ever it takes to get her used to the idea of having it on. It looks to be a hard piece of medical gear to get used to. Garland freaked out the first time they tried to put him on it. Our first ENT mentioned trach. I often wonder where we would be had we stuck with him. I happened to get up on a Friday night and Garland gasped for air and plain stopped breathing. I didnt sleep hardly at all until he was admitted. That was 14 months or so ago and he has really improved his sleep. It was like he was running a race while he slept. Wet pillow, moving all of the time. Just not comfortable. You have the pulse ox to help you out. Even with him doing as well as he is doing, I would feel better if we had one as well. Thats my 2 cents and I hope it helps. Randy Garlands Poppy > Sara has been experiencing apnea episodes for the last four nights. > We have her hooked up to the the pulse-ox again. We have tried > changing positions (upright, neckroll,flat), and sometimes the > neckroll helps. But once she gets into a really deep sleep it > starts. It begins with a struggleto breathe through her nose. We > know she is recovering from sinus infection and is stuffy and > swollen in there- I use saline very liberally. When she can no > longer breathe through her nose, she opens her mouth. When this > used to happen over the summer we used a nipple with a hole cut in > it to be a sort of breatheable paci- it worked great. Now she has > her tongue rolled up in her mouth, and putting something in it > pushes it back more. She's so out of it she doesnt suck. So then > the scary part... she starts to heave with her chest, but she's not > getting any air, and does nothing to correct it. Her monitor goes > off, or I wake up and jostle her to encourage her to recover. She > wakes up gasping for air and crying. Her cries sound really dry- so > last night I tried dipping her paci in water, that worked a couple > of times to rouse her to breathe. Tonight I will try a humidifier. > I will be calling the pulmonologist for sure, I just wondered if > anyone else had experience like this that might be insightful. > thanks already, > Mark Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2005 Report Share Posted January 16, 2005 You know what I love about this list is that searching for adnoids and tonsils as a problem would probably be months in the making...or even years it sounds like. That makes perfect sense because its not really congestion thats doing it, it really sounds like something is just in the way- she snores through her mouth even when she is breathing normally. She has had two sleep studies- both normal- but those have been months ago. So my next questions are what is a bipap machine.. is that the sleep study saghetti head? And how do they determine its adenoids... do they do mri, or catscan...? And how difficult is the surgery? I'm so strung out from not getting any sleep, I dont know how yall did it that long. Thankyou so much for the info... the videotaping is a great idea to get the ents attention. Its much easier to insist for better care if I have a leg to stand on! ever thankful, Mark > > , Garland had the same problem that you are describing. The > pulmonologist we had admitted him immediately. He then found us a > very good ENT (we fired the first one for saying " come and see me > when he turns blue " ) and he decided the tonsils and adnoids had to > go. They were very large for an 18 month old. His breathing was > better in a matter of hours. Before you let them hook her up to the > Bipap (sp) machine, let her play with it, try it on, throw it, what > ever it takes to get her used to the idea of having it on. It looks > to be a hard piece of medical gear to get used to. Garland freaked > out the first time they tried to put him on it. Our first ENT > mentioned trach. I often wonder where we would be had we stuck with > him. I happened to get up on a Friday night and Garland gasped for > air and plain stopped breathing. I didnt sleep hardly at all until > he was admitted. That was 14 months or so ago and he has really > improved his sleep. It was like he was running a race while he > slept. Wet pillow, moving all of the time. Just not comfortable. > You have the pulse ox to help you out. Even with him doing as well as > he is doing, I would feel better if we had one as well. Thats my 2 > cents and I hope it helps. > > Randy Garlands Poppy > > > > Sara has been experiencing apnea episodes for the last four > nights. > > We have her hooked up to the the pulse-ox again. We have tried > > changing positions (upright, neckroll,flat), and sometimes the > > neckroll helps. But once she gets into a really deep sleep it > > starts. It begins with a struggleto breathe through her nose. We > > know she is recovering from sinus infection and is stuffy and > > swollen in there- I use saline very liberally. When she can no > > longer breathe through her nose, she opens her mouth. When this > > used to happen over the summer we used a nipple with a hole cut in > > it to be a sort of breatheable paci- it worked great. Now she has > > her tongue rolled up in her mouth, and putting something in it > > pushes it back more. She's so out of it she doesnt suck. So then > > the scary part... she starts to heave with her chest, but she's not > > getting any air, and does nothing to correct it. Her monitor goes > > off, or I wake up and jostle her to encourage her to recover. She > > wakes up gasping for air and crying. Her cries sound really dry- > so > > last night I tried dipping her paci in water, that worked a couple > > of times to rouse her to breathe. Tonight I will try a > humidifier. > > I will be calling the pulmonologist for sure, I just wondered if > > anyone else had experience like this that might be insightful. > > thanks already, > > Mark > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@c... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@c... Thank you! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2005 Report Share Posted January 16, 2005 Dr. did a session on sleep at the last conference. He said snoring is definitely an indicator to worry about obstruction. The sleep study is a test to determine what the cause of sleep problems might be. It does involve lots of wires. The Bi-Pap machine is a machine that monitors breathing at night and if you don't take a breath for so long it breathes for you. (I think that is accurate description) This is often used if the sleep study shows that it is " central apnea " where the brain is not telling her to breathe consistently. If it is obstruction than forcing air in wouldn't really help. Getting rid of the obstruction is the key. I don't know how you are sleeping at all. It makes me wonder if with all her sinus infections if her tonsils are now impacted as well or if it is just post-nasal drip pooling back there, if she does not swallow well. I would definitely be calling someone, because it is so concerning that is happening so sudden like. She hasn't always had this problem. Hope you find some answers. Kim L > > > You know what I love about this list is that searching for adnoids > and tonsils as a problem would probably be months in the making...or > even years it sounds like. That makes perfect sense because its not > really congestion thats doing it, it really sounds like something is > just in the way- she snores through her mouth even when she is > breathing normally. She has had two sleep studies- both normal- but > those have been months ago. So my next questions are what is a > bipap machine.. is that the sleep study saghetti head? And how do > they determine its adenoids... do they do mri, or catscan...? And > how difficult is the surgery? I'm so strung out from not getting > any sleep, I dont know how yall did it that long. Thankyou so much > for the info... the videotaping is a great idea to get the ents > attention. Its much easier to insist for better care if I have a > leg to stand on! > ever thankful, > Mark > > > > > >>> , Garland had the same problem that you are describing. > The >> pulmonologist we had admitted him immediately. He then found us a >> very good ENT (we fired the first one for saying " come and see me >> when he turns blue " ) and he decided the tonsils and adnoids had to >> go. They were very large for an 18 month old. His breathing was >> better in a matter of hours. Before you let them hook her up to the >> Bipap (sp) machine, let her play with it, try it on, throw it, what >> ever it takes to get her used to the idea of having it on. It > looks >> to be a hard piece of medical gear to get used to. Garland freaked >> out the first time they tried to put him on it. Our first ENT >> mentioned trach. I often wonder where we would be had we stuck with >> him. I happened to get up on a Friday night and Garland gasped for >> air and plain stopped breathing. I didnt sleep hardly at all until >> he was admitted. That was 14 months or so ago and he has really >> improved his sleep. It was like he was running a race while he >> slept. Wet pillow, moving all of the time. Just not comfortable. >> You have the pulse ox to help you out. Even with him doing as well > as >> he is doing, I would feel better if we had one as well. Thats my 2 >> cents and I hope it helps. >> >> Randy Garlands Poppy >> >> >>> Sara has been experiencing apnea episodes for the last four >> nights. >>> We have her hooked up to the the pulse-ox again. We have tried >>> changing positions (upright, neckroll,flat), and sometimes the >>> neckroll helps. But once she gets into a really deep sleep it >>> starts. It begins with a struggleto breathe through her nose. We >>> know she is recovering from sinus infection and is stuffy and >>> swollen in there- I use saline very liberally. When she can no >>> longer breathe through her nose, she opens her mouth. When this >>> used to happen over the summer we used a nipple with a hole cut > in >>> it to be a sort of breatheable paci- it worked great. Now she > has >>> her tongue rolled up in her mouth, and putting something in it >>> pushes it back more. She's so out of it she doesnt suck. So > then >>> the scary part... she starts to heave with her chest, but she's > not >>> getting any air, and does nothing to correct it. Her monitor > goes >>> off, or I wake up and jostle her to encourage her to recover. > She >>> wakes up gasping for air and crying. Her cries sound really dry- >> so >>> last night I tried dipping her paci in water, that worked a > couple >>> of times to rouse her to breathe. Tonight I will try a >> humidifier. >>> I will be calling the pulmonologist for sure, I just wondered if >>> anyone else had experience like this that might be insightful. >>> thanks already, >>> Mark >> >> >> >> >> >> Membership of this email support groups does not constitute > membership in >> the CHARGE Syndrome Foundation. >> For information about the CHARGE Syndrome >> Foundation or to become a member (and get the newsletter) >> please contact marion@c... or visit >> the CHARGE Syndrome Foundation web page >> at http://www.chargesyndrome.org >> 7th International >> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. >> Information will be available at our website >> www.chargesyndrome.org or by calling 1-. In Canada, > you may >> contact CHARGE Syndrome Canada at 1- (families), visit >> www.chargesyndrome.ca, or email info@c... Thank you! >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2005 Report Share Posted January 17, 2005 , Garland's Pulminary doc is the one who brought the ENT in. There are a couple of ways to find out if it is the adnoids and tonsils need to come out. I beleive that our Pulminary doc was the one who looked at Garland's throat. Garland had a current broncial scope, which showed the tonsils may be part of the problem. The ENT had planed to take out just the tonsils but once up in there he noticed that Garland had stenosis, not bone blockage but adnoids had to come out. The surgery took the ENT about 5 to 10 min. At that time we did not know that Garland was senitive to narcotics, so coming out of surgery he spent a night in ICU. That part was very nerve wrecking. I would suggest to you that you take your manual and explain to the ENT or your pulminary docs that this is our concern and see what you can get done. I would not settle for just a wait and see. The ENT did tell us that it is not standard to take the adnoids at 18 months old. Due to the fact that they are not done growing so they may grow back. That was one chance we had to take due to the fact that our son's oxegen stats was in the low 60's. He stays in the mid 90's at this time, which is good for him. We have no regrets. Best of luck. , mama to Garland 3 > > > , Garland had the same problem that you are describing. > The > > pulmonologist we had admitted him immediately. He then found us a > > very good ENT (we fired the first one for saying " come and see me > > when he turns blue " ) and he decided the tonsils and adnoids had to > > go. They were very large for an 18 month old. His breathing was > > better in a matter of hours. Before you let them hook her up to the > > Bipap (sp) machine, let her play with it, try it on, throw it, what > > ever it takes to get her used to the idea of having it on. It > looks > > to be a hard piece of medical gear to get used to. Garland freaked > > out the first time they tried to put him on it. Our first ENT > > mentioned trach. I often wonder where we would be had we stuck with > > him. I happened to get up on a Friday night and Garland gasped for > > air and plain stopped breathing. I didnt sleep hardly at all until > > he was admitted. That was 14 months or so ago and he has really > > improved his sleep. It was like he was running a race while he > > slept. Wet pillow, moving all of the time. Just not comfortable. > > You have the pulse ox to help you out. Even with him doing as well > as > > he is doing, I would feel better if we had one as well. Thats my 2 > > cents and I hope it helps. > > > > Randy Garlands Poppy > > > > > > > Sara has been experiencing apnea episodes for the last four > > nights. > > > We have her hooked up to the the pulse-ox again. We have tried > > > changing positions (upright, neckroll,flat), and sometimes the > > > neckroll helps. But once she gets into a really deep sleep it > > > starts. It begins with a struggleto breathe through her nose. We > > > know she is recovering from sinus infection and is stuffy and > > > swollen in there- I use saline very liberally. When she can no > > > longer breathe through her nose, she opens her mouth. When this > > > used to happen over the summer we used a nipple with a hole cut > in > > > it to be a sort of breatheable paci- it worked great. Now she > has > > > her tongue rolled up in her mouth, and putting something in it > > > pushes it back more. She's so out of it she doesnt suck. So > then > > > the scary part... she starts to heave with her chest, but she's > not > > > getting any air, and does nothing to correct it. Her monitor > goes > > > off, or I wake up and jostle her to encourage her to recover. > She > > > wakes up gasping for air and crying. Her cries sound really dry- > > so > > > last night I tried dipping her paci in water, that worked a > couple > > > of times to rouse her to breathe. Tonight I will try a > > humidifier. > > > I will be calling the pulmonologist for sure, I just wondered if > > > anyone else had experience like this that might be insightful. > > > thanks already, > > > Mark > > > > > > > > > > > > Membership of this email support groups does not constitute > membership in > > the CHARGE Syndrome Foundation. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter) > > please contact marion@c... or visit > > the CHARGE Syndrome Foundation web page > > at http://www.chargesyndrome.org > > 7th International > > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > > Information will be available at our website > > www.chargesyndrome.org or by calling 1-. In Canada, > you may > > contact CHARGE Syndrome Canada at 1- (families), visit > > www.chargesyndrome.ca, or email info@c... Thank you! > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2005 Report Share Posted January 17, 2005 erika has sleep apena. we never notices it to much while she as trached. after the trach came out 1 1/2 yrs ago, it become worse. she now is on Bi-pap via face mask at night when she sleeps. not all the time, but probaly 1/2 the night. she had a sleep study. she also does not have adnoids or tonisils as they were removed when she hwas little. she is now 9. we hope she outgrows it. it seems it is alot to do with position and some central brain apena. cathie mom to erika Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2005 Report Share Posted January 17, 2005 Our CHaRGE son also had very serious sleep apnea. He would repeatedly stop breathing for 30 seconds at a time. We could tell it was something physically blocking his airway because his chest was moving, trying to breath. He had his tonsils out and his adenoids flattened ( " squished " down by the ENT's finger). It helped quite a bit. But I am afraid we may have waited too long. Danny had a mental regression at about that time from which he has never recovered. I do not know if it was the result of oxygen deprivation, or some form of autism, or the result of vaccines, or something else. But I would encourage you to act quickly. - Schwartz in Ventura, California, father of 7-year-old twin boys and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 , Your description of your nights are flashbacks of my nights that I used to have with my daughter! She used to be hooked up to a SAT monitor as well as an apnea monitor. She was also on O2 at night. We had no idea what it was! The respirologist as well as the ENT were telling us to suction her more but it didn't help. Finally after putting up with horrible nights I took a video of her sleeping! I taped her, the monitors going off, the SAT readings, everything. I took it in to the respirologist and that night he admitted my daughter and she was on a CPAP machine. Eventually she got switched to a BiPAP but that did the trick! No more O2, no more snoring, no more apnea episodes! I hope this helps! Candace > > Sara has been experiencing apnea episodes for the last four nights. > We have her hooked up to the the pulse-ox again. We have tried > changing positions (upright, neckroll,flat), and sometimes the > neckroll helps. But once she gets into a really deep sleep it > starts. It begins with a struggleto breathe through her nose. We > know she is recovering from sinus infection and is stuffy and > swollen in there- I use saline very liberally. When she can no > longer breathe through her nose, she opens her mouth. When this > used to happen over the summer we used a nipple with a hole cut in > it to be a sort of breatheable paci- it worked great. Now she has > her tongue rolled up in her mouth, and putting something in it > pushes it back more. She's so out of it she doesnt suck. So then > the scary part... she starts to heave with her chest, but she's not > getting any air, and does nothing to correct it. Her monitor goes > off, or I wake up and jostle her to encourage her to recover. She > wakes up gasping for air and crying. Her cries sound really dry- so > last night I tried dipping her paci in water, that worked a couple > of times to rouse her to breathe. Tonight I will try a humidifier. > I will be calling the pulmonologist for sure, I just wondered if > anyone else had experience like this that might be insightful. > thanks already, > Mark Quote Link to comment Share on other sites More sharing options...
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