Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 See if you can find out anything from Dr. from Australia. I am sure he mentioned if they had snoring sounds to have them checked for obstructive apnea, which often causes awakening. I haven't been down that road and it was at the conference 2 years ago that I heard him, so maybe others will know better. Sleep study first? Kim > No so quick question everyone. This year has been a really bad year for > where sleep is concerned. She has been consistently woken up by a > blocked nose and a lot of the time we have been unable to settle her and she > has been quite distressed because she is so tired and wants to sleep but too > blocked to sleep. She is not a mouth breather by nature so when asleep it > is difficult. When she is awake, we have noticed that she does mouth > breathe quite a lot and that her breathing is quite noisy, almost as though > she was snoring while awake. > > Her nose has been and continues to be relentlessly more runny than it has > been in previous years, colds take infinitely longer to go etc etc. > > The upshot of all this is that she is usually very tired at school and I > don't know how the poor girl learns anything. She has been quite irritable > with her therapies which is quite unlike her (anyone who saw her in the pool > would be surprised that she has been upset in hydrotherapy and horse riding > which she normally loves. I think it has all been because she too is > tired). > > My question is, have I heard something on here about the part enlarged > adenoids have played in these sort of problems with children with CHARGE? > Has anyone had surgery for removal of adenoids? Why? What has been the > outcome? > > I don't look kindly on surgery but her quality of life needs to improve so > we have to look at all options. The CHARGE night parties plus the > additional nose-led disturbances are a bit much. I also wonder what part > the adenoids (if that is the problem) play in the persistent glue ear. > > We are seeing the respiratory specialist next week so would appreciate any > input, advise, suggestions, experiences etc as I am thinking of asking for > re-referral to ENT. > > Thanks. > > Flo > > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca, or > email info@.... > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 Flo, has obstructive sleep apnea and is on oxygen when she sleeps. She had a bilateral cleft lip and palate. Once the lip was repaired, she started making a lot more noise when she slept and it was after that when they did a sleep study. Her new ENT removed her tonsils in April because they were huge. She was planning on looking at the adenoids and looking for narrowing in the nasal passages when they did the surgery, but they found a TE fistula and decided not to do anything else until later. She just had another sleep study done last week and we are waiting for the result of it. She did say that because her tonsils were so big, that could be an indication that the adenoids are also. We were told to never remove the adenoids because of her cleft palate. I guess the reason is for speech. She could sound nasally when she talks. Her ENT said that she can remove just a portion of them if they are the problem, but that if they need to be completely removed that can be done also. We just have to decide what is most important her speech or her breathing. As though that is a hard decision to make. She doesn't really snore, she just makes some gasping sounds and strider sounds when she is sleeping. It has gotten better since the tonsils were removed and the fistula was repaired, but she still makes them occasionally. Her ENT also thinks it could all be due to her airway being weak as well. She does wake up a lot, but she just sits in her crib and plays for a while and then goes back to sleep eventually. She is not a very sound sleeper though. I can go in her room and she will wake up as soon as I touch her bed most of the time. Her eyes are always red, as though she is tired, but she just doesn't sleep that much to begin with. Lee Mom to 29 months CHARGE, Marissa - 4yrs, Dalani - 9yrs. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 Wow, this has been really interesting to me this week. We saw Makenna's ENT last week for our check-up and I was asking questions about her snoring. I usually only notice it when she is sick but on vacation sleeping in the same room with her I really noticed how much she does it. He suggested a sleep study, which we are waiting to find out the appt. time. I was pretty nervous walking out of the office though, because he stated that he doesn't anticipate finding any good news. He is afraid she is having apnea spells. He said that he didn't think her tonsils or adenoids were swollen but Makenna wasn't cooperating for the exam either, being that he had just cleaned her ears out which required three adults holding her down. He also stated that she could have some narrowing in her nostrils, but with her anatomy he is concerned that he may need to put her trach back in!!!!! I really am praying this isn't the only answer. Makenna has taken off both physically and mentally since getting that trach out. She worked really hard to get there. It would be just devastating to have to have it back in. Good to know so many benefited from the adenoid removal. I will be sure to inform him of that. For now I will take 's great advice of not worrying about things in the future. ONe day at a time. , mom to Makenna > Flo, > > has obstructive sleep apnea and is on oxygen when she sleeps. She had a bilateral cleft lip and palate. Once the lip was repaired, she started making a lot more noise when she slept and it was after that when they did a sleep study. > > Her new ENT removed her tonsils in April because they were huge. She was planning on looking at the adenoids and looking for narrowing in the nasal passages when they did the surgery, but they found a TE fistula and decided not to do anything else until later. She just had another sleep study done last week and we are waiting for the result of it. She did say that because her tonsils were so big, that could be an indication that the adenoids are also. > > We were told to never remove the adenoids because of her cleft palate. I guess the reason is for speech. She could sound nasally when she talks. Her ENT said that she can remove just a portion of them if they are the problem, but that if they need to be completely removed that can be done also. We just have to decide what is most important her speech or her breathing. As though that is a hard decision to make. > > She doesn't really snore, she just makes some gasping sounds and strider sounds when she is sleeping. It has gotten better since the tonsils were removed and the fistula was repaired, but she still makes them occasionally. Her ENT also thinks it could all be due to her airway being weak as well. She does wake up a lot, but she just sits in her crib and plays for a while and then goes back to sleep eventually. She is not a very sound sleeper though. I can go in her room and she will wake up as soon as I touch her bed most of the time. Her eyes are always red, as though she is tired, but she just doesn't sleep that much to begin with. > > Lee > Mom to 29 months CHARGE, Marissa - 4yrs, Dalani - 9yrs. > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 -Flo, as you can see removing the adenoids is pretty common in CHARGE kids. My little guy had sleep apnea and never got a good nights sleep until we had his removed. They were huge and so were his tonsils. He now rests easily at night. I too hate the surgery side of CHARGE, but it was worth it for his quality of life. Randy, Garlands Poppy -- In CHARGE , " Florence Njeru " <flonjeru@h...> wrote: > No so quick question everyone. This year has been a really bad year for > where sleep is concerned. She has been consistently woken up by a > blocked nose and a lot of the time we have been unable to settle her and she > has been quite distressed because she is so tired and wants to sleep but too > blocked to sleep. She is not a mouth breather by nature so when asleep it > is difficult. When she is awake, we have noticed that she does mouth > breathe quite a lot and that her breathing is quite noisy, almost as though > she was snoring while awake. > > Her nose has been and continues to be relentlessly more runny than it has > been in previous years, colds take infinitely longer to go etc etc. > > The upshot of all this is that she is usually very tired at school and I > don't know how the poor girl learns anything. She has been quite irritable > with her therapies which is quite unlike her (anyone who saw her in the pool > would be surprised that she has been upset in hydrotherapy and horse riding > which she normally loves. I think it has all been because she too is > tired). > > My question is, have I heard something on here about the part enlarged > adenoids have played in these sort of problems with children with CHARGE? > Has anyone had surgery for removal of adenoids? Why? What has been the > outcome? > > I don't look kindly on surgery but her quality of life needs to improve so > we have to look at all options. The CHARGE night parties plus the > additional nose-led disturbances are a bit much. I also wonder what part > the adenoids (if that is the problem) play in the persistent glue ear. > > We are seeing the respiratory specialist next week so would appreciate any > input, advise, suggestions, experiences etc as I am thinking of asking for > re-referral to ENT. > > Thanks. > > Flo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 tim had some of these issues and his nasal passages were blocked again. just a thought.....hope you find the answers whatever the problem Adenoids > No so quick question everyone. This year has been a really bad year for > where sleep is concerned. She has been consistently woken up by a > blocked nose and a lot of the time we have been unable to settle her and > she > has been quite distressed because she is so tired and wants to sleep but > too > blocked to sleep. She is not a mouth breather by nature so when asleep it > is difficult. When she is awake, we have noticed that she does mouth > breathe quite a lot and that her breathing is quite noisy, almost as > though > she was snoring while awake. > > Her nose has been and continues to be relentlessly more runny than it has > been in previous years, colds take infinitely longer to go etc etc. > > The upshot of all this is that she is usually very tired at school and I > don't know how the poor girl learns anything. She has been quite > irritable > with her therapies which is quite unlike her (anyone who saw her in the > pool > would be surprised that she has been upset in hydrotherapy and horse > riding > which she normally loves. I think it has all been because she too is > tired). > > My question is, have I heard something on here about the part enlarged > adenoids have played in these sort of problems with children with CHARGE? > Has anyone had surgery for removal of adenoids? Why? What has been the > outcome? > > I don't look kindly on surgery but her quality of life needs to improve so > we have to look at all options. The CHARGE night parties plus the > additional nose-led disturbances are a bit much. I also wonder what part > the adenoids (if that is the problem) play in the persistent glue ear. > > We are seeing the respiratory specialist next week so would appreciate any > input, advise, suggestions, experiences etc as I am thinking of asking for > re-referral to ENT. > > Thanks. > > Flo > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca, or > email info@.... > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 michelle i have to agree with you there surgery is good for better quality life yes flo adnoids tonsils i dont know like many others ive had the same thing ive had sleep aponea then seemed to grow out of that my toncils and adnoids are huge breda i think they might e like baleys if you take them out it does something to the palate is that right thats what they said to me they ddint say was speach they said something about the palate not being able to hold or something is that right am i on the right track here icf im not jump in but thats what my ent sad to us but then ive had one change so dont know had a really old man for years the new ones great to but think was him that said and couldnt mine block my eustation tube like marrylin said course ive had whistling problems should i consider you allwasy do this to me and others im sure make more things to think bout lol hugs ellen > > -Flo, as you can see removing the adenoids is pretty common in > CHARGE kids. My little guy had sleep apnea and never got a good > nights sleep until we had his removed. They were huge and so were > his tonsils. He now rests easily at night. I too hate the surgery > side of CHARGE, but it was worth it for his quality of life. > > Randy, Garlands Poppy > > > > > > > > -- In CHARGE , " Florence Njeru " <flonjeru@h...> wrote: > > No so quick question everyone. This year has been a really bad > year for > > where sleep is concerned. She has been consistently woken > up by a > > blocked nose and a lot of the time we have been unable to settle > her and she > > has been quite distressed because she is so tired and wants to > sleep but too > > blocked to sleep. She is not a mouth breather by nature so when > asleep it > > is difficult. When she is awake, we have noticed that she does > mouth > > breathe quite a lot and that her breathing is quite noisy, almost > as though > > she was snoring while awake. > > > > Her nose has been and continues to be relentlessly more runny than > it has > > been in previous years, colds take infinitely longer to go etc etc. > > > > The upshot of all this is that she is usually very tired at school > and I > > don't know how the poor girl learns anything. She has been quite > irritable > > with her therapies which is quite unlike her (anyone who saw her > in the pool > > would be surprised that she has been upset in hydrotherapy and > horse riding > > which she normally loves. I think it has all been because she too > is > > tired). > > > > My question is, have I heard something on here about the part > enlarged > > adenoids have played in these sort of problems with children with > CHARGE? > > Has anyone had surgery for removal of adenoids? Why? What has > been the > > outcome? > > > > I don't look kindly on surgery but her quality of life needs to > improve so > > we have to look at all options. The CHARGE night parties plus the > > additional nose-led disturbances are a bit much. I also wonder > what part > > the adenoids (if that is the problem) play in the persistent glue > ear. > > > > We are seeing the respiratory specialist next week so would > appreciate any > > input, advise, suggestions, experiences etc as I am thinking of > asking for > > re-referral to ENT. > > > > Thanks. > > > > Flo > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca, or > email info@.... > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org <http://www.chargesyndrome.org> or by calling > 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 Flo, Referral to an ENT? Patty's ENT is one of her most important doctors. Make sure you get one that can comprehend CHARGE. Patty had her tonsils taken out to help her breathe and swallow. When they did that they warned us to never have her adenoids out even though they were large for her. Patty has a submucus cleft, and a short soft palate. They said her adenoids help with her infections but they also said her adenoids help the physical structure and movement in there including her breathing. For some reason they said that area would collapse easily without them and that was directly due to her structure in there. I don't know how that would ever work but I'll never forget them saying that. She was only around 5 at the time though and I am sure science has changed since then. The only bad side of the tonsillectomy was that she had to learn how to swallow again. Bonnie, Mom to Kris 22, Patty CHARGE 20 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 acutaly bonnie what you say seems along the lines of what my drs have said u\just i couldnt understand it when brenda lee had said they you can do the tonsils with the cleft even if they are bit but now i understand and as for charge cotors thats the best all mine including my ent understand charge and its acutaly him or the old one anyway that would say uh this is charge or i can go to my dental clinic arh thats charge or i can go to my endo lady and shell be like um yes with charge you can its great i love it course they all understand the only one that isnt right in tere on all this charge thing is my gp and my gastro doctor but hey they are learing as they come to know me better the g one certainly knows all things tummy lol well just wanted to say its great having a dr that knows all tings charge course it makes life easier for us all so flo go ent that knows charge and resp that knows charge and youll be getting there i think even my old sleep doctor knows ti the new one doesnt oh that reminds me lol gotta ring them bout my last sleep tesxt lol im venting and you all say you do look at me LOLXXXXXXXXXX well talk to you all again tomorrwo im sure a step is a bound round here ellen > > Flo, > > Referral to an ENT? Patty's ENT is one of her most important doctors. Make > sure you get one that can comprehend CHARGE. > > Patty had her tonsils taken out to help her breathe and swallow. When they > did that they warned us to never have her adenoids out even though they > were > large for her. Patty has a submucus cleft, and a short soft palate. They > said > her adenoids help with her infections but they also said her adenoids help > the > physical structure and movement in there including her breathing. For some > reason they said that area would collapse easily without them and that was > directly due to her structure in there. I don't know how that would ever > work but > I'll never forget them saying that. > > She was only around 5 at the time though and I am sure science has changed > since then. > > The only bad side of the tonsillectomy was that she had to learn how to > swallow again. > > Bonnie, Mom to Kris 22, Patty CHARGE 20 and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 Flo, Here are some things that have helped with Kennedy's chronic runny nose and " glue ear " (constant gunk & ear infections for her). We started using " Sinus Rinse " in Dec, 2003. Kennedy leans over the sink and we " flush her out " with this bottle our ENT gave us with warm water and a packet of rinse mix (you can do it just with water though). I can comfortably say in this setting that the amount of snot that comes out of her nose is INCREDIBLE and we do it morning and night a lot of days but ALWAYS every morning. We wondered how she dealt with that before. If we forget to do it, the nose wiping goes up about 75%. It's decreased the ongoing runniness so much. She needs to be able to lean over the sink and protect her airway though -- definitely something to talk about with her ENT. For the Ear issues, she wore in the ear digital aids for the first four years or so, constant ear infections and a gross smell and discharge from the ears. During an audiology exam one day, we tried the bone conduction aid and she did GREAT, so great that it's the first thing she picks when we get to an audiology exam now. She got a loaner BAHA (bone anchored hearing aid) on a soft band to try and we haven't looked back since. She is getting the BAHA implant where a screw is put on the back of her head and the aid just pops on & off that instead of the band, increasing the quality of sound even more. The infections, discharge and smell STOPPED when we got the aids out of her ears. NOW, you must have the right type of hearing loss for the BAHA to be effective; it must have a conductive component (Kennedy's is a mixed loss: sensorineural and conductive). This might be something to bring up with Jess' audiologist. I have also heard on the listserv about the benefits for some children with regards to night breathing with the adenoid removal. I asked K's ENT and he said hers were not enlarged and he really didn't want to take them out. She's been pretty good now so we've left that alone for the time being. Hope you get some answers and ideas that will help Jess sleep; nothing worse than going on no sleep... Hugs to all, Home: lisaweir@... Work: lisa.weir@... Phone: Web: http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 and sinux nasal spray helps me if i get what i call my reflux nose int he mornings just a spray in the mornign and im as good as new > > Flo, Here are some things that have helped with Kennedy's chronic runny > nose and " glue ear " (constant gunk & ear infections for her). We started > using " Sinus Rinse " in Dec, 2003. Kennedy leans over the sink and we " flush > her out " with this bottle our ENT gave us with warm water and a packet of > rinse mix (you can do it just with water though). I can comfortably say in > this setting that the amount of snot that comes out of her nose is > INCREDIBLE and we do it morning and night a lot of days but ALWAYS every > morning. We wondered how she dealt with that before. If we forget to do it, > the nose wiping goes up about 75%. It's decreased the ongoing runniness so > much. She needs to be able to lean over the sink and protect her airway > though -- definitely something to talk about with her ENT. > > For the Ear issues, she wore in the ear digital aids for the first four > years or so, constant ear infections and a gross smell and discharge from > the ears. During an audiology exam one day, we tried the bone conduction aid > and she did GREAT, so great that it's the first thing she picks when we get > to an audiology exam now. She got a loaner BAHA (bone anchored hearing aid) > on a soft band to try and we haven't looked back since. She is getting the > BAHA implant where a screw is put on the back of her head and the aid just > pops on & off that instead of the band, increasing the quality of sound even > more. The infections, discharge and smell STOPPED when we got the aids out > of her ears. NOW, you must have the right type of hearing loss for the BAHA > to be effective; it must have a conductive component (Kennedy's is a mixed > loss: sensorineural and conductive). This might be something to bring up > with Jess' audiologist. > > I have also heard on the listserv about the benefits for some children > with regards to night breathing with the adenoid removal. I asked K's ENT > and he said hers were not enlarged and he really didn't want to take them > out. She's been pretty good now so we've left that alone for the time being. > > Hope you get some answers and ideas that will help Jess sleep; nothing > worse than going on no sleep... > Hugs to all, > > > > > > Home: lisaweir@... > Work: lisa.weir@... > Phone: > Web: http://ca.geocities.com/weirfamilyrogers > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 Flo, Just wanted to let you know that MacKenzie's sleep improved dramatically following adenoid and tonsil removal.She rarely slept for any longer that 2 hours before the surgery and her stridor was awful. Obviously this was a major quality of life issue. Jeanie Colp Mom to MacKenzie CHARGE 7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 There are others whose children use assisted ventilation at night Bi-Pap when apnea is a problem, which does not involve a trach. What is surprising is how big these tonsils and adenoids can be, especially considering how young the kids are who have had them out. Something docs might not be routinely expecting, so definitely something to point out. Kim > Wow, this has been really interesting to me this week. We saw > Makenna's ENT last week for our check-up and I was asking questions > about her snoring. I usually only notice it when she is sick but on > vacation sleeping in the same room with her I really noticed how > much she does it. He suggested a sleep study, which we are waiting > to find out the appt. time. I was pretty nervous walking out of the > office though, because he stated that he doesn't anticipate finding > any good news. He is afraid she is having apnea spells. He said > that he didn't think her tonsils or adenoids were swollen but > Makenna wasn't cooperating for the exam either, being that he had > just cleaned her ears out which required three adults holding her > down. He also stated that she could have some narrowing in her > nostrils, but with her anatomy he is concerned that he may need to > put her trach back in!!!!! I really am praying this isn't the only > answer. Makenna has taken off both physically and mentally since > getting that trach out. She worked really hard to get there. It > would be just devastating to have to have it back in. Good to know > so many benefited from the adenoid removal. I will be sure to > inform him of that. > > For now I will take 's great advice of not worrying about > things in the future. ONe day at a time. > > , mom to Makenna > > > > > >> Flo, >> >> has obstructive sleep apnea and is on oxygen when she > sleeps. She had a bilateral cleft lip and palate. Once the lip was > repaired, she started making a lot more noise when she slept and it > was after that when they did a sleep study. >> >> Her new ENT removed her tonsils in April because they were huge. > She was planning on looking at the adenoids and looking for > narrowing in the nasal passages when they did the surgery, but they > found a TE fistula and decided not to do anything else until later. > She just had another sleep study done last week and we are waiting > for the result of it. She did say that because her tonsils were so > big, that could be an indication that the adenoids are also. >> >> We were told to never remove the adenoids because of her cleft > palate. I guess the reason is for speech. She could sound nasally > when she talks. Her ENT said that she can remove just a portion of > them if they are the problem, but that if they need to be completely > removed that can be done also. We just have to decide what is most > important her speech or her breathing. As though that is a hard > decision to make. >> >> She doesn't really snore, she just makes some gasping sounds and > strider sounds when she is sleeping. It has gotten better since the > tonsils were removed and the fistula was repaired, but she still > makes them occasionally. Her ENT also thinks it could all be due to > her airway being weak as well. She does wake up a lot, but she just > sits in her crib and plays for a while and then goes back to sleep > eventually. She is not a very sound sleeper though. I can go in her > room and she will wake up as soon as I touch her bed most of the > time. Her eyes are always red, as though she is tired, but she just > doesn't sleep that much to begin with. >> >> Lee >> Mom to 29 months CHARGE, Marissa - 4yrs, Dalani - 9yrs. >> >> >> >> >> >> __________________________________________________ >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2005 Report Share Posted August 10, 2005 Oh, LISA!!! I wish I had known this when Andy was little. I had NO clue about these possibilities at the time...... Those poor teachers who suffered through that nose :-0 Fortunately he has outgrown it all - runny nose, stink, ear infections! Congratulations for discovering Sinus Rinse! Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2005 Report Share Posted August 10, 2005 WOW everyone, I certainly did not expect such a big response so quickly- THANK YOU. I am reassured that tonsils and adenoids present a common problems for our kids. Although has had CA repair (successfully at age 7 weeks) we feel confident that this is not the problem as her nose breathing is sometimes really excellent. You guys have all given me so much to discuss next week. Certainly, at this moment in time, no worries about speech but as someone (sorry, can't recall who) said, quality of life is so much more essential. HUGE thank you everyone for your input. Any more thoughts, I will be happy to hear them and will also discuss sinus rinse with ENT when re-referred. She has been discharged from ENT several times but the surgeon, as Simon says, did well with her CA and her various stents and tubes insertions, and he ensured she narrowly missed being trached at 6 months. He has done well by her so far so here's hoping. Flo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2005 Report Share Posted August 10, 2005 Kim the sleep study was the easy part. Once Garland's oxygen level hit low 60's (about 45 min. into the study) the entire floor of the hospital freeked. They put him in an oxygen tent for the rest of the study. Yes, he failed! > >>>> Flo, > >>>> > >>>> has obstructive sleep apnea and is on oxygen when she > >>> sleeps. She had a bilateral cleft lip and palate. Once the lip was > >>> repaired, she started making a lot more noise when she slept and > > it > >>> was after that when they did a sleep study. > >>>> > >>>> Her new ENT removed her tonsils in April because they were huge. > >>> She was planning on looking at the adenoids and looking for > >>> narrowing in the nasal passages when they did the surgery, but > > they > >>> found a TE fistula and decided not to do anything else until > > later. > >>> She just had another sleep study done last week and we are waiting > >>> for the result of it. She did say that because her tonsils were so > >>> big, that could be an indication that the adenoids are also. > >>>> > >>>> We were told to never remove the adenoids because of her cleft > >>> palate. I guess the reason is for speech. She could sound nasally > >>> when she talks. Her ENT said that she can remove just a portion of > >>> them if they are the problem, but that if they need to be > > completely > >>> removed that can be done also. We just have to decide what is most > >>> important her speech or her breathing. As though that is a hard > >>> decision to make. > >>>> > >>>> She doesn't really snore, she just makes some gasping sounds and > >>> strider sounds when she is sleeping. It has gotten better since > > the > >>> tonsils were removed and the fistula was repaired, but she still > >>> makes them occasionally. Her ENT also thinks it could all be due > > to > >>> her airway being weak as well. She does wake up a lot, but she > > just > >>> sits in her crib and plays for a while and then goes back to sleep > >>> eventually. She is not a very sound sleeper though. I can go in > > her > >>> room and she will wake up as soon as I touch her bed most of the > >>> time. Her eyes are always red, as though she is tired, but she > > just > >>> doesn't sleep that much to begin with. > >>>> > >>>> Lee > >>>> Mom to 29 months CHARGE, Marissa - 4yrs, Dalani - 9yrs. > >>>> > >>>> > >>>> > >>>> > >>>> > >>>> __________________________________________________ > >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2005 Report Share Posted August 10, 2005 Cathie, Thank you. I know we tried it with Garland and it just did not work. That was the second and last time our doctor mentioned a trach. We said that was our last resort. The Bi-Pap didn't work due to Garland not alowing it on his face so they pulled the tonsils and adenoids. WOW! What a different boy. > sorry I am just responding, been crazy busy. > Anyway. 's trach came out 2 years ago and she developed sleep apnea > with out the trach. we did a sleep study and found her having apnea 40+ times > over night. > we now use a BIPAP face mask during the night. Not all night. It took some > real adjusting, in fact I even said it was easier with a trach. > we wait til she falls asleep, and when she starts snoring, coughing etc we > put it on. she keeps it on for about 5-7 hours then wakes and pulls it off. > we take it off. Some nights (last night) I put didn't put it on, she started > coughing at 12:30, I put it on, at 2pm she woke up wanted it off, she pulls > at it etc. I took it off, she was ok til 5:30am, then starting coughing etc so > I put it back on til she woke up. I usually have night nurses, so they deal > with it, but not always (nurses are had to come by these days). > has had her tonsils and adenoids out. She has had co anal atresia > repair 6 X. It is closed again and not she has a deviated septum, also the nose > has closed again. so we are going for a cat scan next week to see if it is > bone or tissue to decide the plan of action. She will probably have the co > anal atresia repair again this fall. Her nose its mostly closed. I am hoping > that after the nose is open we can get rid of the BIPAP. > It took a lot of getting used to, she still hates it. but it is easier and > helps her to breath, so you do what you have to do. > Cathie, mom to erika 10 CHARGEr > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2005 Report Share Posted August 10, 2005 - I can understand why you are uncomfortable with the thought of returning to the trach. We haven't had experience with that, but from all of our other doctoring experience and the years of conversations here lead me to tell you that if the dr suggests it you probably should get a second or third opinion before you jump into it. Medicine is so variable. There are so many different ways to approach these things. If it's not life-threatening and you're uncomfortable making the decision, take time to research other options. Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2005 Report Share Posted August 10, 2005 Thanks Michele, I just relate the trach to a bad time in this household. Makenna was always sick and never had energy, she coughed constantly and was always being suctioned. I tell you when we removed the trach she became a different child. Her personality really developed and she just took off developmentally and medically. I would hate to back track and I would hate to think what it would mean for her. I am just keeping my thoughts positive that maybe she is just a person who snores. From the adenoid talks, I am really hoping it is something as simple as that. When she first had the trach removed we kept her on a pulse oximeter through the night and she never had dips. Jay and I have both said that the trach will only happen if it is our last and only choice. Please keep her in your thoughts. , mom to Makenna -- Re: Adenoids - I can understand why you are uncomfortable with the thought of returning to the trach. We haven't had experience with that, but from all of our other doctoring experience and the years of conversations here lead me to tell you that if the dr suggests it you probably should get a second or third opinion before you jump into it. Medicine is so variable. There are so many different ways to approach these things. If it's not life-threatening and you're uncomfortable making the decision, take time to research other options. Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2005 Report Share Posted August 10, 2005 Dylan had one as an infant, but not after that. When he gets to snoring or appearing to have long pauses between breaths, I turn him over onto his side and he does better. I never see apnea when he is on his side. Kim > Kim the sleep study was the easy part. Once Garland's oxygen level > hit low 60's (about 45 min. into the study) the entire floor of the > hospital freeked. They put him in an oxygen tent for the rest of the > study. Yes, he failed! > > > > > > > >>>>>> Flo, >>>>>> >>>>>> has obstructive sleep apnea and is on oxygen when she >>>>> sleeps. She had a bilateral cleft lip and palate. Once the lip > was >>>>> repaired, she started making a lot more noise when she slept and >>> it >>>>> was after that when they did a sleep study. >>>>>> >>>>>> Her new ENT removed her tonsils in April because they were > huge. >>>>> She was planning on looking at the adenoids and looking for >>>>> narrowing in the nasal passages when they did the surgery, but >>> they >>>>> found a TE fistula and decided not to do anything else until >>> later. >>>>> She just had another sleep study done last week and we are > waiting >>>>> for the result of it. She did say that because her tonsils were > so >>>>> big, that could be an indication that the adenoids are also. >>>>>> >>>>>> We were told to never remove the adenoids because of her cleft >>>>> palate. I guess the reason is for speech. She could sound > nasally >>>>> when she talks. Her ENT said that she can remove just a portion > of >>>>> them if they are the problem, but that if they need to be >>> completely >>>>> removed that can be done also. We just have to decide what is > most >>>>> important her speech or her breathing. As though that is a hard >>>>> decision to make. >>>>>> >>>>>> She doesn't really snore, she just makes some gasping sounds > and >>>>> strider sounds when she is sleeping. It has gotten better since >>> the >>>>> tonsils were removed and the fistula was repaired, but she still >>>>> makes them occasionally. Her ENT also thinks it could all be due >>> to >>>>> her airway being weak as well. She does wake up a lot, but she >>> just >>>>> sits in her crib and plays for a while and then goes back to > sleep >>>>> eventually. She is not a very sound sleeper though. I can go in >>> her >>>>> room and she will wake up as soon as I touch her bed most of the >>>>> time. Her eyes are always red, as though she is tired, but she >>> just >>>>> doesn't sleep that much to begin with. >>>>>> >>>>>> Lee >>>>>> Mom to 29 months CHARGE, Marissa - 4yrs, Dalani - 9yrs. >>>>>> >>>>>> >>>>>> >>>>>> >>>>>> >>>>>> __________________________________________________ >>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2005 Report Share Posted August 10, 2005 Of course Makenna will remain in my thoughts. Let's hope this was just a premature comment by the ENT and it won't even be a remote possibility. Michele W katie wrote: > Thanks Michele, > > I just relate the trach to a bad time in this household. Makenna was > always > sick and never had energy, she coughed constantly and was always being > suctioned. I tell you when we removed the trach she became a different > child. Her personality really developed and she just took off > developmentally and medically. I would hate to back track and I would > hate > to think what it would mean for her. I am just keeping my thoughts > positive > that maybe she is just a person who snores. From the adenoid talks, I am > really hoping it is something as simple as that. When she first had the > trach removed we kept her on a pulse oximeter through the night and she > never had dips. Jay and I have both said that the trach will only > happen if > it is our last and only choice. Please keep her in your thoughts. > > , mom to Makenna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2005 Report Share Posted August 11, 2005 not just ents all doctos do that dont they > > , I can't even imagine being told the trach might have to go back > in. My daughter has a trach, she's 14 months old, and just had her > first choanal atresia repair. During the surgery, her ent told me he > almost had to stop the surgery because her adenoids were so huge, he > couldn't get in to do the repair. So, they ended up taking her > adenoids out and then doing the atresia repair. He said that there > was no way she wouldn't have needed them out later anyway. He also > said that her tonsils would definately come out too. I hope all goes > well with you. Sometimes I think the ent's tell you what could happen > in the worse case scenario just to keep you prepared. I know in our > case, we are always concerned because when they warn us of something, > it almost always gets to that point with Carmen! Take care! > > , mom to Zach 4 year and Carmen 14 months (CHARGE) > > > > > >>>>>> Flo, > > > >>>>>> > > > >>>>>> has obstructive sleep apnea and is on oxygen when she > > > >>>>> sleeps. She had a bilateral cleft lip and palate. Once the lip > > > > was > > > >>>>> repaired, she started making a lot more noise when she slept and > > > >>> it > > > >>>>> was after that when they did a sleep study. > > > >>>>>> > > > >>>>>> Her new ENT removed her tonsils in April because they were > > > > huge. > > > >>>>> She was planning on looking at the adenoids and looking for > > > >>>>> narrowing in the nasal passages when they did the surgery, but > > > >>> they > > > >>>>> found a TE fistula and decided not to do anything else until > > > >>> later. > > > >>>>> She just had another sleep study done last week and we are > > > > waiting > > > >>>>> for the result of it. She did say that because her tonsils were > > > > so > > > >>>>> big, that could be an indication that the adenoids are also. > > > >>>>>> > > > >>>>>> We were told to never remove the adenoids because of her cleft > > > >>>>> palate. I guess the reason is for speech. She could sound > > > > nasally > > > >>>>> when she talks. Her ENT said that she can remove just a portion > > > > of > > > >>>>> them if they are the problem, but that if they need to be > > > >>> completely > > > >>>>> removed that can be done also. We just have to decide what is > > > > most > > > >>>>> important her speech or her breathing. As though that is a hard > > > >>>>> decision to make. > > > >>>>>> > > > >>>>>> She doesn't really snore, she just makes some gasping sounds > > > > and > > > >>>>> strider sounds when she is sleeping. It has gotten better since > > > >>> the > > > >>>>> tonsils were removed and the fistula was repaired, but she still > > > >>>>> makes them occasionally. Her ENT also thinks it could all be due > > > >>> to > > > >>>>> her airway being weak as well. She does wake up a lot, but she > > > >>> just > > > >>>>> sits in her crib and plays for a while and then goes back to > > > > sleep > > > >>>>> eventually. She is not a very sound sleeper though. I can go in > > > >>> her > > > >>>>> room and she will wake up as soon as I touch her bed most of the > > > >>>>> time. Her eyes are always red, as though she is tired, but she > > > >>> just > > > >>>>> doesn't sleep that much to begin with. > > > >>>>>> > > > >>>>>> Lee > > > >>>>>> Mom to 29 months CHARGE, Marissa - 4yrs, Dalani - 9yrs. > > > >>>>>> > > > >>>>>> > > > >>>>>> > > > >>>>>> > > > >>>>>> > > > >>>>>> __________________________________________________ > > > >>>>>> Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.