Guest guest Posted June 8, 2005 Report Share Posted June 8, 2005 Hi Tommy had his tonsils and adenoids taken out when he was 8. He was snoring really bad and also did stop breathing. He was really having trouble sleeping. He is doing a lot better now. He still gets into that sitting up position at night but I just make him lay back down. I don't know how he can sleep like that and also some nights he gets up a lot. I will wake up at 3 or 4 in the morning sometimes and he will have his TV on. I will just tell him its still dark outside you need to go back to bed and it seems to work. K. Tommy 11 DS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2005 Report Share Posted June 8, 2005 Bonnie, had a sleep study with similar findings. His tonsils and adenoids were removed at about 5 years old, and it has been wonderful!! He sleeps so much better and doesn't thrash all around his bed like he did before. We are very glad that we did it! One piece of advice though. The surgery is usually done outpatient. Insist that Grace stays over at least one night to be monitored. did and ended up staying a few days because he wouldn't drink and some times our kids don't bounce back as fast. was also readmitted 2 days after he was discharged to get him hydrated again because once we got home he refused to drink again! (the nurses told him that if he would drink, he could go home...so he did and he got to go home...only to refuse to take another drink!) So, just be aware of that. All of that being said, I don't regret it at all! Very glad that we had it done. Good luck =) Kym...mom to 5 including (8ds) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2005 Report Share Posted June 8, 2005 Bonnie, had a sleep study with similar findings. His tonsils and adenoids were removed at about 5 years old, and it has been wonderful!! He sleeps so much better and doesn't thrash all around his bed like he did before. We are very glad that we did it! One piece of advice though. The surgery is usually done outpatient. Insist that Grace stays over at least one night to be monitored. did and ended up staying a few days because he wouldn't drink and some times our kids don't bounce back as fast. was also readmitted 2 days after he was discharged to get him hydrated again because once we got home he refused to drink again! (the nurses told him that if he would drink, he could go home...so he did and he got to go home...only to refuse to take another drink!) So, just be aware of that. All of that being said, I don't regret it at all! Very glad that we had it done. Good luck =) Kym...mom to 5 including (8ds) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2005 Report Share Posted June 8, 2005 had tonsils and part of her adenoids out, and her sleep apnea improved, but she still snores, sleeps in wierd positions, and has episodes of apnea. She is better than she was, and sleeps less restlessly, but it wasn't a total cure. We also had a " stubborn " recovery, spending the night and another long day until our little patient would eat and drink. Fortunately, the nurses said she could eat/drink whatever she wanted, so (in desperation..... I wanted to go home, LOL) a trip by wagon downstairs (in Children's Hospital) to Mcs did the trick....... 1/2 bag of fries and some coke (excellent post-op diet!) totally made her forget that she " can't drink " . Pulled her back upstairs, she demonstrated her skills to the entire nursing station, we packed up, got our discharge papers, and were out of there within an hour. She was 4 at the time. , mom to (9), (7 DS), and (5) kym mac wrote: >Bonnie, > had a sleep study with similar findings. His tonsils and adenoids >were removed at about 5 years old, and it has been wonderful!! He sleeps so >much better and doesn't thrash all around his bed like he did before. We >are very glad that we did it! One piece of advice though. The surgery is >usually done outpatient. Insist that Grace stays over at least one night to >be monitored. did and ended up staying a few days because he >wouldn't drink and some times our kids don't bounce back as fast. >was also readmitted 2 days after he was discharged to get him hydrated again >because once we got home he refused to drink again! (the nurses told him >that if he would drink, he could go home...so he did and he got to go >home...only to refuse to take another drink!) So, just be aware of that. >All of that being said, I don't regret it at all! Very glad that we had it >done. >Good luck =) >Kym...mom to 5 including (8ds) > > > > > >Click reply to all for messages to go to the list. Just hit reply for messages to go to the sender of the message. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2005 Report Share Posted June 8, 2005 had tonsils and part of her adenoids out, and her sleep apnea improved, but she still snores, sleeps in wierd positions, and has episodes of apnea. She is better than she was, and sleeps less restlessly, but it wasn't a total cure. We also had a " stubborn " recovery, spending the night and another long day until our little patient would eat and drink. Fortunately, the nurses said she could eat/drink whatever she wanted, so (in desperation..... I wanted to go home, LOL) a trip by wagon downstairs (in Children's Hospital) to Mcs did the trick....... 1/2 bag of fries and some coke (excellent post-op diet!) totally made her forget that she " can't drink " . Pulled her back upstairs, she demonstrated her skills to the entire nursing station, we packed up, got our discharge papers, and were out of there within an hour. She was 4 at the time. , mom to (9), (7 DS), and (5) kym mac wrote: >Bonnie, > had a sleep study with similar findings. His tonsils and adenoids >were removed at about 5 years old, and it has been wonderful!! He sleeps so >much better and doesn't thrash all around his bed like he did before. We >are very glad that we did it! One piece of advice though. The surgery is >usually done outpatient. Insist that Grace stays over at least one night to >be monitored. did and ended up staying a few days because he >wouldn't drink and some times our kids don't bounce back as fast. >was also readmitted 2 days after he was discharged to get him hydrated again >because once we got home he refused to drink again! (the nurses told him >that if he would drink, he could go home...so he did and he got to go >home...only to refuse to take another drink!) So, just be aware of that. >All of that being said, I don't regret it at all! Very glad that we had it >done. >Good luck =) >Kym...mom to 5 including (8ds) > > > > > >Click reply to all for messages to go to the list. Just hit reply for messages to go to the sender of the message. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2005 Report Share Posted July 25, 2005 Thank you, ette! I appreciate that! Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2005 Report Share Posted July 25, 2005 Thank you very much, Ann. I appreciate your help and your tutelage! Sincerely, Carole PS No, I am going to Framingham somewhere. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2005 Report Share Posted July 25, 2005 Gee, Diane, thank you! I know; I've done a lot of thinking about the word "invalid". I am going to check on its origins, since I do not think that I am not valid! Thanks for caring! What a great group! Sincerely, Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2005 Report Share Posted July 25, 2005 Dear Carole: I'm sending you healing, peaceful thoughts. Hang in there. etteCarole Myron <scolioly2@...> wrote: Today I am a little nervous because tonight I go for a sleep study. This is a follow up to others that I have had, but it is in a totally different place and further away. My husband will drive me and drop me off, and pick me up in the morning. My pulmonologist and my internist have decided that I look very tired (I am) and that my sleep apnea may be worsening. I already use a BiPAP machine with attached oxygen at night, and oxygen from a small unit called a Helios during the day. I believe that the outcome of the test would, at least, cause a change in setting on my night machine. Of course, that would also mean that I am breathing even less during sleep, which is a concern. It is felt that this, too, is caused by my scoliosis. I have had a lot of medical problems caused by this awful back. Anyway, I'm just hoping that someone will cross their fingers for me?Carole M.__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2005 Report Share Posted July 25, 2005 I am sending good thoughts. Are you coming into town? I guess I was a little vague in my " copy and paste description " You copy and paste into a word doc or word perfect doc and then save it has html or txt or a pdf and upload it into the files section. Anyway, Carole you are all set. I also started an entry in the database section that you may want to edit. Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2005 Report Share Posted July 25, 2005 I will do more than cross my fingers Carole. I will be praying that you find the relief you need to get a good nights sleep. Joyce E [ ] Sleep Study Today I am a little nervous because tonight I go for a sleep study. This is a follow up to others that I have had, but it is in a totally different place and further away. My husband will drive me and drop me off, and pick me up in the morning. My pulmonologist and my internist have decided that I look very tired (I am) and that my sleep apnea may be worsening. I already use a BiPAP machine with attached oxygen at night, and oxygen from a small unit called a Helios during the day. I believe that the outcome of the test would, at least, cause a change in setting on my night machine. Of course, that would also mean that I am breathing even less during sleep, which is a concern. It is felt that this, too, is caused by my scoliosis. I have had a lot of medical problems caused by this awful back. Anyway, I'm just hoping that someone will cross their fingers for me?Carole M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2005 Report Share Posted July 25, 2005 Hi Carole, I'll be thinking of you and sending positive thoughts. I have been keeping track of you over these many months when I've been more of a lurker than a poster, and just wanted you to know that I hate that you're having such a tough time, and for such a long time now. You are always such a source of kindness and support and I hope you realize how appreciated you are. All my best, Dianne S. > Today I am a little nervous because tonight I go for a sleep study. > This is a follow up to others that I have had, but it is in a totally > different place and further away. My husband will drive me and drop me > off, and pick me up in the morning. My pulmonologist and my internist > have decided that I look very tired (I am) and that my sleep apnea may > be worsening. I already use a BiPAP machine with attached oxygen at > night, and oxygen from a small unit called a Helios during the day. I > believe that the outcome of the test would, at least, cause a change in > setting on my night machine. Of course, that would also mean that I am > breathing even less during sleep, which is a concern. It is felt that > this, too, is caused by my scoliosis. I have had a lot of medical > problems caused by this awful back. Anyway, I'm just hoping that > someone will cross their fingers for me? > > Carole M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2005 Report Share Posted July 26, 2005 Carole, As I lay me down to sleep I will hope you are visting pleasantly with the sheep...and I also hope you get good results. Sleep well, Ca, > Today I am a little nervous because tonight I go for a sleep study. > This is a follow up to others that I have had, but it is in a totally > different place and further away. My husband will drive me and drop me > off, and pick me up in the morning. My pulmonologist and my internist > have decided that I look very tired (I am) and that my sleep apnea may > be worsening. I already use a BiPAP machine with attached oxygen at > night, and oxygen from a small unit called a Helios during the day. I > believe that the outcome of the test would, at least, cause a change in > setting on my night machine. Of course, that would also mean that I am > breathing even less during sleep, which is a concern. It is felt that > this, too, is caused by my scoliosis. I have had a lot of medical > problems caused by this awful back. Anyway, I'm just hoping that > someone will cross their fingers for me? > > Carole M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2005 Report Share Posted July 26, 2005 Hi Carole, I don't know whether these links will be of any help to you to share with your docs: http://gbppa.org/oxygen.htm http://erj.ersjournals.com/cgi/content/full/20/2/480 They were posted on my forum by someone who has been put on BiPAP, but found herself unable to get on with it. It seems that in severely restrictive lung disease as a consequence of scoliosis, you may need a much lower exhalation pressure in order to be able to breath out. Another member showed the links to her respiratory doc, who has now reduced her exhalation pressure significantly, after previously refusing, and will be referring her to a different doc who deals with both respiratory and sleep disorders. I'm sure either of them would be happy to talk with you if you sign up (their screen names are amazed and jfkimberly), but I can also pass on your email address to them if that would be more helpful. I'll point them both in the direction of this group in any case ) Hope the study goes well and you find out what is needed from it. titch -- Something unknown is doing we don't know what Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2005 Report Share Posted July 26, 2005 Cam, Thank you (and everyone) for all the good thoughts for last night. I only hope that I slept long enough to get results! I did come home and fall into my own bed for several hours of "real" sleep. The test was one of the "kindest" studies I've had, but very complicated! I should hear in two or three weeks. Gosh, I hate waiting like that! Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2005 Report Share Posted July 26, 2005 In a message dated 7/26/2005 5:40:31 AM Eastern Standard Time, oojackapivvy@... writes: http://erj.ersjournals.com/cgi/content/full/20/2/480 Titch, Thank you so much for the articles! I will say that my doctor is certified in sleep disorders, so I do trust him. I went to both sites, and found the info very interesting and am printing them out for him to see. We know that I do have sleep apnea, and the new test even inserts a "dead" space, which is supposed to help catch other problems. I would be very happy to speak with the other people you know with this problem, and you may give them my address, OK? I really appreciate your taking the time for me! Sincerely, Carole M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2005 Report Share Posted July 28, 2005 Titch, I can't remember if I thanked you for the links you sent. I am appreciative of any and all information that will help me. I will say that, in past tests, I was told that I am "off the charts" with my apnea! So far, my machines have not caused me any anxiety. I think that some people have problems with the masks. I use a full face mask. My husband has C-PAP and had used nasal cannulae. He now has voluntarily moved to the full face mask, and does like it better. Is he weird? I don't think so! He fought the whole process for quite a while. I really don't know why he likes the full face mask! Again, thank you! Everyone here is so helpful! What a gang! Carole M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2005 Report Share Posted August 2, 2005 Glad the articles were interesting at least, Carole ) I've passed on your email address as I said I would, too. I don't think it is so odd to prefer a full face mask - when I had the revision, the only thing that made me glad to move to the nasal cannulae was that the face mask led to my chin drying out so much that the skin was just raw, so I had a huge scab there. Of course, every time anyone did anything for me, they put things out of my reach, so even when I was non-gaga enough to think about putting some vaseline on it, I couldn't get at it *lol* Generally speaking, though, the mask was no problem. titch (*still* trying to catch up on replying to things!) -- Something unknown is doing we don't know what Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2005 Report Share Posted August 2, 2005 Thank you, Titch! You are so lucky to be through with revision, etc.! It looks as though I am going nowhere with such things! However, I shall await some new emails, thanks to you! Sincerely, Carole M. P.S. I know what you mean about people putting things out of reach in the hospital. Even out of the hospital, sometimes someone will hold my cane "for a minute" and wander off, leaving me stranded once again! Ha! Ha! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2005 Report Share Posted November 25, 2005 Thanks for sharing Jill - The only Drs we see are an ENT and our GP, any suggestions as to who is better to ask in regards to Trent's sleepiness - Keep smiling Jan, mother of Trent 21yo w/DS from the LandDownUnder Sleep study Below is the reply I received from the developmental pediatrician who runs our Ds clinic in regards to sleep disorders/sleep studies. Just FYI for those who may be interested. Jill Mom to Mac & Kit Jill, It's fine to e-mail questions - easier than getting a hold of me by phone. Sleep disturbances are very common in people with Down syndrome. One of the best studies on children with DS found obstructive sleep apnea in 45%, another study found an even higher percentage with fragmented sleep, some not related to obstructive sleep apnea. So I have a very low threshold in recommending a sleep study, although many parents do not follow through. I would definitely recommend it for your kids because of the restless sleep and sleeping with their heads between their feet - that is often an attempt to open up the airway, because the floppy soft tissues fall forward when they do that. And I think it is a good idea in kids with a short attention span, overactivity, and other behavior problems - when kids are chronically tired they often go into " overdrive " instead of being lethargic like most adults get when they are sleep deprived. I follow a couple of kids whose behavior was definitely improved (but not perfect) after their sleep problems were treated. My Sara does not have any restless sleep or unusual positions, but we are going to the sleep clinic in a couple of weeks because of her ADHD diagnosis. I would love to not have to give her Ritalin! Dr. Ram Reddy, a pulmonolgist, runs a pediatric sleep clinic here at ST.Vs and that is where I would recommend starting. And yes, there is talk among the DS clinic directors about changing the health care recommendations to include screening all children with DS with a sleep study - there is still a lot of discussion about what age, how often, etc. Hope this info helps - good luck! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2005 Report Share Posted November 25, 2005 Now I feel bad about canceling Nic's study but I knew he would absolutely positively not cooperate! It would be a nightmare for both of us! Maybe when he's older...... Di Sleep study > > Below is the reply I received from the developmental pediatrician who runs > our Ds clinic in regards to sleep disorders/sleep studies. Just FYI for > those who may be interested. > > Jill > Mom to Mac & Kit > > > Jill, > It's fine to e-mail questions - easier than getting a hold of me by phone. > Sleep disturbances are very common in people with Down syndrome. One of > the > best studies on children with DS found obstructive sleep apnea in 45%, > another study found an even higher percentage with fragmented sleep, some > not related to obstructive sleep apnea. So I have a very low threshold in > recommending a sleep study, although many parents do not follow through. > I > would definitely recommend it for your kids because of the restless sleep > and sleeping with their heads between their feet - that is often an > attempt > to open up the airway, because the floppy soft tissues fall forward when > they do that. And I think it is a good idea in kids with a short > attention > span, overactivity, and other behavior problems - when kids are > chronically > tired they often go into " overdrive " instead of being lethargic like most > adults get when they are sleep deprived. I follow a couple of kids whose > behavior was definitely improved (but not perfect) after their sleep > problems were treated. My Sara does not have any restless sleep or > unusual > positions, but we are going to the sleep clinic in a couple of weeks > because > of her ADHD diagnosis. I would love to not have to give her Ritalin! Dr. > Ram Reddy, a pulmonolgist, runs a pediatric sleep clinic here at ST.Vs and > that is where I would recommend starting. And yes, there is talk among > the > DS clinic directors about changing the health care recommendations to > include screening all children with DS with a sleep study - there is > still > a lot of discussion about what age, how often, etc. Hope this info > helps - > good luck! > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2005 Report Share Posted November 25, 2005 Di, Although her report came back stating, " Child kicked, bit, scratched and screamed " while they tried to connect the equipment, there was enough info recorded that showed Karrie is having trouble at night. I'm praying now that after we see the neurologist and pulmonary spec. that Karrie can come off some of her medications. Sue mom to Kate 16 and Karrie 9 w/ds and other issues -- Re: Sleep study Now I feel bad about canceling Nic's study but I knew he would absolutely positively not cooperate! It would be a nightmare for both of us! Maybe when he's older...... Di Sleep study > > Below is the reply I received from the developmental pediatrician who runs > our Ds clinic in regards to sleep disorders/sleep studies. Just FYI for > those who may be interested. > > Jill > Mom to Mac & Kit > > > Jill, > It's fine to e-mail questions - easier than getting a hold of me by phone. > Sleep disturbances are very common in people with Down syndrome. One of > the > best studies on children with DS found obstructive sleep apnea in 45%, > another study found an even higher percentage with fragmented sleep, some > not related to obstructive sleep apnea. So I have a very low threshold in > recommending a sleep study, although many parents do not follow through. > I > would definitely recommend it for your kids because of the restless sleep > and sleeping with their heads between their feet - that is often an > attempt > to open up the airway, because the floppy soft tissues fall forward when > they do that. And I think it is a good idea in kids with a short > attention > span, overactivity, and other behavior problems - when kids are > chronically > tired they often go into " overdrive " instead of being lethargic like most > adults get when they are sleep deprived. I follow a couple of kids whose > behavior was definitely improved (but not perfect) after their sleep > problems were treated. My Sara does not have any restless sleep or > unusual > positions, but we are going to the sleep clinic in a couple of weeks > because > of her ADHD diagnosis. I would love to not have to give her Ritalin! Dr. > Ram Reddy, a pulmonolgist, runs a pediatric sleep clinic here at ST.Vs and > that is where I would recommend starting. And yes, there is talk among > the > DS clinic directors about changing the health care recommendations to > include screening all children with DS with a sleep study - there is > still > a lot of discussion about what age, how often, etc. Hope this info > helps - > good luck! > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2005 Report Share Posted November 30, 2005 Hi Barb, My Micah wears orthotics because his feet turn in. I was always worried about his feet but the orthoped told me it is his knees they worry about and that a lot of kids with DS end up having knee surgery later in life. The orthotics on his feet are suppose to keep his knees alligned. Go figure! Loree Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2005 Report Share Posted November 30, 2005 Micah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2005 Report Share Posted November 30, 2005 In a message dated 11/30/2005 5:08:51 P.M. Eastern Standard Time, cbbtdillon@... writes: When you guys say orthotics, what do you mean Sorry I hit the send button on the last e-mail. Micah's orthotics are two plastic supports for his feet and ankles and fit into his shoe. His feet turn in though not out like your son's. Come on guys, any one else have this problem with their child to help Barb out! Loree Quote Link to comment Share on other sites More sharing options...
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