Guest guest Posted June 14, 2008 Report Share Posted June 14, 2008 I have a "taco kid" too, but I had no idea how common it was (love this group for the great info.). My 7 year old was diagonsed with Obstructive Sleep Apnea and Dissomnia in a sleep study. He seems to breathe better since his T & A, but still a flopper. I check on him around 11 or 12 at night, and he is often sitting up or in some other strange position, often no longer on his bed, and I just think that he is getting a terrible night's sleep. We've tried the Cpap, and he was able to tolerate it for about an hour, but with movement in his sleep, he would wake up, freak out that it was on his face, and rip it off. Talk about not getting enough sleep -- we all got less. We stopped using it since Ben was getting his tonsils out. Now that he has, we need another sleep study to see if he still needs it, but oh my! I don't really want to put him through all that wiring again. He really hated that. Sooo -- What do you all do when you find your little taco? I bring mine into bed with me where I can make sure he is lying on his back. He does move all over the bed, but if he sits up, I can lie him back down. I worry that he's not getting into his deeper sleep waves when he's sitting up, but I guess he's doing that because it helps him to breathe better. What's the answer? I do have some time release melatonin that I'm planning to try--it was recommended by my pedi as well as the sleep doctor. What are the rest of you doing about it? Writing this, I realize we need to go back for one more sleep study to see what the experts recommend as well. Paige DownSyndromeInfoExchange wrote: DownSyndromeInfoExchange Messages In This Digest (2 Messages) 1.1. Re: Sleep disorders From: Bolduc 2.1. Re: Bolduc - Sleep disorders From: Bolduc View All Topics | Create New Topic Messages 1.1. Re: Sleep disorders Posted by: " Bolduc" jhunter5431@... jezecasmom Fri Jun 13, 2008 8:57 pm (PDT) I really feel bad for all of you going thru this and it seems I have it so easy. Wish I could help you. [DownSyndromeInfoEx change] Sleep disordersHi-My daughter was just diagnosed with sleep arousal disorder and disorder of the maintenace of sleep. We did a sleep study to rule of apnea. The report says that she only had one apnea and 11 hypopneas but that was normal. I am waiting to talk to the doctor and then I hope I will get more info about what if anything we can do.My daughter is 4 1/2 and has been waking up everynight and that means that we are waking up too. I am so tired of not getting enough sleep. She has reflux, if she doesnt have bad sleep apnea, then could it be reflux causing her sleep disorders.Anyone have the same issues?thank youDawn Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (36) Recent Activity 4 New MembersVisit Your Group Meditation and Lovingkindness A Yahoo! Group to share and learn. Yahoo! Health Achy Joint? Common arthritis myths debunked. Yahoo! Groups Find balance between nutrition, activity & well-being. Need to Reply? Click one of the "Reply" links to respond to a specific message in the Daily Digest. Create New Topic | Visit Your Group on the Web Messages | Files | Photos | Links 1. Anything suggested on this site or opinions offered are not intended to be medical or pharmaceutical advice or otherwise take the place of your physicians orders, nor to diagnose or treat your specific health problems. Please discuss all methods of treatment with your practitioner. 2 *****WARNING: Flames and inappropriate treatment of other members on this list will NOT be tolerated.3. Our HOME page is http://groups.yahoo.com/group/DownSyndromeInfoExchange where all archived posts as well as photos,links, files, articles etc. are found. You "MUST" have a Yahoo ID and pass word to enter it.To contact Carol, owner & moderatordoihavtasay@...To contact Kathy, owner & moderatorkathy_r@...To contact , owner & moderatornoliptoday@... MARKETPLACE Blockbuster is giving away a FREE trial of - Blockbuster Total Access. Change settings via the Web (Yahoo! ID required) Change settings via email: Switch delivery to Individual | Switch format to Traditional Visit Your Group | Yahoo! Groups Terms of Use | Unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2008 Report Share Posted June 14, 2008 I have a "taco kid" too, but I had no idea how common it was (love this group for the great info.). My 7 year old was diagonsed with Obstructive Sleep Apnea and Dissomnia in a sleep study. He seems to breathe better since his T & A, but still a flopper. I check on him around 11 or 12 at night, and he is often sitting up or in some other strange position, often no longer on his bed, and I just think that he is getting a terrible night's sleep. We've tried the Cpap, and he was able to tolerate it for about an hour, but with movement in his sleep, he would wake up, freak out that it was on his face, and rip it off. Talk about not getting enough sleep -- we all got less. We stopped using it since Ben was getting his tonsils out. Now that he has, we need another sleep study to see if he still needs it, but oh my! I don't really want to put him through all that wiring again. He really hated that. Sooo -- What do you all do when you find your little taco? I bring mine into bed with me where I can make sure he is lying on his back. He does move all over the bed, but if he sits up, I can lie him back down. I worry that he's not getting into his deeper sleep waves when he's sitting up, but I guess he's doing that because it helps him to breathe better. What's the answer? I do have some time release melatonin that I'm planning to try--it was recommended by my pedi as well as the sleep doctor. What are the rest of you doing about it? Writing this, I realize we need to go back for one more sleep study to see what the experts recommend as well. Paige DownSyndromeInfoExchange wrote: DownSyndromeInfoExchange Messages In This Digest (2 Messages) 1.1. Re: Sleep disorders From: Bolduc 2.1. Re: Bolduc - Sleep disorders From: Bolduc View All Topics | Create New Topic Messages 1.1. Re: Sleep disorders Posted by: " Bolduc" jhunter5431@... jezecasmom Fri Jun 13, 2008 8:57 pm (PDT) I really feel bad for all of you going thru this and it seems I have it so easy. Wish I could help you. [DownSyndromeInfoEx change] Sleep disordersHi-My daughter was just diagnosed with sleep arousal disorder and disorder of the maintenace of sleep. We did a sleep study to rule of apnea. The report says that she only had one apnea and 11 hypopneas but that was normal. I am waiting to talk to the doctor and then I hope I will get more info about what if anything we can do.My daughter is 4 1/2 and has been waking up everynight and that means that we are waking up too. I am so tired of not getting enough sleep. She has reflux, if she doesnt have bad sleep apnea, then could it be reflux causing her sleep disorders.Anyone have the same issues?thank youDawn Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (36) Recent Activity 4 New MembersVisit Your Group Meditation and Lovingkindness A Yahoo! Group to share and learn. Yahoo! Health Achy Joint? Common arthritis myths debunked. Yahoo! Groups Find balance between nutrition, activity & well-being. Need to Reply? Click one of the "Reply" links to respond to a specific message in the Daily Digest. Create New Topic | Visit Your Group on the Web Messages | Files | Photos | Links 1. Anything suggested on this site or opinions offered are not intended to be medical or pharmaceutical advice or otherwise take the place of your physicians orders, nor to diagnose or treat your specific health problems. Please discuss all methods of treatment with your practitioner. 2 *****WARNING: Flames and inappropriate treatment of other members on this list will NOT be tolerated.3. Our HOME page is http://groups.yahoo.com/group/DownSyndromeInfoExchange where all archived posts as well as photos,links, files, articles etc. are found. You "MUST" have a Yahoo ID and pass word to enter it.To contact Carol, owner & moderatordoihavtasay@...To contact Kathy, owner & moderatorkathy_r@...To contact , owner & moderatornoliptoday@... MARKETPLACE Blockbuster is giving away a FREE trial of - Blockbuster Total Access. Change settings via the Web (Yahoo! ID required) Change settings via email: Switch delivery to Individual | Switch format to Traditional Visit Your Group | Yahoo! Groups Terms of Use | Unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2008 Report Share Posted June 14, 2008 Well ....... We could work out a deal on trading kids for a while.... If you really wanna help! "Jules" Romero -- Re: [DownSyndromeInfoExchange] Sleep disorders I really feel bad for all of you going thru this and it seems I have it so easy. Wish I could help you. [DownSyndromeInfoEx change] Sleep disorders Hi- My daughter was just diagnosed with sleep arousal disorder and disorder of the maintenace of sleep. We did a sleep study to rule of apnea. The report says that she only had one apnea and 11 hypopneas but that was normal. I am waiting to talk to the doctor and then I hope I will get more info about what if anything we can do. My daughter is 4 1/2 and has been waking up everynight and that means that we are waking up too. I am so tired of not getting enough sleep. She has reflux, if she doesnt have bad sleep apnea, then could it be reflux causing her sleep disorders. Anyone have the same issues? thank you Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2008 Report Share Posted June 14, 2008 , My son had his T & A removed. It was better but still woke up once. We have had sleep studies done and he is only in REM for 20 seconds a night. This was all before the age of 2. He has been on time released melatonin since then then and gets about 9 hours of sleep a night. Now that the sun is up early, we also have to blacken his room by covering his windows and we even play a static CD during the night. Without the last 2 is fine be he really enjoys the CD. Saw mass improvement with the melatonin. We have discussed this with his neurologist (sp sorry its late) and he said if that works for him then use it and gave me the max dose and told me to play with it as it may need to be upped and lowered as needed and that I was a better judge by his behavior if its working then he was. He also said that if it did not he would give a prescription for a sleep aid. He did understand that I wanted more natural. He agreed. His body may not produce enough to get good REM sleep so I will help him out with that. We did make sure it was not another medical issue first such as T & A and heart. WEndy B --- D wrote: > > Hi- > My daughter was just diagnosed with sleep arousal > disorder and disorder of the maintenace of > sleep. We did a sleep study to rule of > apnea. The report says that she only had one > apnea and 11 hypopneas but that was normal. I > am waiting to talk to the doctor and then I hope I > will get more info about what if anything we can do. > My daughter is 4 1/2 and has been waking > up everynight and that means that we are waking > up too. I am so tired of not getting enough > sleep. She has reflux, if she doesnt have bad > sleep apnea, then could it be reflux causing her > sleep disorders. > Anyone have the same issues? > thank you > Dawn > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2008 Report Share Posted June 14, 2008 , My son had his T & A removed. It was better but still woke up once. We have had sleep studies done and he is only in REM for 20 seconds a night. This was all before the age of 2. He has been on time released melatonin since then then and gets about 9 hours of sleep a night. Now that the sun is up early, we also have to blacken his room by covering his windows and we even play a static CD during the night. Without the last 2 is fine be he really enjoys the CD. Saw mass improvement with the melatonin. We have discussed this with his neurologist (sp sorry its late) and he said if that works for him then use it and gave me the max dose and told me to play with it as it may need to be upped and lowered as needed and that I was a better judge by his behavior if its working then he was. He also said that if it did not he would give a prescription for a sleep aid. He did understand that I wanted more natural. He agreed. His body may not produce enough to get good REM sleep so I will help him out with that. We did make sure it was not another medical issue first such as T & A and heart. WEndy B --- D wrote: > > Hi- > My daughter was just diagnosed with sleep arousal > disorder and disorder of the maintenace of > sleep. We did a sleep study to rule of > apnea. The report says that she only had one > apnea and 11 hypopneas but that was normal. I > am waiting to talk to the doctor and then I hope I > will get more info about what if anything we can do. > My daughter is 4 1/2 and has been waking > up everynight and that means that we are waking > up too. I am so tired of not getting enough > sleep. She has reflux, if she doesnt have bad > sleep apnea, then could it be reflux causing her > sleep disorders. > Anyone have the same issues? > thank you > Dawn > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2008 Report Share Posted June 15, 2008 I finally spoke to my daughter's ENT doctor and he told me that we have to see another specialist to talk about medications. I am going to ask about melatonin. My husband has been holding her and singing her to sleep since she was born but we think that this is making it difficult for her to fall back asleep on her own when she wakes up. Last night he just sang to her in her room while she was in her bed. She got out of bed 7 times but we just kept putting her back in her own bed. The Super Nanny would have been proud. Besides melatonin, what other meds to they give? I really would rather stay away from medications unless we really have to. Hope all the dads are having a great father's day!!! Dawn> > Hi-> My daughter was just diagnosed with sleep arousal> disorder and disorder of the maintenace of> sleep. We did a sleep study to rule of> apnea. The report says that she only had one> apnea and 11 hypopneas but that was normal. I> am waiting to talk to the doctor and then I hope I> will get more info about what if anything we can do.> My daughter is 4 1/2 and has been waking> up everynight and that means that we are waking> up too. I am so tired of not getting enough> sleep. She has reflux, if she doesnt have bad> sleep apnea, then could it be reflux causing her> sleep disorders.> Anyone have the same issues?> thank you> Dawn> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2008 Report Share Posted June 15, 2008 HI. Im Sheryl and Im Mom to 4 kids, the youngest of whom is Chaim, 3yo with DS. Im reading all of this and getting really nervous. Chaim goes to sleep around 8:30 and wakes up around 7:30. He naps in the afternoon for about 1.5-2 hrs. He rarely wakes up! Am I to expect that he will begin to have sleep interruptions? I read the article that someone posted and it got me thinking...how would I know if he was having too much of one sleep cycle and not enough of another when he doesnt wake up. I still use the baby monitor so I would hear him if he did. Sheryl > > > From: Judy <judyrhomeyahoo (DOT) com> > Subject: Re: [DownSyndromeInfoEx change] Sleep disorders > To: DownSyndromeInfoExc hange@yahoogroup s.com > Date: Friday, June 13, 2008, 8:33 AM > > > My son Reece is 3 yrs old and doesn't sleep through the > night. He'll wake > up 1 to 2 times a night. Yes, it has gotten old and > it's gotten to a point > where if he gets up once a night, we call it a good night! > It's all > relative!!! I read a sleep study recently where they found > that children > with down syndrome wake more often and spend less time in > REM sleep than the > average child. > > Here's the link: > http://www.aasmnet. org/Articles. aspx?id=903 > > Judy > [DownSyndromeInfoEx change] Sleep disorders > Hi- > My daughter was just diagnosed with sleep arousal disorder > and disorder of > the maintenace of sleep. We did a sleep study to rule of > apnea. The report > says that she only had one apnea and 11 hypopneas but that > was normal. I am > waiting to talk to the doctor and then I hope I will get > more info about > what if anything we can do. > My daughter is 4 1/2 and has been waking up everynight and > that means that > we are waking up too. I am so tired of not getting enough > sleep. She has > reflux, if she doesnt have bad sleep apnea, then could it > be reflux causing > her sleep disorders. > Anyone have the same issues? > thank you > Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2008 Report Share Posted June 15, 2008 HI. Im Sheryl and Im Mom to 4 kids, the youngest of whom is Chaim, 3yo with DS. Im reading all of this and getting really nervous. Chaim goes to sleep around 8:30 and wakes up around 7:30. He naps in the afternoon for about 1.5-2 hrs. He rarely wakes up! Am I to expect that he will begin to have sleep interruptions? I read the article that someone posted and it got me thinking...how would I know if he was having too much of one sleep cycle and not enough of another when he doesnt wake up. I still use the baby monitor so I would hear him if he did. Sheryl > > > From: Judy <judyrhomeyahoo (DOT) com> > Subject: Re: [DownSyndromeInfoEx change] Sleep disorders > To: DownSyndromeInfoExc hange@yahoogroup s.com > Date: Friday, June 13, 2008, 8:33 AM > > > My son Reece is 3 yrs old and doesn't sleep through the > night. He'll wake > up 1 to 2 times a night. Yes, it has gotten old and > it's gotten to a point > where if he gets up once a night, we call it a good night! > It's all > relative!!! I read a sleep study recently where they found > that children > with down syndrome wake more often and spend less time in > REM sleep than the > average child. > > Here's the link: > http://www.aasmnet. org/Articles. aspx?id=903 > > Judy > [DownSyndromeInfoEx change] Sleep disorders > Hi- > My daughter was just diagnosed with sleep arousal disorder > and disorder of > the maintenace of sleep. We did a sleep study to rule of > apnea. The report > says that she only had one apnea and 11 hypopneas but that > was normal. I am > waiting to talk to the doctor and then I hope I will get > more info about > what if anything we can do. > My daughter is 4 1/2 and has been waking up everynight and > that means that > we are waking up too. I am so tired of not getting enough > sleep. She has > reflux, if she doesnt have bad sleep apnea, then could it > be reflux causing > her sleep disorders. > Anyone have the same issues? > thank you > Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 That would be fun !! [DownSyndromeInfoEx change] Sleep disorders Hi- My daughter was just diagnosed with sleep arousal disorder and disorder of the maintenace of sleep. We did a sleep study to rule of apnea. The report says that she only had one apnea and 11 hypopneas but that was normal. I am waiting to talk to the doctor and then I hope I will get more info about what if anything we can do. My daughter is 4 1/2 and has been waking up everynight and that means that we are waking up too. I am so tired of not getting enough sleep. She has reflux, if she doesnt have bad sleep apnea, then could it be reflux causing her sleep disorders. Anyone have the same issues? thank you Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 Hi Sheryl, I think that you are a lucky one. Your child seems to be getting a nice amount of sleep. was a napper until he was about 6. So Enjoy that !!!!! Like with any child, they reach a point that naps become a thing of the past. That is just normal. Unfortunately for us moms. Hehehehe. I wouldn't worry about my child at all if he/she was getting too much sleep, or more sleep than what some of us see our kids getting. Remember we are the ones who are having the issues. We are the ones wishing for the sleeping kids. You are the blessed ones. started out like that. He slept a lot, just in strange positions, and we had to hike up the head of his baby bed for the reflux, or he was in his car seat. But he did sleep a lot. He took 1-2 naps a day. Now at 9, those days are gone. Now he will sleep about 8-9.5 hours a night but its restless, and its up and down, and it moving positions all night, and its taco sleeping, etc..... So enjoy it while you have it. Don't worry about the future. If you join the taco sleepers moms club later than welcome. Until then, know we are all green with envy. Hehehehe. Have a great day ! "Jules" Romero -- Re: [DownSyndromeInfoEx change] Sleep disorders > To: DownSyndromeInfoExc hange@yahoogroup s.com > Date: Friday, June 13, 2008, 8:33 AM > > > My son Reece is 3 yrs old and doesn't sleep through the> night. He'll wake> up 1 to 2 times a night. Yes, it has gotten old and> it's gotten to a point> where if he gets up once a night, we call it a good night! > It's all> relative!!! I read a sleep study recently where they found> that children> with down syndrome wake more often and spend less time in> REM sleep than the> average child. > > Here's the link: > http://www.aasmnet. org/Articles. aspx?id=903> > Judy > [DownSyndromeInfoEx change] Sleep disorders > Hi- > My daughter was just diagnosed with sleep arousal disorder> and disorder of> the maintenace of sleep. We did a sleep study to rule of> apnea. The report> says that she only had one apnea and 11 hypopneas but that> was normal. I am> waiting to talk to the doctor and then I hope I will get> more info about> what if anything we can do. > My daughter is 4 1/2 and has been waking up everynight and> that means that> we are waking up too. I am so tired of not getting enough> sleep. She has> reflux, if she doesnt have bad sleep apnea, then could it> be reflux causing> her sleep disorders. > Anyone have the same issues? > thank you > Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 Hi Sheryl, I think that you are a lucky one. Your child seems to be getting a nice amount of sleep. was a napper until he was about 6. So Enjoy that !!!!! Like with any child, they reach a point that naps become a thing of the past. That is just normal. Unfortunately for us moms. Hehehehe. I wouldn't worry about my child at all if he/she was getting too much sleep, or more sleep than what some of us see our kids getting. Remember we are the ones who are having the issues. We are the ones wishing for the sleeping kids. You are the blessed ones. started out like that. He slept a lot, just in strange positions, and we had to hike up the head of his baby bed for the reflux, or he was in his car seat. But he did sleep a lot. He took 1-2 naps a day. Now at 9, those days are gone. Now he will sleep about 8-9.5 hours a night but its restless, and its up and down, and it moving positions all night, and its taco sleeping, etc..... So enjoy it while you have it. Don't worry about the future. If you join the taco sleepers moms club later than welcome. Until then, know we are all green with envy. Hehehehe. Have a great day ! "Jules" Romero -- Re: [DownSyndromeInfoEx change] Sleep disorders > To: DownSyndromeInfoExc hange@yahoogroup s.com > Date: Friday, June 13, 2008, 8:33 AM > > > My son Reece is 3 yrs old and doesn't sleep through the> night. He'll wake> up 1 to 2 times a night. Yes, it has gotten old and> it's gotten to a point> where if he gets up once a night, we call it a good night! > It's all> relative!!! I read a sleep study recently where they found> that children> with down syndrome wake more often and spend less time in> REM sleep than the> average child. > > Here's the link: > http://www.aasmnet. org/Articles. aspx?id=903> > Judy > [DownSyndromeInfoEx change] Sleep disorders > Hi- > My daughter was just diagnosed with sleep arousal disorder> and disorder of> the maintenace of sleep. We did a sleep study to rule of> apnea. The report> says that she only had one apnea and 11 hypopneas but that> was normal. I am> waiting to talk to the doctor and then I hope I will get> more info about> what if anything we can do. > My daughter is 4 1/2 and has been waking up everynight and> that means that> we are waking up too. I am so tired of not getting enough> sleep. She has> reflux, if she doesnt have bad sleep apnea, then could it> be reflux causing> her sleep disorders. > Anyone have the same issues? > thank you > Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2008 Report Share Posted June 17, 2008 I do not know if it is safe for children, but I take valerian root (natural muscle relaxant) to help me relax and get ready for bed. I would ask my pediatrician before I tried it on my kid though. Dinkins-Borkowski; Nolan(5) nocf, Phoebe(3) Ds & cf Phoebe Updates CLICK HERE " The future belongs to those who believe in the beauty of their dreams. " – Eleanor Roosevelt From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of D Sent: Sunday, June 15, 2008 12:32 PM To: DownSyndromeInfoExchange Subject: Re: [DownSyndromeInfoExchange] Sleep disorders I finally spoke to my daughter's ENT doctor and he told me that we have to see another specialist to talk about medications. I am going to ask about melatonin. My husband has been holding her and singing her to sleep since she was born but we think that this is making it difficult for her to fall back asleep on her own when she wakes up. Last night he just sang to her in her room while she was in her bed. She got out of bed 7 times but we just kept putting her back in her own bed. The Super Nanny would have been proud. Besides melatonin, what other meds to they give? I really would rather stay away from medications unless we really have to. Hope all the dads are having a great father's day!!! Dawn > > Hi- > My daughter was just diagnosed with sleep arousal > disorder and disorder of the maintenace of > sleep. We did a sleep study to rule of > apnea. The report says that she only had one > apnea and 11 hypopneas but that was normal. I > am waiting to talk to the doctor and then I hope I > will get more info about what if anything we can do. > My daughter is 4 1/2 and has been waking > up everynight and that means that we are waking > up too. I am so tired of not getting enough > sleep. She has reflux, if she doesnt have bad > sleep apnea, then could it be reflux causing her > sleep disorders. > Anyone have the same issues? > thank you > Dawn > > > Quote Link to comment Share on other sites More sharing options...
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