Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 Inga I have noticed that Storm also snores and sometimes " catches his breath " in his sleep. (Is this apnea?) I have not had a chance to talk to the doctor about it because of all of our moving and such with no job, etc. It has been a slight concern. I guess the next time we are at the dr. we will bring it up! Carmen, mom to an almost 7 year old Storm and 40# 42 inches Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2002 Report Share Posted August 17, 2002 I think so. Tim was so bad earlier in the infection, he used to sit up to try to catch his breath sometimes! She did say she wouldn't be surprised because of his anatomy with his short jaw and tongue. At 05:25 AM 8/17/2002 +0000, you wrote: > > Inga > I have noticed that Storm also snores and sometimes " catches his > breath " in his sleep. (Is this apnea?) I have not had a chance to > talk to the doctor about it because of all of our moving and such > with no job, etc. It has been a slight concern. I guess the next > time we are at the dr. we will bring it up! > Carmen, mom to an almost 7 year old Storm and 40# 42 inches > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2002 Report Share Posted August 17, 2002 Inga, My story may not be of help because Jon had a physical problem that caused his sleep apnea. Jon used to snore and his chest would cave many times until he finally opened his mouth and gasped for air. You could tell that he was not able to get enough air in through his nose. He has had this ever since he was born. He has what is called choanal atresia, it means that there is no opening in oneside of his nose. He had surgery when he was 18 months to make a hole but he still had problems. Last year in November he had the surgery done again at Cleveland clinic and it has been much better. The ENT said that his adnoids were not large and he did not remove them. He did cut his opening bigger and basically increased the size of the entire nasal canal. I have heard of this being done to people with asthma who get chronic sinus infections. That being said, I doubt any of the sleep apnea problems you are seeing are anything like Jons. However I will tell you that I don't think snoring in it self is a problem. I would watch for his chest caving in and him having to gasp for air by opening his mouth. Sometimes it only happens at certain times of the night when the child is breathing through a particular side of his nose. You could always take Tim to an ENT and they can scope his nose very easily to see what the canal looks like. Pattie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2002 Report Share Posted August 17, 2002 He did gasp (when he was sicker, he bolted upright in bed and struggled for air) and saw an ENT who temporarily perscribed a nasal spray and another round of antibiotics, after asking me if I minded - she said sometimes the tonsils were swollen because of a stubborn infection. She's concerned with his anatomy about taking the tonsils out. She's scheduling a sleep study to see how serious it is. Inga At 12:04 AM 8/18/2002 +0000, you wrote: > > Inga, > > My story may not be of help because Jon had a physical problem > that caused his sleep apnea. Jon used to snore and his chest would > cave many times until he finally opened his mouth and gasped for > air. You could tell that he was not able to get enough air in > through his nose. He has had this ever since he was born. He has > what is called choanal atresia, it means that there is no opening in > oneside of his nose. He had surgery when he was 18 months to make a > hole but he still had problems. Last year in November he had the > surgery done again at Cleveland clinic and it has been much better. > The ENT said that his adnoids were not large and he did not remove > them. He did cut his opening bigger and basically increased the size > of the entire nasal canal. I have heard of this being done to people > with asthma who get chronic sinus infections. > > That being said, I doubt any of the sleep apnea problems you are > seeing are anything like Jons. However I will tell you that I don't > think snoring in it self is a problem. I would watch for his chest > caving in and him having to gasp for air by opening his mouth. > Sometimes it only happens at certain times of the night when the > child is breathing through a particular side of his nose. You could > always take Tim to an ENT and they can scope his nose very easily to > see what the canal looks like. > > Pattie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2002 Report Share Posted August 21, 2002 Inga, Hmmm, I'm trying to remember about her voice pitch after surgery. I don't think it changed at all, but I think she was a bit less nasal. She didn't grow completely out of the vocal problems until after the palate surgery when she was nine & she grew more. And by then (upper elementary / jr. high) the speech therapist was more concerned with her lateral lisp. As far as bone age - Charissa is due for another check, but a year ago it was still delayed 2 years. Not sure if this is connected with her other medical issues or what. I haven't shared much about our progress / journey as I have been waiting for some test results & answers. We have a *major* appointment the end of September & I hope to know more then. Chris > Date: Tue, 20 Aug 2002 15:48:48 -0700 > > Subject: Re: Re:sleep apnea > > Thanks for your email - you gave us a 'heads up' on a lot of things. > > I'm not sure if he's tonguetied - his tongue looks short to me, though. And > the ENT agreed when I called it a short tongue... > > Did the pitch of your daughter's voice go up after the surgery? > > Tim's bone age is already getting close to his chronological age - isn't this > the way non-RSS kids normally are? I'm wanting the endo to check him for > puberty hormones, which he thinks is silly. I only noticed the underarm odor > once a few months ago, so maybe we aren't close enough... > > Inga > ..................................... To get your own free faithmail account, click here to join: http://www.womenoffaith.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 As well as being diagnosed with RLS, has any one been diagnosed with Sleep Apnea? Sleep Apnea and Sarcoidosis seem to go hand in hand since it has to do with sleeping and not getting enough oxygen when we sleep. sharon, Sleep apnea is not specific to sarcoidosis. One of the biggest group of people to develop SA is those who are obese (all of us on prednisone), or just plain to heavy. Medications, enlarged tonsils, narrow air passageways in the sinuses, can all cause SA. Here is a good site to explain SA. http://aolsvc.health.webmd.aol.com/hw/sleep_disorders/hw49129.asp As far as RLS-- yes, anyone can develop RLS. There are many meds that can be used to treat it. Klonopine, Sinemet, Mirapex, Requip and others. All of these drugs were originally set up to treat Parkinsons--as they replace the dopamine that the body can't produce, which in turn stops the tremors-- of RLS and the other types of leg and body tremors. (There are many kinds, and just because you have RLS doesn't mean you can't have more than one of the tremor problems.) Cpap's will help, if the problem is that your airway is being blocked by any means. Some will need Bipap-- but that would show up in a sleep study where they can actually put a mask on you for several hours. (It took 3 studies for me also, to get the right pressures, masks, etc.). I also have the PLMS and RLS, along with teeth grinding, muscle spasms so severe that my body contorts, all of which wake me hundreds of times thru the night. So yeah, the CPAP has been a blessing--but I also need the Sinemet, the Neurontin, the Flexeril for muscle spasms, the Motrin 800mg for inflammation, the Folic Acid and Vit B's for the countereffect that all those meds rob the B's from my body, and that's only part of what I take daily. Read up on RLS, PLMS, sleep disorders and see what fits you. We don't all have exactly the same combinations-- if we did- they'd be able to find the answer to our disease. Hugs, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2006 Report Share Posted January 20, 2006 Darlene, if you sleep during the day or fall asleep at stop signs or traffic lights or even sleepy behind the wheel of a vehicle you need the mask. You should see a different doctor. Sharon Darlene wrote: I have RLS as well as Sleep Apnea and my son also has both.....but hisSleep Apnea is so bad that he does have to sleep with the mask on.....Idon't. He does not have Sarc, either, but it is so hard to determinewhat all the symptoms of Sarc are because of the many different ways itattacks our bodies....that is why it is so difficult to explain to peoplehow sick you are.........Hugs,DarleneNS Co-Owner/Moderator> >>>> As well as being diagnosed with RLS, has any one been diagnosed with>> Sleep>> Apnea?>>>> Sleep Apnea and Sarcoidosis seem to go hand in hand since it has to do>> with>> sleeping and not getting enough oxygen when we sleep. Sharon L. Schuckman sharupac@... http://www.mannapages.com/sharonlynn Yahoo! Photos Got holiday prints? See all the ways to get quality prints in your hands ASAP. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2006 Report Share Posted January 20, 2006 Sharon, You have me mixed up with someone else, apparently.....I do NOT fall asleep during the day unless I have worked too hard or something like that and I have NEVER fell asleep at stop signs or traffic lights or behind the wheel of a car...........I don't know where you got that idea.... Darlene NS Co-Owner/Moderator > Darlene, if you sleep during the day or fall asleep at stop signs or > traffic lights or even sleepy behind the wheel of a vehicle you need the > mask. > > You should see a different doctor. > Sharon > > > Darlene darlene@...> wrote: > I have RLS as well as Sleep Apnea and my son also has both.....but his > Sleep Apnea is so bad that he does have to sleep with the mask on.....I > don't. He does not have Sarc, either, but it is so hard to determine > what all the symptoms of Sarc are because of the many different ways it > attacks our bodies....that is why it is so difficult to explain to people > how sick you are......... > Hugs, > Darlene > NS Co-Owner/Moderator > > > > > >> In a message dated 1/19/06 2:42:33 PM Pacific Standard Time, >> sharupac@... writes: >> >> >>> As well as being diagnosed with RLS, has any one been diagnosed with >>> Sleep >>> Apnea? >>> >>> Sleep Apnea and Sarcoidosis seem to go hand in hand since it has to do >>> with >>> sleeping and not getting enough oxygen when we sleep. > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > NS CHAT:- Has been cancelled for now. > > Message Archives:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2006 Report Share Posted January 20, 2006 These are things that can happen to you. I am on a CPAP forum and even if you have what some doctors call slight sleep apnea, we are finding out there is no such thing as slight sleep apnea. You either have sleep apnea or your don't. This is for anyone with sleep apnea. Sharon Darlene wrote: Sharon, You have me mixed up with someone else, apparently.....I do NOT fallasleep during the day unless I have worked too hard or something likethat and I have NEVER fell asleep at stop signs or traffic lights orbehind the wheel of a car...........I don't know where you got thatidea....DarleneNS Co-Owner/Moderator> Darlene, if you sleep during the day or fall asleep at stop signs or> traffic lights or even sleepy behind the wheel of a vehicle you need the> mask.>> You should see a different doctor.> Sharon>>> Darlene wrote:> I have RLS as well as Sleep Apnea and my son also has both.....but his> Sleep Apnea is so bad that he does have to sleep with the mask on.....I> don't. He does not have Sarc, either, but it is so hard to determine> what all the symptoms of Sarc are because of the many different ways it> attacks our bodies....that is why it is so difficult to explain to people> how sick you are.........> Hugs,> Darlene> NS Co-Owner/Moderator>>>>>>> In a message dated 1/19/06 2:42:33 PM Pacific Standard Time,>> sharupac@... writes:>>>>>>> As well as being diagnosed with RLS, has any one been diagnosed with>>> Sleep>>> Apnea?>>>>>> Sleep Apnea and Sarcoidosis seem to go hand in hand since it has to do>>> with>>> sleeping and not getting enough oxygen when we sleep.>>>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>> NS CHAT:- Has been cancelled for now.>> Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages>> Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2006 Report Share Posted January 21, 2006 Sharon, I understand what you are saying, but you DID address that email to me and you DID tell me I needed to get a different Doctor! I am sure you would feel the same as I do if the email was directed to you. I am not trying to start and argument, but I AM Co-Owner of this group and I don't want the members to think I am stupid enough to be driving around if I am falling asleep at the wheel! That is why I was upset about your email being directed to me.........I am looking out for the best for our group and always will be. I do not have a medical background, so I am not able to answer all their questions, but I do try to do my best directing them in the right direction......that is all I can do. Darlene NS Co-Owner/Moderator > > I have RLS as well as Sleep Apnea and my son also has both.....but his > > Sleep Apnea is so bad that he does have to sleep with the mask on.....I > > don't. He does not have Sarc, either, but it is so hard to determine > > what all the symptoms of Sarc are because of the many different ways it > > attacks our bodies....that is why it is so difficult to explain to people > > how sick you are......... > > Hugs, > > Darlene > > NS Co-Owner/Moderator > > > > > > > > > > > >> In a message dated 1/19/06 2:42:33 PM Pacific Standard Time, > >> sharupac@y... writes: > >> > >> > >>> As well as being diagnosed with RLS, has any one been diagnosed with > >>> Sleep > >>> Apnea? > >>> > >>> Sleep Apnea and Sarcoidosis seem to go hand in hand since it has to do > >>> with > >>> sleeping and not getting enough oxygen when we sleep. > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > The Neurosarcoidosis Community > > > > NS CHAT:- Has been cancelled for now. > > > > Message Archives:- > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > Members Database:- > > Listings of locations, phone numbers, and instant messengers. > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2006 Report Share Posted January 21, 2006 Darlene, I didn't mean to upset you, but I want you to question your doctor on the sleep apnea issue. You see, Tom has been on the machine for at least 5 years and when he read my reports from my doctor in Ohio he questioned me as to why I was not on the machine. Remember, I was being treated for Narcolepsy, and my results were sleep apnea. I just want you to question your doctor, that is all. Please forgive me if I upset you. Sharon Darlene wrote: Sharon, I understand what you are saying, but you DID address that email to me and you DID tell me I needed to get a different Doctor! I am sure you would feel the same as I do if the email was directed to you. I am not trying to start and argument, but I AM Co-Owner of this group and I don't want the members to think I am stupid enough to be driving around if I am falling asleep at the wheel! That is why I was upset about your email being directed to me.........I am looking out for the best for our group and always will be. I do not have a medical background, so I am not able to answer all their questions, but I do try to do my best directing them in the right direction......that is all I can do.DarleneNS Co-Owner/Moderator> > I have RLS as well as Sleep Apnea and my son also has both.....but his> > Sleep Apnea is so bad that he does have to sleep with the mask on.....I> > don't. He does not have Sarc, either, but it is so hard to determine> > what all the symptoms of Sarc are because of the many different ways it> > attacks our bodies....that is why it is so difficult to explain to people> > how sick you are.........> > Hugs,> > Darlene> > NS Co-Owner/Moderator> >> >> >> >> >> >> In a message dated 1/19/06 2:42:33 PM Pacific Standard Time,> >> sharupac@y... writes:> >>> >>> >>> As well as being diagnosed with RLS, has any one been diagnosed with> >>> Sleep> >>> Apnea?> >>>> >>> Sleep Apnea and Sarcoidosis seem to go hand in hand since it has to do> >>> with> >>> sleeping and not getting enough oxygen when we sleep.> >> >> >> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > The Neurosarcoidosis Community> >> > NS CHAT:- Has been cancelled for now.> >> > Message Archives:-> > http://groups.yahoo.com/group/Neurosarcoidosis/messages> >> > Members Database:-> > Listings of locations, phone numbers, and instant messengers.> > http://groups.yahoo.com/group/Neurosarcoidosis/database> >> > Quote Link to comment Share on other sites More sharing options...
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