Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 Hi My daughter doesn't have the same problem. However maybe I have a suggestion. The ENT suggested that we get a RinoFlow machine. It clears out the nasa/sinus cavities... which might mean less drainage into her throat/mouth? We have only used it when Karlee has had a lot of nasal congestion due to a cold. It is amazing what drains out of her nose. It really opens things up. We have only had it a year. It would have been helpful when she was little. from IL (Karlee 16 years) Help w/ oral care >Last year our daughter had to get a feeding tube due to poor food >intake. At that time she was eating pureed food orally. As time >has progressed she slowly began to refuse to eat orally and has >become completely tube feed with only small amounts taken orally. >(just teaspoons a day now) Since she is refusing to eat or swallow >her mouth has become very dry and at times dirty. Her mouth will >get very " gunky " . It is hard to descibe, it is almost like a thick >mucus that lines the back of her throat and palate. We have to >clean it out with a soft cloth 2-3 times a day. our Doctor has told >us to use a nasal saline spray to break up the " gunk " . Does anyone >have any other ideas or similar problems like this. The ENT thinks >the " gunk " is a result from refusing to swallow and clear her >throat. I feel that may be the main reason she is not eating oarlly >is due to the fact her throat and mouth is so dry and dirty. > > > > >Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. >For information about the CHARGE Syndrome >Foundation or to become a member (and get the newsletter) >please contact marion@... or visit >the CHARGE Syndrome Foundation web page >at http://www.chargesyndrome.org >7th International >CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website >www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 Hi My daughter doesn't have the same problem. However maybe I have a suggestion. The ENT suggested that we get a RinoFlow machine. It clears out the nasa/sinus cavities... which might mean less drainage into her throat/mouth? We have only used it when Karlee has had a lot of nasal congestion due to a cold. It is amazing what drains out of her nose. It really opens things up. We have only had it a year. It would have been helpful when she was little. from IL (Karlee 16 years) Help w/ oral care >Last year our daughter had to get a feeding tube due to poor food >intake. At that time she was eating pureed food orally. As time >has progressed she slowly began to refuse to eat orally and has >become completely tube feed with only small amounts taken orally. >(just teaspoons a day now) Since she is refusing to eat or swallow >her mouth has become very dry and at times dirty. Her mouth will >get very " gunky " . It is hard to descibe, it is almost like a thick >mucus that lines the back of her throat and palate. We have to >clean it out with a soft cloth 2-3 times a day. our Doctor has told >us to use a nasal saline spray to break up the " gunk " . Does anyone >have any other ideas or similar problems like this. The ENT thinks >the " gunk " is a result from refusing to swallow and clear her >throat. I feel that may be the main reason she is not eating oarlly >is due to the fact her throat and mouth is so dry and dirty. > > > > >Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. >For information about the CHARGE Syndrome >Foundation or to become a member (and get the newsletter) >please contact marion@... or visit >the CHARGE Syndrome Foundation web page >at http://www.chargesyndrome.org >7th International >CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website >www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 Hi My daughter doesn't have the same problem. However maybe I have a suggestion. The ENT suggested that we get a RinoFlow machine. It clears out the nasa/sinus cavities... which might mean less drainage into her throat/mouth? We have only used it when Karlee has had a lot of nasal congestion due to a cold. It is amazing what drains out of her nose. It really opens things up. We have only had it a year. It would have been helpful when she was little. from IL (Karlee 16 years) Help w/ oral care >Last year our daughter had to get a feeding tube due to poor food >intake. At that time she was eating pureed food orally. As time >has progressed she slowly began to refuse to eat orally and has >become completely tube feed with only small amounts taken orally. >(just teaspoons a day now) Since she is refusing to eat or swallow >her mouth has become very dry and at times dirty. Her mouth will >get very " gunky " . It is hard to descibe, it is almost like a thick >mucus that lines the back of her throat and palate. We have to >clean it out with a soft cloth 2-3 times a day. our Doctor has told >us to use a nasal saline spray to break up the " gunk " . Does anyone >have any other ideas or similar problems like this. The ENT thinks >the " gunk " is a result from refusing to swallow and clear her >throat. I feel that may be the main reason she is not eating oarlly >is due to the fact her throat and mouth is so dry and dirty. > > > > >Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. >For information about the CHARGE Syndrome >Foundation or to become a member (and get the newsletter) >please contact marion@... or visit >the CHARGE Syndrome Foundation web page >at http://www.chargesyndrome.org >7th International >CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website >www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 How does the Rino Flow machine work? Does she cooperate with it? Dylan's nose never runs, so he is almost always a little stuffy, then if he gets a cold it just pools in the back of his throat. Kim L > Hi > > My daughter doesn't have the same problem. However maybe I have a > suggestion. > > The ENT suggested that we get a RinoFlow machine. It clears out the > nasa/sinus cavities... which might mean less drainage into her throat/mouth? > > We have only used it when Karlee has had a lot of nasal congestion due to a > cold. It is amazing what drains out of her nose. It really opens things > up. We have only had it a year. It would have been helpful when she was > little. > > from IL (Karlee 16 years) > > > Help w/ oral care > > >> Last year our daughter had to get a feeding tube due to poor food >> intake. At that time she was eating pureed food orally. As time >> has progressed she slowly began to refuse to eat orally and has >> become completely tube feed with only small amounts taken orally. >> (just teaspoons a day now) Since she is refusing to eat or swallow >> her mouth has become very dry and at times dirty. Her mouth will >> get very " gunky " . It is hard to descibe, it is almost like a thick >> mucus that lines the back of her throat and palate. We have to >> clean it out with a soft cloth 2-3 times a day. our Doctor has told >> us to use a nasal saline spray to break up the " gunk " . Does anyone >> have any other ideas or similar problems like this. The ENT thinks >> the " gunk " is a result from refusing to swallow and clear her >> throat. I feel that may be the main reason she is not eating oarlly >> is due to the fact her throat and mouth is so dry and dirty. >> >> >> >> >> Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. >> For information about the CHARGE Syndrome >> Foundation or to become a member (and get the newsletter) >> please contact marion@... or visit >> the CHARGE Syndrome Foundation web page >> at http://www.chargesyndrome.org >> 7th International >> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website >> www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 How does the Rino Flow machine work? Does she cooperate with it? Dylan's nose never runs, so he is almost always a little stuffy, then if he gets a cold it just pools in the back of his throat. Kim L > Hi > > My daughter doesn't have the same problem. However maybe I have a > suggestion. > > The ENT suggested that we get a RinoFlow machine. It clears out the > nasa/sinus cavities... which might mean less drainage into her throat/mouth? > > We have only used it when Karlee has had a lot of nasal congestion due to a > cold. It is amazing what drains out of her nose. It really opens things > up. We have only had it a year. It would have been helpful when she was > little. > > from IL (Karlee 16 years) > > > Help w/ oral care > > >> Last year our daughter had to get a feeding tube due to poor food >> intake. At that time she was eating pureed food orally. As time >> has progressed she slowly began to refuse to eat orally and has >> become completely tube feed with only small amounts taken orally. >> (just teaspoons a day now) Since she is refusing to eat or swallow >> her mouth has become very dry and at times dirty. Her mouth will >> get very " gunky " . It is hard to descibe, it is almost like a thick >> mucus that lines the back of her throat and palate. We have to >> clean it out with a soft cloth 2-3 times a day. our Doctor has told >> us to use a nasal saline spray to break up the " gunk " . Does anyone >> have any other ideas or similar problems like this. The ENT thinks >> the " gunk " is a result from refusing to swallow and clear her >> throat. I feel that may be the main reason she is not eating oarlly >> is due to the fact her throat and mouth is so dry and dirty. >> >> >> >> >> Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. >> For information about the CHARGE Syndrome >> Foundation or to become a member (and get the newsletter) >> please contact marion@... or visit >> the CHARGE Syndrome Foundation web page >> at http://www.chargesyndrome.org >> 7th International >> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website >> www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 How does the Rino Flow machine work? Does she cooperate with it? Dylan's nose never runs, so he is almost always a little stuffy, then if he gets a cold it just pools in the back of his throat. Kim L > Hi > > My daughter doesn't have the same problem. However maybe I have a > suggestion. > > The ENT suggested that we get a RinoFlow machine. It clears out the > nasa/sinus cavities... which might mean less drainage into her throat/mouth? > > We have only used it when Karlee has had a lot of nasal congestion due to a > cold. It is amazing what drains out of her nose. It really opens things > up. We have only had it a year. It would have been helpful when she was > little. > > from IL (Karlee 16 years) > > > Help w/ oral care > > >> Last year our daughter had to get a feeding tube due to poor food >> intake. At that time she was eating pureed food orally. As time >> has progressed she slowly began to refuse to eat orally and has >> become completely tube feed with only small amounts taken orally. >> (just teaspoons a day now) Since she is refusing to eat or swallow >> her mouth has become very dry and at times dirty. Her mouth will >> get very " gunky " . It is hard to descibe, it is almost like a thick >> mucus that lines the back of her throat and palate. We have to >> clean it out with a soft cloth 2-3 times a day. our Doctor has told >> us to use a nasal saline spray to break up the " gunk " . Does anyone >> have any other ideas or similar problems like this. The ENT thinks >> the " gunk " is a result from refusing to swallow and clear her >> throat. I feel that may be the main reason she is not eating oarlly >> is due to the fact her throat and mouth is so dry and dirty. >> >> >> >> >> Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. >> For information about the CHARGE Syndrome >> Foundation or to become a member (and get the newsletter) >> please contact marion@... or visit >> the CHARGE Syndrome Foundation web page >> at http://www.chargesyndrome.org >> 7th International >> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website >> www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 We use " Nasal Rinse " by NeilMed. You have to have a pretty good ability to control water, etc going up your nose (so you don't aspirate, etc) but it clears Kennedy's nose out miraculously. We do it once a day, twice if she has a cold and the amount of 'gunk' coming out her nose as we use this amazes me. This may also be something to ask your doctor about to decrease build up.. Weir Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme. New Brunswick, Canada Weir homepage: http://ca.geocities.com/weirfamilyrogers CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca Help w/ oral care >Last year our daughter had to get a feeding tube due to poor food >intake. At that time she was eating pureed food orally. As time >has progressed she slowly began to refuse to eat orally and has >become completely tube feed with only small amounts taken orally. >(just teaspoons a day now) Since she is refusing to eat or swallow >her mouth has become very dry and at times dirty. Her mouth will >get very " gunky " . It is hard to descibe, it is almost like a thick >mucus that lines the back of her throat and palate. We have to >clean it out with a soft cloth 2-3 times a day. our Doctor has told >us to use a nasal saline spray to break up the " gunk " . Does anyone >have any other ideas or similar problems like this. The ENT thinks >the " gunk " is a result from refusing to swallow and clear her >throat. I feel that may be the main reason she is not eating oarlly >is due to the fact her throat and mouth is so dry and dirty. > > > > >Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. >For information about the CHARGE Syndrome >Foundation or to become a member (and get the newsletter) >please contact marion@... or visit >the CHARGE Syndrome Foundation web page >at http://www.chargesyndrome.org >7th International >CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website >www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 We use " Nasal Rinse " by NeilMed. You have to have a pretty good ability to control water, etc going up your nose (so you don't aspirate, etc) but it clears Kennedy's nose out miraculously. We do it once a day, twice if she has a cold and the amount of 'gunk' coming out her nose as we use this amazes me. This may also be something to ask your doctor about to decrease build up.. Weir Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme. New Brunswick, Canada Weir homepage: http://ca.geocities.com/weirfamilyrogers CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca Help w/ oral care >Last year our daughter had to get a feeding tube due to poor food >intake. At that time she was eating pureed food orally. As time >has progressed she slowly began to refuse to eat orally and has >become completely tube feed with only small amounts taken orally. >(just teaspoons a day now) Since she is refusing to eat or swallow >her mouth has become very dry and at times dirty. Her mouth will >get very " gunky " . It is hard to descibe, it is almost like a thick >mucus that lines the back of her throat and palate. We have to >clean it out with a soft cloth 2-3 times a day. our Doctor has told >us to use a nasal saline spray to break up the " gunk " . Does anyone >have any other ideas or similar problems like this. The ENT thinks >the " gunk " is a result from refusing to swallow and clear her >throat. I feel that may be the main reason she is not eating oarlly >is due to the fact her throat and mouth is so dry and dirty. > > > > >Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. >For information about the CHARGE Syndrome >Foundation or to become a member (and get the newsletter) >please contact marion@... or visit >the CHARGE Syndrome Foundation web page >at http://www.chargesyndrome.org >7th International >CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website >www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 We use " Nasal Rinse " by NeilMed. You have to have a pretty good ability to control water, etc going up your nose (so you don't aspirate, etc) but it clears Kennedy's nose out miraculously. We do it once a day, twice if she has a cold and the amount of 'gunk' coming out her nose as we use this amazes me. This may also be something to ask your doctor about to decrease build up.. Weir Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme. New Brunswick, Canada Weir homepage: http://ca.geocities.com/weirfamilyrogers CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca Help w/ oral care >Last year our daughter had to get a feeding tube due to poor food >intake. At that time she was eating pureed food orally. As time >has progressed she slowly began to refuse to eat orally and has >become completely tube feed with only small amounts taken orally. >(just teaspoons a day now) Since she is refusing to eat or swallow >her mouth has become very dry and at times dirty. Her mouth will >get very " gunky " . It is hard to descibe, it is almost like a thick >mucus that lines the back of her throat and palate. We have to >clean it out with a soft cloth 2-3 times a day. our Doctor has told >us to use a nasal saline spray to break up the " gunk " . Does anyone >have any other ideas or similar problems like this. The ENT thinks >the " gunk " is a result from refusing to swallow and clear her >throat. I feel that may be the main reason she is not eating oarlly >is due to the fact her throat and mouth is so dry and dirty. > > > > >Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. >For information about the CHARGE Syndrome >Foundation or to become a member (and get the newsletter) >please contact marion@... or visit >the CHARGE Syndrome Foundation web page >at http://www.chargesyndrome.org >7th International >CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website >www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 Hello; I have had this problem whenever I have gone for a period of time without eating, I used to have a G - Tube for the first sixteen years of my life before I got rid of it. I have a couple questions: Can she swallow liquids? If she can swallow small amounts then get a smal cup with a liquid she enjoys and tell her whenever she gets that gunky feeling to take small sips and swish it around let it get absorbed, if she can swallow then tell to go ahead and swallow - if not then she can spit it out in the sink. But if the gunky feeling comes after she has drank juice then that's another problem that can be fixed very easily - no more juice it builds up the mucus in the mouth to a point of all mucus and no salvia. My second question is: Does she have a burning sensation, or a feeling like a ball of " yucky " stuff at the back of the throat? If so she might have oral thrush, which is what I have. Thrush can be treated, and she should be checked out for that in the endoscopy ward. Hope I've answered you questions. Sincerely yours; Krista Bach. brandyrob2003 wrote: Last year our daughter had to get a feeding tube due to poor food intake. At that time she was eating pureed food orally. As time has progressed she slowly began to refuse to eat orally and has become completely tube feed with only small amounts taken orally. (just teaspoons a day now) Since she is refusing to eat or swallow her mouth has become very dry and at times dirty. Her mouth will get very " gunky " . It is hard to descibe, it is almost like a thick mucus that lines the back of her throat and palate. We have to clean it out with a soft cloth 2-3 times a day. our Doctor has told us to use a nasal saline spray to break up the " gunk " . Does anyone have any other ideas or similar problems like this. The ENT thinks the " gunk " is a result from refusing to swallow and clear her throat. I feel that may be the main reason she is not eating oarlly is due to the fact her throat and mouth is so dry and dirty. Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 Hello; I have had this problem whenever I have gone for a period of time without eating, I used to have a G - Tube for the first sixteen years of my life before I got rid of it. I have a couple questions: Can she swallow liquids? If she can swallow small amounts then get a smal cup with a liquid she enjoys and tell her whenever she gets that gunky feeling to take small sips and swish it around let it get absorbed, if she can swallow then tell to go ahead and swallow - if not then she can spit it out in the sink. But if the gunky feeling comes after she has drank juice then that's another problem that can be fixed very easily - no more juice it builds up the mucus in the mouth to a point of all mucus and no salvia. My second question is: Does she have a burning sensation, or a feeling like a ball of " yucky " stuff at the back of the throat? If so she might have oral thrush, which is what I have. Thrush can be treated, and she should be checked out for that in the endoscopy ward. Hope I've answered you questions. Sincerely yours; Krista Bach. brandyrob2003 wrote: Last year our daughter had to get a feeding tube due to poor food intake. At that time she was eating pureed food orally. As time has progressed she slowly began to refuse to eat orally and has become completely tube feed with only small amounts taken orally. (just teaspoons a day now) Since she is refusing to eat or swallow her mouth has become very dry and at times dirty. Her mouth will get very " gunky " . It is hard to descibe, it is almost like a thick mucus that lines the back of her throat and palate. We have to clean it out with a soft cloth 2-3 times a day. our Doctor has told us to use a nasal saline spray to break up the " gunk " . Does anyone have any other ideas or similar problems like this. The ENT thinks the " gunk " is a result from refusing to swallow and clear her throat. I feel that may be the main reason she is not eating oarlly is due to the fact her throat and mouth is so dry and dirty. Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 Hello; I have had this problem whenever I have gone for a period of time without eating, I used to have a G - Tube for the first sixteen years of my life before I got rid of it. I have a couple questions: Can she swallow liquids? If she can swallow small amounts then get a smal cup with a liquid she enjoys and tell her whenever she gets that gunky feeling to take small sips and swish it around let it get absorbed, if she can swallow then tell to go ahead and swallow - if not then she can spit it out in the sink. But if the gunky feeling comes after she has drank juice then that's another problem that can be fixed very easily - no more juice it builds up the mucus in the mouth to a point of all mucus and no salvia. My second question is: Does she have a burning sensation, or a feeling like a ball of " yucky " stuff at the back of the throat? If so she might have oral thrush, which is what I have. Thrush can be treated, and she should be checked out for that in the endoscopy ward. Hope I've answered you questions. Sincerely yours; Krista Bach. brandyrob2003 wrote: Last year our daughter had to get a feeding tube due to poor food intake. At that time she was eating pureed food orally. As time has progressed she slowly began to refuse to eat orally and has become completely tube feed with only small amounts taken orally. (just teaspoons a day now) Since she is refusing to eat or swallow her mouth has become very dry and at times dirty. Her mouth will get very " gunky " . It is hard to descibe, it is almost like a thick mucus that lines the back of her throat and palate. We have to clean it out with a soft cloth 2-3 times a day. our Doctor has told us to use a nasal saline spray to break up the " gunk " . Does anyone have any other ideas or similar problems like this. The ENT thinks the " gunk " is a result from refusing to swallow and clear her throat. I feel that may be the main reason she is not eating oarlly is due to the fact her throat and mouth is so dry and dirty. Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 hi, i had a similar thought to Krista, of 'could it be thrush?' ... even a test as tsimple as a swab of the mouth could be enough to check it out - if they hadn't already! i have heard of many babies refusing to feed when they have had thrush, it can be very sore. ds has it in his ears every now and then - it drives him crazy :0( good luck, Jo ----- Original Message ----- > > My second question is: Does she have a burning sensation, or a feeling like a ball of " yucky " stuff at the back of the throat? If so she might have oral thrush, which is what I have. Thrush can be treated, and she should be checked out for that in the endoscopy ward. > > Hope I've answered you questions. Sincerely yours; Krista Bach. > > brandyrob2003 wrote: > Last year our daughter had to get a feeding tube due to poor food > intake. At that time she was eating pureed food orally. As time > has progressed she slowly began to refuse to eat orally and has > become completely tube feed with only small amounts taken orally. > (just teaspoons a day now) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2004 Report Share Posted August 13, 2004 likes uses the pink toothettes, they are flavored sponges on a stick. You dip them in water and swab the gunk out of the mouth, we also use them for oral stimulation. , friend to , 23, CHARGE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2004 Report Share Posted August 13, 2004 likes uses the pink toothettes, they are flavored sponges on a stick. You dip them in water and swab the gunk out of the mouth, we also use them for oral stimulation. , friend to , 23, CHARGE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2004 Report Share Posted August 13, 2004 likes uses the pink toothettes, they are flavored sponges on a stick. You dip them in water and swab the gunk out of the mouth, we also use them for oral stimulation. , friend to , 23, CHARGE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2004 Report Share Posted August 13, 2004 When we use the Rinoflow we use a saline solution. I think it penentrates farther into the sinuses than what suctioning does. It does take a little cooperation. The end is held in the nostril. Then after a minute or so there is blowing through the nose involved. I think it does work amazingly well. from IL (Karlee 16 years) Help w/ oral care >> >> >>> Last year our daughter had to get a feeding tube due to poor food >>> intake. At that time she was eating pureed food orally. As time >>> has progressed she slowly began to refuse to eat orally and has >>> become completely tube feed with only small amounts taken orally. >>> (just teaspoons a day now) Since she is refusing to eat or swallow >>> her mouth has become very dry and at times dirty. Her mouth will >>> get very " gunky " . It is hard to descibe, it is almost like a thick >>> mucus that lines the back of her throat and palate. We have to >>> clean it out with a soft cloth 2-3 times a day. our Doctor has told >>> us to use a nasal saline spray to break up the " gunk " . Does anyone >>> have any other ideas or similar problems like this. The ENT thinks >>> the " gunk " is a result from refusing to swallow and clear her >>> throat. I feel that may be the main reason she is not eating oarlly >>> is due to the fact her throat and mouth is so dry and dirty. >>> >>> >>> >>> >>> Membership of this email support groups does not constitute membership in >> the CHARGE Syndrome Foundation. >>> For information about the CHARGE Syndrome >>> Foundation or to become a member (and get the newsletter) >>> please contact marion@... or visit >>> the CHARGE Syndrome Foundation web page >>> at http://www.chargesyndrome.org >>> 7th International >>> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. >> Information will be available at our website >>> www.chargesyndrome.org or by calling 1-. In Canada, you may >> contact CHARGE Syndrome Canada at 1- (families), visit >> www.chargesyndrome.ca, or email info@.... Thank you! >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2004 Report Share Posted August 13, 2004 When we use the Rinoflow we use a saline solution. I think it penentrates farther into the sinuses than what suctioning does. It does take a little cooperation. The end is held in the nostril. Then after a minute or so there is blowing through the nose involved. I think it does work amazingly well. from IL (Karlee 16 years) Help w/ oral care >> >> >>> Last year our daughter had to get a feeding tube due to poor food >>> intake. At that time she was eating pureed food orally. As time >>> has progressed she slowly began to refuse to eat orally and has >>> become completely tube feed with only small amounts taken orally. >>> (just teaspoons a day now) Since she is refusing to eat or swallow >>> her mouth has become very dry and at times dirty. Her mouth will >>> get very " gunky " . It is hard to descibe, it is almost like a thick >>> mucus that lines the back of her throat and palate. We have to >>> clean it out with a soft cloth 2-3 times a day. our Doctor has told >>> us to use a nasal saline spray to break up the " gunk " . Does anyone >>> have any other ideas or similar problems like this. The ENT thinks >>> the " gunk " is a result from refusing to swallow and clear her >>> throat. I feel that may be the main reason she is not eating oarlly >>> is due to the fact her throat and mouth is so dry and dirty. >>> >>> >>> >>> >>> Membership of this email support groups does not constitute membership in >> the CHARGE Syndrome Foundation. >>> For information about the CHARGE Syndrome >>> Foundation or to become a member (and get the newsletter) >>> please contact marion@... or visit >>> the CHARGE Syndrome Foundation web page >>> at http://www.chargesyndrome.org >>> 7th International >>> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. >> Information will be available at our website >>> www.chargesyndrome.org or by calling 1-. In Canada, you may >> contact CHARGE Syndrome Canada at 1- (families), visit >> www.chargesyndrome.ca, or email info@.... Thank you! >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2004 Report Share Posted August 13, 2004 When we use the Rinoflow we use a saline solution. I think it penentrates farther into the sinuses than what suctioning does. It does take a little cooperation. The end is held in the nostril. Then after a minute or so there is blowing through the nose involved. I think it does work amazingly well. from IL (Karlee 16 years) Help w/ oral care >> >> >>> Last year our daughter had to get a feeding tube due to poor food >>> intake. At that time she was eating pureed food orally. As time >>> has progressed she slowly began to refuse to eat orally and has >>> become completely tube feed with only small amounts taken orally. >>> (just teaspoons a day now) Since she is refusing to eat or swallow >>> her mouth has become very dry and at times dirty. Her mouth will >>> get very " gunky " . It is hard to descibe, it is almost like a thick >>> mucus that lines the back of her throat and palate. We have to >>> clean it out with a soft cloth 2-3 times a day. our Doctor has told >>> us to use a nasal saline spray to break up the " gunk " . Does anyone >>> have any other ideas or similar problems like this. The ENT thinks >>> the " gunk " is a result from refusing to swallow and clear her >>> throat. I feel that may be the main reason she is not eating oarlly >>> is due to the fact her throat and mouth is so dry and dirty. >>> >>> >>> >>> >>> Membership of this email support groups does not constitute membership in >> the CHARGE Syndrome Foundation. >>> For information about the CHARGE Syndrome >>> Foundation or to become a member (and get the newsletter) >>> please contact marion@... or visit >>> the CHARGE Syndrome Foundation web page >>> at http://www.chargesyndrome.org >>> 7th International >>> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. >> Information will be available at our website >>> www.chargesyndrome.org or by calling 1-. In Canada, you may >> contact CHARGE Syndrome Canada at 1- (families), visit >> www.chargesyndrome.ca, or email info@.... Thank you! >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2004 Report Share Posted August 15, 2004 Hi: Where did you purchase this machine? Approximately how much do they cost? Does your daughter have Choanal Atresia? I have been reading your E-mails and my daughter is 15 years old. Your e-mails have helped me. Thank you, On Thu, 12 Aug 2004 07:16:39 -0500 " Ludwig " wrote: > > > > >Hi > >My daughter doesn't have the same problem. & nbsp; However >maybe I have a >suggestion. > >The ENT suggested that we get a RinoFlow machine. & nbsp; >It clears out the >nasa/sinus cavities... which might mean less drainage >into her throat/mouth? > >We have only used it when Karlee has had a lot of nasal >congestion due to a >cold. & nbsp; It is amazing what drains out of her >nose. & nbsp; It really opens things >up. & nbsp; We have only had it a year. & nbsp; It would have >been helpful when she was >little. > > from IL (Karlee 16 years) > > > Help w/ oral care > > > & gt;Last year our daughter had to get a feeding tube due >to poor food > & gt;intake. & nbsp; At that time she was eating pureed food >orally. & nbsp; As time > & gt;has progressed she slowly began to refuse to eat >orally and has > & gt;become completely tube feed with only small amounts >taken orally. > & gt;(just teaspoons a day now) & nbsp; Since she is >refusing to eat or swallow > & gt;her mouth has become very dry and at times >dirty. & nbsp; Her mouth will > & gt;get very & quot;gunky & quot;. & nbsp; It is hard to >descibe, it is almost like a thick > & gt;mucus that lines the back of her throat and >palate. & nbsp; We have to > & gt;clean it out with a soft cloth 2-3 times a day. & nbsp; >our Doctor has told > & gt;us to use a nasal saline spray to break up the > & quot;gunk & quot;. & nbsp; Does anyone > & gt;have any other ideas or similar problems like >this. & nbsp; The ENT thinks > & gt;the & quot;gunk & quot; is a result from refusing to >swallow and clear her > & gt;throat. & nbsp; I feel that may be the main reason she >is not eating oarlly > & gt;is due to the fact her throat and mouth is so dry and >dirty. > & gt; > & gt; > & gt; > & gt; > & gt;Membership of this email support groups does not >constitute membership in >the CHARGE Syndrome Foundation. > & gt;For information about the CHARGE Syndrome > & gt;Foundation or to become a member (and get the >newsletter) > & gt;please contact marion@... or visit > & gt;the CHARGE Syndrome Foundation web page > & gt;at http://www.chargesyndrome.org > & gt;7th International > & gt;CHARGE Syndrome Conference, Miami Beach, Florida, >July 22-24, 2005. >Information will be available at our website > & gt;www.chargesyndrome.org or by calling >1-. & nbsp; In Canada, you may >contact CHARGE Syndrome Canada at 1- >(families), visit >www.chargesyndrome.ca, or email >info@.... & nbsp; Thank you! > & gt; > & gt; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2004 Report Share Posted August 15, 2004 Hi: Where did you purchase this machine? Approximately how much do they cost? Does your daughter have Choanal Atresia? I have been reading your E-mails and my daughter is 15 years old. Your e-mails have helped me. Thank you, On Thu, 12 Aug 2004 07:16:39 -0500 " Ludwig " wrote: > > > > >Hi > >My daughter doesn't have the same problem. & nbsp; However >maybe I have a >suggestion. > >The ENT suggested that we get a RinoFlow machine. & nbsp; >It clears out the >nasa/sinus cavities... which might mean less drainage >into her throat/mouth? > >We have only used it when Karlee has had a lot of nasal >congestion due to a >cold. & nbsp; It is amazing what drains out of her >nose. & nbsp; It really opens things >up. & nbsp; We have only had it a year. & nbsp; It would have >been helpful when she was >little. > > from IL (Karlee 16 years) > > > Help w/ oral care > > > & gt;Last year our daughter had to get a feeding tube due >to poor food > & gt;intake. & nbsp; At that time she was eating pureed food >orally. & nbsp; As time > & gt;has progressed she slowly began to refuse to eat >orally and has > & gt;become completely tube feed with only small amounts >taken orally. > & gt;(just teaspoons a day now) & nbsp; Since she is >refusing to eat or swallow > & gt;her mouth has become very dry and at times >dirty. & nbsp; Her mouth will > & gt;get very & quot;gunky & quot;. & nbsp; It is hard to >descibe, it is almost like a thick > & gt;mucus that lines the back of her throat and >palate. & nbsp; We have to > & gt;clean it out with a soft cloth 2-3 times a day. & nbsp; >our Doctor has told > & gt;us to use a nasal saline spray to break up the > & quot;gunk & quot;. & nbsp; Does anyone > & gt;have any other ideas or similar problems like >this. & nbsp; The ENT thinks > & gt;the & quot;gunk & quot; is a result from refusing to >swallow and clear her > & gt;throat. & nbsp; I feel that may be the main reason she >is not eating oarlly > & gt;is due to the fact her throat and mouth is so dry and >dirty. > & gt; > & gt; > & gt; > & gt; > & gt;Membership of this email support groups does not >constitute membership in >the CHARGE Syndrome Foundation. > & gt;For information about the CHARGE Syndrome > & gt;Foundation or to become a member (and get the >newsletter) > & gt;please contact marion@... or visit > & gt;the CHARGE Syndrome Foundation web page > & gt;at http://www.chargesyndrome.org > & gt;7th International > & gt;CHARGE Syndrome Conference, Miami Beach, Florida, >July 22-24, 2005. >Information will be available at our website > & gt;www.chargesyndrome.org or by calling >1-. & nbsp; In Canada, you may >contact CHARGE Syndrome Canada at 1- >(families), visit >www.chargesyndrome.ca, or email >info@.... & nbsp; Thank you! > & gt; > & gt; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2004 Report Share Posted August 15, 2004 Hi: Where did you purchase this machine? Approximately how much do they cost? Does your daughter have Choanal Atresia? I have been reading your E-mails and my daughter is 15 years old. Your e-mails have helped me. Thank you, On Thu, 12 Aug 2004 07:16:39 -0500 " Ludwig " wrote: > > > > >Hi > >My daughter doesn't have the same problem. & nbsp; However >maybe I have a >suggestion. > >The ENT suggested that we get a RinoFlow machine. & nbsp; >It clears out the >nasa/sinus cavities... which might mean less drainage >into her throat/mouth? > >We have only used it when Karlee has had a lot of nasal >congestion due to a >cold. & nbsp; It is amazing what drains out of her >nose. & nbsp; It really opens things >up. & nbsp; We have only had it a year. & nbsp; It would have >been helpful when she was >little. > > from IL (Karlee 16 years) > > > Help w/ oral care > > > & gt;Last year our daughter had to get a feeding tube due >to poor food > & gt;intake. & nbsp; At that time she was eating pureed food >orally. & nbsp; As time > & gt;has progressed she slowly began to refuse to eat >orally and has > & gt;become completely tube feed with only small amounts >taken orally. > & gt;(just teaspoons a day now) & nbsp; Since she is >refusing to eat or swallow > & gt;her mouth has become very dry and at times >dirty. & nbsp; Her mouth will > & gt;get very & quot;gunky & quot;. & nbsp; It is hard to >descibe, it is almost like a thick > & gt;mucus that lines the back of her throat and >palate. & nbsp; We have to > & gt;clean it out with a soft cloth 2-3 times a day. & nbsp; >our Doctor has told > & gt;us to use a nasal saline spray to break up the > & quot;gunk & quot;. & nbsp; Does anyone > & gt;have any other ideas or similar problems like >this. & nbsp; The ENT thinks > & gt;the & quot;gunk & quot; is a result from refusing to >swallow and clear her > & gt;throat. & nbsp; I feel that may be the main reason she >is not eating oarlly > & gt;is due to the fact her throat and mouth is so dry and >dirty. > & gt; > & gt; > & gt; > & gt; > & gt;Membership of this email support groups does not >constitute membership in >the CHARGE Syndrome Foundation. > & gt;For information about the CHARGE Syndrome > & gt;Foundation or to become a member (and get the >newsletter) > & gt;please contact marion@... or visit > & gt;the CHARGE Syndrome Foundation web page > & gt;at http://www.chargesyndrome.org > & gt;7th International > & gt;CHARGE Syndrome Conference, Miami Beach, Florida, >July 22-24, 2005. >Information will be available at our website > & gt;www.chargesyndrome.org or by calling >1-. & nbsp; In Canada, you may >contact CHARGE Syndrome Canada at 1- >(families), visit >www.chargesyndrome.ca, or email >info@.... & nbsp; Thank you! > & gt; > & gt; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 The rinoflow machine cost aprroxiamtely $150. I purchased it at a medical supply store. I had a Dr. prescription, but the insurance did not pay for it. My daughter did have choanal atresia, repaired at 6 weeks. Her nose ran constantly until she was three, then it quit. She has always had a lot of pooling of saliva-mucous in the back of her throat and has had to do a lot of clearing before she speaks. However, the has improved since she has had VitalStim therapy. We use the machine when she has head congestion from a cold. She has never been able to blow her nose very well. from IL (Karlee 16 years) Help w/ oral care >> >> >> & gt;Last year our daughter had to get a feeding tube due >>to poor food >> & gt;intake. & nbsp; At that time she was eating pureed food >>orally. & nbsp; As time >> & gt;has progressed she slowly began to refuse to eat >>orally and has >> & gt;become completely tube feed with only small amounts >>taken orally. >> & gt;(just teaspoons a day now) & nbsp; Since she is >>refusing to eat or swallow >> & gt;her mouth has become very dry and at times >>dirty. & nbsp; Her mouth will >> & gt;get very & quot;gunky & quot;. & nbsp; It is hard to >>descibe, it is almost like a thick >> & gt;mucus that lines the back of her throat and >>palate. & nbsp; We have to >> & gt;clean it out with a soft cloth 2-3 times a day. & nbsp; >>our Doctor has told >> & gt;us to use a nasal saline spray to break up the >> & quot;gunk & quot;. & nbsp; Does anyone >> & gt;have any other ideas or similar problems like >>this. & nbsp; The ENT thinks >> & gt;the & quot;gunk & quot; is a result from refusing to >>swallow and clear her >> & gt;throat. & nbsp; I feel that may be the main reason she >>is not eating oarlly >> & gt;is due to the fact her throat and mouth is so dry and >>dirty. >> & gt; >> & gt; >> & gt; >> & gt; >> & gt;Membership of this email support groups does not >>constitute membership in >>the CHARGE Syndrome Foundation. >> & gt;For information about the CHARGE Syndrome >> & gt;Foundation or to become a member (and get the >>newsletter) >> & gt;please contact marion@... or visit >> & gt;the CHARGE Syndrome Foundation web page >> & gt;at http://www.chargesyndrome.org >> & gt;7th International >> & gt;CHARGE Syndrome Conference, Miami Beach, Florida, >>July 22-24, 2005. >>Information will be available at our website >> & gt;www.chargesyndrome.org or by calling >>1-. & nbsp; In Canada, you may >>contact CHARGE Syndrome Canada at 1- >>(families), visit >>www.chargesyndrome.ca, or email >>info@.... & nbsp; Thank you! >> & gt; >> & gt; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 Hi , Early someone had asked about nasal congestion. Our ENT suggested a Rinoflow Machine. You use Saline Solution which is forced as a mist forced into the sinus cavities. The end is held in the nostril and after a minute or slow you blow your nose into the same device. Anyway, I have used it for Karlee when she was congested from a cold (she does not blow her nose well normally). However the mist really thins out (sort of dissolves the mucous) and it just sort of runs out. I went to your wonderful web site. I saw the great picture of Kennedy in her dance costume.. I was intrigued that she dances. Does she have balance problems? Karlee would like to be more involved in some dance activities (maybe lessons) but balance is a issue. However she can ride a bike, so maybe she would do ok....? Not sure " when " we would work such an activity into her schedule. I bookmarked your web site. I need to go back back and read some more when I can take my time. Thanks for sharing. from IL (Karlee 16 years) Help w/ oral care > >> > >> > >> & gt;Last year our daughter had to get a feeding tube due > >>to poor food > >> & gt;intake. & nbsp; At that time she was eating pureed food > >>orally. & nbsp; As time > >> & gt;has progressed she slowly began to refuse to eat > >>orally and has > >> & gt;become completely tube feed with only small amounts > >>taken orally. > >> & gt;(just teaspoons a day now) & nbsp; Since she is > >>refusing to eat or swallow > >> & gt;her mouth has become very dry and at times > >>dirty. & nbsp; Her mouth will > >> & gt;get very & quot;gunky & quot;. & nbsp; It is hard to > >>descibe, it is almost like a thick > >> & gt;mucus that lines the back of her throat and > >>palate. & nbsp; We have to > >> & gt;clean it out with a soft cloth 2-3 times a day. & nbsp; > >>our Doctor has told > >> & gt;us to use a nasal saline spray to break up the > >> & quot;gunk & quot;. & nbsp; Does anyone > >> & gt;have any other ideas or similar problems like > >>this. & nbsp; The ENT thinks > >> & gt;the & quot;gunk & quot; is a result from refusing to > >>swallow and clear her > >> & gt;throat. & nbsp; I feel that may be the main reason she > >>is not eating oarlly > >> & gt;is due to the fact her throat and mouth is so dry and > >>dirty. > >> & gt; > >> & gt; > >> & gt; > >> & gt; > >> & gt;Membership of this email support groups does not > >>constitute membership in > >>the CHARGE Syndrome Foundation. > >> & gt;For information about the CHARGE Syndrome > >> & gt;Foundation or to become a member (and get the > >>newsletter) > >> & gt;please contact marion@... or visit > >> & gt;the CHARGE Syndrome Foundation web page > >> & gt;at http://www.chargesyndrome.org > >> & gt;7th International > >> & gt;CHARGE Syndrome Conference, Miami Beach, Florida, > >>July 22-24, 2005. > >>Information will be available at our website > >> & gt;www.chargesyndrome.org or by calling > >>1-. & nbsp; In Canada, you may > >>contact CHARGE Syndrome Canada at 1- > >>(families), visit > >>www.chargesyndrome.ca, or email > >>info@.... & nbsp; Thank you! > >> & gt; > >> & gt; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 - Aubrie also dances. Balance is an issue for her in climbing, biking, etc, but she does well with dance. She doesn't perform the moves quite the same as everyone else-- she has her own style. But she knows the steps and keeps in time and makes the entire town proud when she dances. Michele W Aubrie's mom 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.