Guest guest Posted October 31, 2002 Report Share Posted October 31, 2002 , Thanks for the info on G tubes and what to expect. Abby does not have one, but she has serious reflux. She is on prevacid, zantac and reglan. Based on posting to this site, we also asked our doctor to try switching from creon to pancrecarb (spelling?). He agreed and gave us samples. So far, Abby still refluxes several times an hour. I am not sure how long it will take to see if the new enzyme will help. We have not done any upside-down therapy for about a month. Abby's CF doctor is concerned that she may asperate some of her stomach fluids into her lungs. Abby coughes throughout the day. Her doctor believes that this is do to the reflux also. Abby had the upper lobe of her right lung removed in June. It was too severely damaged and would only have a been a source for infections. It was probably damaged from the reflux. Abby is working with a GI doctor at the CF clinic. All of the doctors there are impressive. They remember the details of Abby's case and always discuss Abby's visits with each other. Abby is only 10 months old. She also has issues with swallowing. Her formual must be thickened or some of it enters her lungs. The doctors are hoping that Abby will outgrow both the reflux and swallow issues. As her asophagas gets longer, the reflux may go away. The reflux may be causing the swallow issue. We have to wait and see. Here's my questions: 1. Do you know of anything we should consider trying? 2. Does reflux improve when they start eating solid foods? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2002 Report Share Posted November 2, 2002 Sorry I didn't respond sooner. I don't always have a chance to check my mail every day. Anyway, I am not sure how much help I will be with your questions. Emma also has swallowing issues but as of yet has not had any lung issues associated with her feeding issues. We actually thin her food down because if it's too thick, she gags and pukes up the entire contents of her stomach. Emma is on pureed solid foods because of this gagging issue. She tends to not chew her food properly and then when she swallows, she gags because it gets caught in her throat. For Emma, her reflux has not improved when she started eating solid foods, it's actually gotten worse but again that's because of the fact that food is thicker and she gagged on it. I am not sure that Emma's reflux has been typical of what usually happens. She started out by slowly decreasing what she ate and eventually over time, she totally stopped eating or drinking. At that time, she was not vomiting at all but was determined via tests to have silent reflux. Eventually, she was hospitalized and finally given some meds that helped (we switched CF care centers because of the ineffectiveness of her original doctors in diagnosing and treating her acid reflux and at her first visit to CHOP, they hospitalized her that day). It was only after she started eating again that she actually began to vomit. My point being that since her reflux has been a little different than most cases, I am not sure she is the best example of what typically happens. I also think as is the case with most things associated with CF, every case is different and hard to predict. Emma is also only a little over two and her esphogaus may yet not have gotten long enough yet. I am crossing my fingers that this is the case and that she grows out of it (and Abby too). - mom to Emma 2 years w/cf and Isabelle 4 years wo/cf > We have not done any upside-down therapy for about a month. Abby's > CF doctor is concerned that she may asperate some of her stomach > fluids into her lungs. Abby coughes throughout the day. Her doctor > > believes that this is do to the reflux also. Abby had the upper > lobe > of her right lung removed in June. It was too severely damaged and > would only have a been a source for infections. It was probably > damaged from the reflux. Abby is working with a GI doctor at the CF > > clinic. All of the doctors there are impressive. They remember the > > details of Abby's case and always discuss Abby's visits with each > other. > > Abby is only 10 months old. She also has issues with swallowing. > Her formual must be thickened or some of it enters her lungs. > The doctors are hoping that Abby will outgrow both the reflux and > swallow issues. As her asophagas gets longer, the reflux may go > away. The reflux may be causing the swallow issue. We have to wait > > and see. > > Here's my questions: > 1. Do you know of anything we should consider trying? > 2. Does reflux improve when they start eating solid foods? > ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2002 Report Share Posted November 2, 2002 Sorry I didn't respond sooner. I don't always have a chance to check my mail every day. Anyway, I am not sure how much help I will be with your questions. Emma also has swallowing issues but as of yet has not had any lung issues associated with her feeding issues. We actually thin her food down because if it's too thick, she gags and pukes up the entire contents of her stomach. Emma is on pureed solid foods because of this gagging issue. She tends to not chew her food properly and then when she swallows, she gags because it gets caught in her throat. For Emma, her reflux has not improved when she started eating solid foods, it's actually gotten worse but again that's because of the fact that food is thicker and she gagged on it. I am not sure that Emma's reflux has been typical of what usually happens. She started out by slowly decreasing what she ate and eventually over time, she totally stopped eating or drinking. At that time, she was not vomiting at all but was determined via tests to have silent reflux. Eventually, she was hospitalized and finally given some meds that helped (we switched CF care centers because of the ineffectiveness of her original doctors in diagnosing and treating her acid reflux and at her first visit to CHOP, they hospitalized her that day). It was only after she started eating again that she actually began to vomit. My point being that since her reflux has been a little different than most cases, I am not sure she is the best example of what typically happens. I also think as is the case with most things associated with CF, every case is different and hard to predict. Emma is also only a little over two and her esphogaus may yet not have gotten long enough yet. I am crossing my fingers that this is the case and that she grows out of it (and Abby too). - mom to Emma 2 years w/cf and Isabelle 4 years wo/cf > We have not done any upside-down therapy for about a month. Abby's > CF doctor is concerned that she may asperate some of her stomach > fluids into her lungs. Abby coughes throughout the day. Her doctor > > believes that this is do to the reflux also. Abby had the upper > lobe > of her right lung removed in June. It was too severely damaged and > would only have a been a source for infections. It was probably > damaged from the reflux. Abby is working with a GI doctor at the CF > > clinic. All of the doctors there are impressive. They remember the > > details of Abby's case and always discuss Abby's visits with each > other. > > Abby is only 10 months old. She also has issues with swallowing. > Her formual must be thickened or some of it enters her lungs. > The doctors are hoping that Abby will outgrow both the reflux and > swallow issues. As her asophagas gets longer, the reflux may go > away. The reflux may be causing the swallow issue. We have to wait > > and see. > > Here's my questions: > 1. Do you know of anything we should consider trying? > 2. Does reflux improve when they start eating solid foods? > ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2002 Report Share Posted November 2, 2002 Sorry I didn't respond sooner. I don't always have a chance to check my mail every day. Anyway, I am not sure how much help I will be with your questions. Emma also has swallowing issues but as of yet has not had any lung issues associated with her feeding issues. We actually thin her food down because if it's too thick, she gags and pukes up the entire contents of her stomach. Emma is on pureed solid foods because of this gagging issue. She tends to not chew her food properly and then when she swallows, she gags because it gets caught in her throat. For Emma, her reflux has not improved when she started eating solid foods, it's actually gotten worse but again that's because of the fact that food is thicker and she gagged on it. I am not sure that Emma's reflux has been typical of what usually happens. She started out by slowly decreasing what she ate and eventually over time, she totally stopped eating or drinking. At that time, she was not vomiting at all but was determined via tests to have silent reflux. Eventually, she was hospitalized and finally given some meds that helped (we switched CF care centers because of the ineffectiveness of her original doctors in diagnosing and treating her acid reflux and at her first visit to CHOP, they hospitalized her that day). It was only after she started eating again that she actually began to vomit. My point being that since her reflux has been a little different than most cases, I am not sure she is the best example of what typically happens. I also think as is the case with most things associated with CF, every case is different and hard to predict. Emma is also only a little over two and her esphogaus may yet not have gotten long enough yet. I am crossing my fingers that this is the case and that she grows out of it (and Abby too). - mom to Emma 2 years w/cf and Isabelle 4 years wo/cf > We have not done any upside-down therapy for about a month. Abby's > CF doctor is concerned that she may asperate some of her stomach > fluids into her lungs. Abby coughes throughout the day. Her doctor > > believes that this is do to the reflux also. Abby had the upper > lobe > of her right lung removed in June. It was too severely damaged and > would only have a been a source for infections. It was probably > damaged from the reflux. Abby is working with a GI doctor at the CF > > clinic. All of the doctors there are impressive. They remember the > > details of Abby's case and always discuss Abby's visits with each > other. > > Abby is only 10 months old. She also has issues with swallowing. > Her formual must be thickened or some of it enters her lungs. > The doctors are hoping that Abby will outgrow both the reflux and > swallow issues. As her asophagas gets longer, the reflux may go > away. The reflux may be causing the swallow issue. We have to wait > > and see. > > Here's my questions: > 1. Do you know of anything we should consider trying? > 2. Does reflux improve when they start eating solid foods? > ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
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