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We have a (temporary)diagnosis for Alexandra at last!
- Thread starter AlexsMom
- Start date
Hello everyone. There is something specific about what she has that does inhibit the body from clearing mucous from the chest-there is a reason, I just have to do a little more research and am learning more about it-Yes, we have a diagnosis, but the only way it can be labeled transient is if she grows out of it and it is not a lifelong immune disorder. The doctor is very strict w/my use of her nebs./said they can actually make this worse and I've been using 2 treatmnts.to clear her chest in the morning and he told me I must make them at least 6 hours apart. If she is still having labored breathing after the 1st one, then I must start her on Prednisolone and call him- His nurse said there is a special way "these children"? are handled and I must follow my "action plan" or he would discontinue her care! That conversation was yesterday when I was trying to get all this straight in my head and explain to her she can't cough this stuff out on her own- I don't know....I guess she'll be on prednisolone tomm-because every day is the same-do your children cough up mucous everyday even when they are not sick? Yes, we have a diagnosis, but "the plan" is scaring me. We are moving to a smaller home this week-end because of medical bills,prescriptions, etc. and only 1 income. When I know some more I will get the info.to you. As far as the GI aspect,her fecal fat from 1 stool sample came back negative-her stools are still greasy and foul, they are doing blood test for Celiac disease -I believe that can cause pancreatic problems? I don't know,this is alot.I know you deal w/it every day-This is also affecting me worse mentally I admitted to my husband tonite because 10 years ago I lost my brother at age 34 to AIDS. Alot of the things for Alexandra's treatmnt.are the same because it is an immune deficiency-but the difference is she is not supposed to succumb to the pnuemonias,etc.as AIDS patients do.- I'm just having serious flashbacks because of all the similarities. Kelly.
Hello everyone. There is something specific about what she has that does inhibit the body from clearing mucous from the chest-there is a reason, I just have to do a little more research and am learning more about it-Yes, we have a diagnosis, but the only way it can be labeled transient is if she grows out of it and it is not a lifelong immune disorder. The doctor is very strict w/my use of her nebs./said they can actually make this worse and I've been using 2 treatmnts.to clear her chest in the morning and he told me I must make them at least 6 hours apart. If she is still having labored breathing after the 1st one, then I must start her on Prednisolone and call him- His nurse said there is a special way "these children"? are handled and I must follow my "action plan" or he would discontinue her care! That conversation was yesterday when I was trying to get all this straight in my head and explain to her she can't cough this stuff out on her own- I don't know....I guess she'll be on prednisolone tomm-because every day is the same-do your children cough up mucous everyday even when they are not sick? Yes, we have a diagnosis, but "the plan" is scaring me. We are moving to a smaller home this week-end because of medical bills,prescriptions, etc. and only 1 income. When I know some more I will get the info.to you. As far as the GI aspect,her fecal fat from 1 stool sample came back negative-her stools are still greasy and foul, they are doing blood test for Celiac disease -I believe that can cause pancreatic problems? I don't know,this is alot.I know you deal w/it every day-This is also affecting me worse mentally I admitted to my husband tonite because 10 years ago I lost my brother at age 34 to AIDS. Alot of the things for Alexandra's treatmnt.are the same because it is an immune deficiency-but the difference is she is not supposed to succumb to the pnuemonias,etc.as AIDS patients do.- I'm just having serious flashbacks because of all the similarities. Kelly.
Hello everyone. There is something specific about what she has that does inhibit the body from clearing mucous from the chest-there is a reason, I just have to do a little more research and am learning more about it-Yes, we have a diagnosis, but the only way it can be labeled transient is if she grows out of it and it is not a lifelong immune disorder. The doctor is very strict w/my use of her nebs./said they can actually make this worse and I've been using 2 treatmnts.to clear her chest in the morning and he told me I must make them at least 6 hours apart. If she is still having labored breathing after the 1st one, then I must start her on Prednisolone and call him- His nurse said there is a special way "these children"? are handled and I must follow my "action plan" or he would discontinue her care! That conversation was yesterday when I was trying to get all this straight in my head and explain to her she can't cough this stuff out on her own- I don't know....I guess she'll be on prednisolone tomm-because every day is the same-do your children cough up mucous everyday even when they are not sick? Yes, we have a diagnosis, but "the plan" is scaring me. We are moving to a smaller home this week-end because of medical bills,prescriptions, etc. and only 1 income. When I know some more I will get the info.to you. As far as the GI aspect,her fecal fat from 1 stool sample came back negative-her stools are still greasy and foul, they are doing blood test for Celiac disease -I believe that can cause pancreatic problems? I don't know,this is alot.I know you deal w/it every day-This is also affecting me worse mentally I admitted to my husband tonite because 10 years ago I lost my brother at age 34 to AIDS. Alot of the things for Alexandra's treatmnt.are the same because it is an immune deficiency-but the difference is she is not supposed to succumb to the pnuemonias,etc.as AIDS patients do.- I'm just having serious flashbacks because of all the similarities. Kelly.
Hello everyone. There is something specific about what she has that does inhibit the body from clearing mucous from the chest-there is a reason, I just have to do a little more research and am learning more about it-Yes, we have a diagnosis, but the only way it can be labeled transient is if she grows out of it and it is not a lifelong immune disorder. The doctor is very strict w/my use of her nebs./said they can actually make this worse and I've been using 2 treatmnts.to clear her chest in the morning and he told me I must make them at least 6 hours apart. If she is still having labored breathing after the 1st one, then I must start her on Prednisolone and call him- His nurse said there is a special way "these children"? are handled and I must follow my "action plan" or he would discontinue her care! That conversation was yesterday when I was trying to get all this straight in my head and explain to her she can't cough this stuff out on her own- I don't know....I guess she'll be on prednisolone tomm-because every day is the same-do your children cough up mucous everyday even when they are not sick? Yes, we have a diagnosis, but "the plan" is scaring me. We are moving to a smaller home this week-end because of medical bills,prescriptions, etc. and only 1 income. When I know some more I will get the info.to you. As far as the GI aspect,her fecal fat from 1 stool sample came back negative-her stools are still greasy and foul, they are doing blood test for Celiac disease -I believe that can cause pancreatic problems? I don't know,this is alot.I know you deal w/it every day-This is also affecting me worse mentally I admitted to my husband tonite because 10 years ago I lost my brother at age 34 to AIDS. Alot of the things for Alexandra's treatmnt.are the same because it is an immune deficiency-but the difference is she is not supposed to succumb to the pnuemonias,etc.as AIDS patients do.- I'm just having serious flashbacks because of all the similarities. Kelly.
Hello everyone. There is something specific about what she has that does inhibit the body from clearing mucous from the chest-there is a reason, I just have to do a little more research and am learning more about it-Yes, we have a diagnosis, but the only way it can be labeled transient is if she grows out of it and it is not a lifelong immune disorder. The doctor is very strict w/my use of her nebs./said they can actually make this worse and I've been using 2 treatmnts.to clear her chest in the morning and he told me I must make them at least 6 hours apart. If she is still having labored breathing after the 1st one, then I must start her on Prednisolone and call him- His nurse said there is a special way "these children"? are handled and I must follow my "action plan" or he would discontinue her care! That conversation was yesterday when I was trying to get all this straight in my head and explain to her she can't cough this stuff out on her own- I don't know....I guess she'll be on prednisolone tomm-because every day is the same-do your children cough up mucous everyday even when they are not sick? Yes, we have a diagnosis, but "the plan" is scaring me. We are moving to a smaller home this week-end because of medical bills,prescriptions, etc. and only 1 income. When I know some more I will get the info.to you. As far as the GI aspect,her fecal fat from 1 stool sample came back negative-her stools are still greasy and foul, they are doing blood test for Celiac disease -I believe that can cause pancreatic problems? I don't know,this is alot.I know you deal w/it every day-This is also affecting me worse mentally I admitted to my husband tonite because 10 years ago I lost my brother at age 34 to AIDS. Alot of the things for Alexandra's treatmnt.are the same because it is an immune deficiency-but the difference is she is not supposed to succumb to the pnuemonias,etc.as AIDS patients do.- I'm just having serious flashbacks because of all the similarities. Kelly.
From what I understand Xopenex is stronger than Albuterol thus is taken every six hours instead of every four. I'm on Prednisone if thats the med she's on, and I take it for inflammation not sputum clearance. For that I take Mucinex, and Pulmozyme. CF makes the sputum (mucous) thick and sticky and these meds change its molecular cohesion so it can be coughed up. Prednisone has a whole lot of side effects and if they aren't struggling for air, I wouldn't use it. Weakened immune system (immune system will inflame the brochial airways to instigate a response and perhaps increase mucous amount, in CF that isn't a good as it might sound in a normal person since our mucous can't be just coughed up, so Prednisone will lower immune system to stifle this response) even brittle bones, insomnia, and many others which can be looked up at www.drugs.com or Medline.com. I'm 35 and have suffered with it since I was 3mts old. Its a progressive disease, so she won't be dying next month or next year. And with aggressive treatment you could even put it into a form of "remission". Only meaning that symptoms will be less noticable. But, always talk with your doctor about any ideas, or suggestions. Only you and they know whats best for your child.
James 35yr CF, CFRD
James 35yr CF, CFRD
From what I understand Xopenex is stronger than Albuterol thus is taken every six hours instead of every four. I'm on Prednisone if thats the med she's on, and I take it for inflammation not sputum clearance. For that I take Mucinex, and Pulmozyme. CF makes the sputum (mucous) thick and sticky and these meds change its molecular cohesion so it can be coughed up. Prednisone has a whole lot of side effects and if they aren't struggling for air, I wouldn't use it. Weakened immune system (immune system will inflame the brochial airways to instigate a response and perhaps increase mucous amount, in CF that isn't a good as it might sound in a normal person since our mucous can't be just coughed up, so Prednisone will lower immune system to stifle this response) even brittle bones, insomnia, and many others which can be looked up at www.drugs.com or Medline.com. I'm 35 and have suffered with it since I was 3mts old. Its a progressive disease, so she won't be dying next month or next year. And with aggressive treatment you could even put it into a form of "remission". Only meaning that symptoms will be less noticable. But, always talk with your doctor about any ideas, or suggestions. Only you and they know whats best for your child.
James 35yr CF, CFRD
James 35yr CF, CFRD
From what I understand Xopenex is stronger than Albuterol thus is taken every six hours instead of every four. I'm on Prednisone if thats the med she's on, and I take it for inflammation not sputum clearance. For that I take Mucinex, and Pulmozyme. CF makes the sputum (mucous) thick and sticky and these meds change its molecular cohesion so it can be coughed up. Prednisone has a whole lot of side effects and if they aren't struggling for air, I wouldn't use it. Weakened immune system (immune system will inflame the brochial airways to instigate a response and perhaps increase mucous amount, in CF that isn't a good as it might sound in a normal person since our mucous can't be just coughed up, so Prednisone will lower immune system to stifle this response) even brittle bones, insomnia, and many others which can be looked up at www.drugs.com or Medline.com. I'm 35 and have suffered with it since I was 3mts old. Its a progressive disease, so she won't be dying next month or next year. And with aggressive treatment you could even put it into a form of "remission". Only meaning that symptoms will be less noticable. But, always talk with your doctor about any ideas, or suggestions. Only you and they know whats best for your child.
James 35yr CF, CFRD
James 35yr CF, CFRD
From what I understand Xopenex is stronger than Albuterol thus is taken every six hours instead of every four. I'm on Prednisone if thats the med she's on, and I take it for inflammation not sputum clearance. For that I take Mucinex, and Pulmozyme. CF makes the sputum (mucous) thick and sticky and these meds change its molecular cohesion so it can be coughed up. Prednisone has a whole lot of side effects and if they aren't struggling for air, I wouldn't use it. Weakened immune system (immune system will inflame the brochial airways to instigate a response and perhaps increase mucous amount, in CF that isn't a good as it might sound in a normal person since our mucous can't be just coughed up, so Prednisone will lower immune system to stifle this response) even brittle bones, insomnia, and many others which can be looked up at www.drugs.com or Medline.com. I'm 35 and have suffered with it since I was 3mts old. Its a progressive disease, so she won't be dying next month or next year. And with aggressive treatment you could even put it into a form of "remission". Only meaning that symptoms will be less noticable. But, always talk with your doctor about any ideas, or suggestions. Only you and they know whats best for your child.
James 35yr CF, CFRD
James 35yr CF, CFRD
From what I understand Xopenex is stronger than Albuterol thus is taken every six hours instead of every four. I'm on Prednisone if thats the med she's on, and I take it for inflammation not sputum clearance. For that I take Mucinex, and Pulmozyme. CF makes the sputum (mucous) thick and sticky and these meds change its molecular cohesion so it can be coughed up. Prednisone has a whole lot of side effects and if they aren't struggling for air, I wouldn't use it. Weakened immune system (immune system will inflame the brochial airways to instigate a response and perhaps increase mucous amount, in CF that isn't a good as it might sound in a normal person since our mucous can't be just coughed up, so Prednisone will lower immune system to stifle this response) even brittle bones, insomnia, and many others which can be looked up at www.drugs.com or Medline.com. I'm 35 and have suffered with it since I was 3mts old. Its a progressive disease, so she won't be dying next month or next year. And with aggressive treatment you could even put it into a form of "remission". Only meaning that symptoms will be less noticable. But, always talk with your doctor about any ideas, or suggestions. Only you and they know whats best for your child.
James 35yr CF, CFRD
James 35yr CF, CFRD