My daughter is almost 14 and last year we got a diagnosis of cf after a long 7 year search for an answer to her health issues, mostly weight and malabsorption issues. She had two positive sweat tests, 87 and 89, but the Ambry full panel only revealed one mutation. Curious. After a year of treatment at a CF center, they are now telling us that she may not have cf and she is being sent to a children's hospital in Cincinnati, OH for evaluation by their GI and nutrition department. She doesn't have any lung issues, doesn't even do breathing treatments and they took her off of the enzymes since she tested pancreatic sufficient and even trying them anyway yielded no help. She contiues to drop weight due to malabsorption, has large BMs with clearly undigested food in them, we have seen a GI who actually found the elevated sweat chloride and ruled out celiac, chron's. She is on a growth hormone because she does not produce enough on her own, but has barley grown. She is 50 inches tall and weighs 61 lbs. and will be 14 next month. I am so confused and I don't even know what kind of specialists to turn to. What do you do when nobody is able to tell you what is wrong with your child? Where do you go for answers when you feel like you have been everywhere? Is it possible that I may never know what is wrong with my daughter? Sorry to rattle on I am just feeling frustrated and defeated in my search for answers. After so many years we thought we had it figured out with the CF and to be told once againg that we don't know is hard to swallow. What would you do now?
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
opinions wanted
- Thread starter Samsmom
- Start date
My daughter is almost 14 and last year we got a diagnosis of cf after a long 7 year search for an answer to her health issues, mostly weight and malabsorption issues. She had two positive sweat tests, 87 and 89, but the Ambry full panel only revealed one mutation. Curious. After a year of treatment at a CF center, they are now telling us that she may not have cf and she is being sent to a children's hospital in Cincinnati, OH for evaluation by their GI and nutrition department. She doesn't have any lung issues, doesn't even do breathing treatments and they took her off of the enzymes since she tested pancreatic sufficient and even trying them anyway yielded no help. She contiues to drop weight due to malabsorption, has large BMs with clearly undigested food in them, we have seen a GI who actually found the elevated sweat chloride and ruled out celiac, chron's. She is on a growth hormone because she does not produce enough on her own, but has barley grown. She is 50 inches tall and weighs 61 lbs. and will be 14 next month. I am so confused and I don't even know what kind of specialists to turn to. What do you do when nobody is able to tell you what is wrong with your child? Where do you go for answers when you feel like you have been everywhere? Is it possible that I may never know what is wrong with my daughter? Sorry to rattle on I am just feeling frustrated and defeated in my search for answers. After so many years we thought we had it figured out with the CF and to be told once againg that we don't know is hard to swallow. What would you do now?
My daughter is almost 14 and last year we got a diagnosis of cf after a long 7 year search for an answer to her health issues, mostly weight and malabsorption issues. She had two positive sweat tests, 87 and 89, but the Ambry full panel only revealed one mutation. Curious. After a year of treatment at a CF center, they are now telling us that she may not have cf and she is being sent to a children's hospital in Cincinnati, OH for evaluation by their GI and nutrition department. She doesn't have any lung issues, doesn't even do breathing treatments and they took her off of the enzymes since she tested pancreatic sufficient and even trying them anyway yielded no help. She contiues to drop weight due to malabsorption, has large BMs with clearly undigested food in them, we have seen a GI who actually found the elevated sweat chloride and ruled out celiac, chron's. She is on a growth hormone because she does not produce enough on her own, but has barley grown. She is 50 inches tall and weighs 61 lbs. and will be 14 next month. I am so confused and I don't even know what kind of specialists to turn to. What do you do when nobody is able to tell you what is wrong with your child? Where do you go for answers when you feel like you have been everywhere? Is it possible that I may never know what is wrong with my daughter? Sorry to rattle on I am just feeling frustrated and defeated in my search for answers. After so many years we thought we had it figured out with the CF and to be told once againg that we don't know is hard to swallow. What would you do now?
My daughter is almost 14 and last year we got a diagnosis of cf after a long 7 year search for an answer to her health issues, mostly weight and malabsorption issues. She had two positive sweat tests, 87 and 89, but the Ambry full panel only revealed one mutation. Curious. After a year of treatment at a CF center, they are now telling us that she may not have cf and she is being sent to a children's hospital in Cincinnati, OH for evaluation by their GI and nutrition department. She doesn't have any lung issues, doesn't even do breathing treatments and they took her off of the enzymes since she tested pancreatic sufficient and even trying them anyway yielded no help. She contiues to drop weight due to malabsorption, has large BMs with clearly undigested food in them, we have seen a GI who actually found the elevated sweat chloride and ruled out celiac, chron's. She is on a growth hormone because she does not produce enough on her own, but has barley grown. She is 50 inches tall and weighs 61 lbs. and will be 14 next month. I am so confused and I don't even know what kind of specialists to turn to. What do you do when nobody is able to tell you what is wrong with your child? Where do you go for answers when you feel like you have been everywhere? Is it possible that I may never know what is wrong with my daughter? Sorry to rattle on I am just feeling frustrated and defeated in my search for answers. After so many years we thought we had it figured out with the CF and to be told once againg that we don't know is hard to swallow. What would you do now?
My daughter is almost 14 and last year we got a diagnosis of cf after a long 7 year search for an answer to her health issues, mostly weight and malabsorption issues. She had two positive sweat tests, 87 and 89, but the Ambry full panel only revealed one mutation. Curious. After a year of treatment at a CF center, they are now telling us that she may not have cf and she is being sent to a children's hospital in Cincinnati, OH for evaluation by their GI and nutrition department. She doesn't have any lung issues, doesn't even do breathing treatments and they took her off of the enzymes since she tested pancreatic sufficient and even trying them anyway yielded no help. She contiues to drop weight due to malabsorption, has large BMs with clearly undigested food in them, we have seen a GI who actually found the elevated sweat chloride and ruled out celiac, chron's. She is on a growth hormone because she does not produce enough on her own, but has barley grown. She is 50 inches tall and weighs 61 lbs. and will be 14 next month. I am so confused and I don't even know what kind of specialists to turn to. What do you do when nobody is able to tell you what is wrong with your child? Where do you go for answers when you feel like you have been everywhere? Is it possible that I may never know what is wrong with my daughter? Sorry to rattle on I am just feeling frustrated and defeated in my search for answers. After so many years we thought we had it figured out with the CF and to be told once againg that we don't know is hard to swallow. What would you do now?
My daughter is almost 14 and last year we got a diagnosis of cf after a long 7 year search for an answer to her health issues, mostly weight and malabsorption issues. She had two positive sweat tests, 87 and 89, but the Ambry full panel only revealed one mutation. Curious. After a year of treatment at a CF center, they are now telling us that she may not have cf and she is being sent to a children's hospital in Cincinnati, OH for evaluation by their GI and nutrition department. She doesn't have any lung issues, doesn't even do breathing treatments and they took her off of the enzymes since she tested pancreatic sufficient and even trying them anyway yielded no help. She contiues to drop weight due to malabsorption, has large BMs with clearly undigested food in them, we have seen a GI who actually found the elevated sweat chloride and ruled out celiac, chron's. She is on a growth hormone because she does not produce enough on her own, but has barley grown. She is 50 inches tall and weighs 61 lbs. and will be 14 next month. I am so confused and I don't even know what kind of specialists to turn to. What do you do when nobody is able to tell you what is wrong with your child? Where do you go for answers when you feel like you have been everywhere? Is it possible that I may never know what is wrong with my daughter? Sorry to rattle on I am just feeling frustrated and defeated in my search for answers. After so many years we thought we had it figured out with the CF and to be told once againg that we don't know is hard to swallow. What would you do now?
I am so sorry the doctors can't make up their mind whether she has CF or not - that sucks. We're sort of in the same boat - they diagnosed my son with Atypical CF because he has GI symptons, FTT, minimal sinus & lung issues, high sweats and absolutley no mutations (full Ambry). I assume that Cincinnati is not the clinic you normally go to, but since you are being sent there to see a GI anyway you might want to see if you can get into their CF clinic for a second opinion on whether they think she has CF or not. There is also a test called the Nasal Potential Test that is helpful in diagnosing CF, but they don't do it at all centers (I know they do it at the Cleveland Rainbow & Babies/University Hospitals CF Clinic though). Also you might want to see the Endocrinologist again and see if there are any syndroms or diseases he can think of why she would be having the high sweat test numbers and GI problems. Our CF clinic referred us to an Endocrinologist recently for that same reason although the appointment isn't for another two weeks.
I am so sorry the doctors can't make up their mind whether she has CF or not - that sucks. We're sort of in the same boat - they diagnosed my son with Atypical CF because he has GI symptons, FTT, minimal sinus & lung issues, high sweats and absolutley no mutations (full Ambry). I assume that Cincinnati is not the clinic you normally go to, but since you are being sent there to see a GI anyway you might want to see if you can get into their CF clinic for a second opinion on whether they think she has CF or not. There is also a test called the Nasal Potential Test that is helpful in diagnosing CF, but they don't do it at all centers (I know they do it at the Cleveland Rainbow & Babies/University Hospitals CF Clinic though). Also you might want to see the Endocrinologist again and see if there are any syndroms or diseases he can think of why she would be having the high sweat test numbers and GI problems. Our CF clinic referred us to an Endocrinologist recently for that same reason although the appointment isn't for another two weeks.
I am so sorry the doctors can't make up their mind whether she has CF or not - that sucks. We're sort of in the same boat - they diagnosed my son with Atypical CF because he has GI symptons, FTT, minimal sinus & lung issues, high sweats and absolutley no mutations (full Ambry). I assume that Cincinnati is not the clinic you normally go to, but since you are being sent there to see a GI anyway you might want to see if you can get into their CF clinic for a second opinion on whether they think she has CF or not. There is also a test called the Nasal Potential Test that is helpful in diagnosing CF, but they don't do it at all centers (I know they do it at the Cleveland Rainbow & Babies/University Hospitals CF Clinic though). Also you might want to see the Endocrinologist again and see if there are any syndroms or diseases he can think of why she would be having the high sweat test numbers and GI problems. Our CF clinic referred us to an Endocrinologist recently for that same reason although the appointment isn't for another two weeks.
I am so sorry the doctors can't make up their mind whether she has CF or not - that sucks. We're sort of in the same boat - they diagnosed my son with Atypical CF because he has GI symptons, FTT, minimal sinus & lung issues, high sweats and absolutley no mutations (full Ambry). I assume that Cincinnati is not the clinic you normally go to, but since you are being sent there to see a GI anyway you might want to see if you can get into their CF clinic for a second opinion on whether they think she has CF or not. There is also a test called the Nasal Potential Test that is helpful in diagnosing CF, but they don't do it at all centers (I know they do it at the Cleveland Rainbow & Babies/University Hospitals CF Clinic though). Also you might want to see the Endocrinologist again and see if there are any syndroms or diseases he can think of why she would be having the high sweat test numbers and GI problems. Our CF clinic referred us to an Endocrinologist recently for that same reason although the appointment isn't for another two weeks.
I am so sorry the doctors can't make up their mind whether she has CF or not - that sucks. We're sort of in the same boat - they diagnosed my son with Atypical CF because he has GI symptons, FTT, minimal sinus & lung issues, high sweats and absolutley no mutations (full Ambry). I assume that Cincinnati is not the clinic you normally go to, but since you are being sent there to see a GI anyway you might want to see if you can get into their CF clinic for a second opinion on whether they think she has CF or not. There is also a test called the Nasal Potential Test that is helpful in diagnosing CF, but they don't do it at all centers (I know they do it at the Cleveland Rainbow & Babies/University Hospitals CF Clinic though). Also you might want to see the Endocrinologist again and see if there are any syndroms or diseases he can think of why she would be having the high sweat test numbers and GI problems. Our CF clinic referred us to an Endocrinologist recently for that same reason although the appointment isn't for another two weeks.
I am so sorry the doctors can't make up their mind whether she has CF or not - that sucks. We're sort of in the same boat - they diagnosed my son with Atypical CF because he has GI symptons, FTT, minimal sinus & lung issues, high sweats and absolutley no mutations (full Ambry). I assume that Cincinnati is not the clinic you normally go to, but since you are being sent there to see a GI anyway you might want to see if you can get into their CF clinic for a second opinion on whether they think she has CF or not. There is also a test called the Nasal Potential Test that is helpful in diagnosing CF, but they don't do it at all centers (I know they do it at the Cleveland Rainbow & Babies/University Hospitals CF Clinic though). Also you might want to see the Endocrinologist again and see if there are any syndroms or diseases he can think of why she would be having the high sweat test numbers and GI problems. Our CF clinic referred us to an Endocrinologist recently for that same reason although the appointment isn't for another two weeks.
I am so sorry you are having such a difficult time figuring out what is wrong with your daughter's health. It must be so scary. I wish i had some advice fory you but unfortunately the only thing i can think of is that your daughter needs to see many specialists and have many tests run until they figure it out. I hope the doctors will help with that.
Good luck. i really hope they get to the bottom of this soon.
Good luck. i really hope they get to the bottom of this soon.
I am so sorry you are having such a difficult time figuring out what is wrong with your daughter's health. It must be so scary. I wish i had some advice fory you but unfortunately the only thing i can think of is that your daughter needs to see many specialists and have many tests run until they figure it out. I hope the doctors will help with that.
Good luck. i really hope they get to the bottom of this soon.
Good luck. i really hope they get to the bottom of this soon.
I am so sorry you are having such a difficult time figuring out what is wrong with your daughter's health. It must be so scary. I wish i had some advice fory you but unfortunately the only thing i can think of is that your daughter needs to see many specialists and have many tests run until they figure it out. I hope the doctors will help with that.
Good luck. i really hope they get to the bottom of this soon.
Good luck. i really hope they get to the bottom of this soon.
I am so sorry you are having such a difficult time figuring out what is wrong with your daughter's health. It must be so scary. I wish i had some advice fory you but unfortunately the only thing i can think of is that your daughter needs to see many specialists and have many tests run until they figure it out. I hope the doctors will help with that.
Good luck. i really hope they get to the bottom of this soon.
Good luck. i really hope they get to the bottom of this soon.
I am so sorry you are having such a difficult time figuring out what is wrong with your daughter's health. It must be so scary. I wish i had some advice fory you but unfortunately the only thing i can think of is that your daughter needs to see many specialists and have many tests run until they figure it out. I hope the doctors will help with that.
Good luck. i really hope they get to the bottom of this soon.
Good luck. i really hope they get to the bottom of this soon.
I am so sorry you are having such a difficult time figuring out what is wrong with your daughter's health. It must be so scary. I wish i had some advice fory you but unfortunately the only thing i can think of is that your daughter needs to see many specialists and have many tests run until they figure it out. I hope the doctors will help with that.
Good luck. i really hope they get to the bottom of this soon.
Good luck. i really hope they get to the bottom of this soon.
Childressj
New member
hey samsmom
Sorry That I have not been on this website much. I am sooo sorry to hear about all of this with Samantha. Trevor's(my almost 14yr old son) pulmonologist has not totally ruled out CF but he is leaning away from it. They are treating him for pneumonacoccal antibody deficient. We just had another series of blood tests run and the antibodies are coming up and he has not had an upper respiratory infection in almost three months now (which is a record for us) His stomach issues are still there, they are trying a trial of "off the meds" to see what happens with that. basically they are thinking that it is a coincendance that he has the borderline sweat test, one F508 gene, upper respiratory symtoms (requiring many asthma maintance meds) and the tummy issues. He is doing well right now so I am feeling ok with all this right now. we will see. The only advice that I can give you is keep on going with your gut....make them explain.............Jennifer
Sorry That I have not been on this website much. I am sooo sorry to hear about all of this with Samantha. Trevor's(my almost 14yr old son) pulmonologist has not totally ruled out CF but he is leaning away from it. They are treating him for pneumonacoccal antibody deficient. We just had another series of blood tests run and the antibodies are coming up and he has not had an upper respiratory infection in almost three months now (which is a record for us) His stomach issues are still there, they are trying a trial of "off the meds" to see what happens with that. basically they are thinking that it is a coincendance that he has the borderline sweat test, one F508 gene, upper respiratory symtoms (requiring many asthma maintance meds) and the tummy issues. He is doing well right now so I am feeling ok with all this right now. we will see. The only advice that I can give you is keep on going with your gut....make them explain.............Jennifer
Childressj
New member
hey samsmom
Sorry That I have not been on this website much. I am sooo sorry to hear about all of this with Samantha. Trevor's(my almost 14yr old son) pulmonologist has not totally ruled out CF but he is leaning away from it. They are treating him for pneumonacoccal antibody deficient. We just had another series of blood tests run and the antibodies are coming up and he has not had an upper respiratory infection in almost three months now (which is a record for us) His stomach issues are still there, they are trying a trial of "off the meds" to see what happens with that. basically they are thinking that it is a coincendance that he has the borderline sweat test, one F508 gene, upper respiratory symtoms (requiring many asthma maintance meds) and the tummy issues. He is doing well right now so I am feeling ok with all this right now. we will see. The only advice that I can give you is keep on going with your gut....make them explain.............Jennifer
Sorry That I have not been on this website much. I am sooo sorry to hear about all of this with Samantha. Trevor's(my almost 14yr old son) pulmonologist has not totally ruled out CF but he is leaning away from it. They are treating him for pneumonacoccal antibody deficient. We just had another series of blood tests run and the antibodies are coming up and he has not had an upper respiratory infection in almost three months now (which is a record for us) His stomach issues are still there, they are trying a trial of "off the meds" to see what happens with that. basically they are thinking that it is a coincendance that he has the borderline sweat test, one F508 gene, upper respiratory symtoms (requiring many asthma maintance meds) and the tummy issues. He is doing well right now so I am feeling ok with all this right now. we will see. The only advice that I can give you is keep on going with your gut....make them explain.............Jennifer