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H

hopesiris

Guest
Amy, not sure I've responded to any of your posts but came across this thread and thought I should say hi. I was diagnosed with CF last year while pregnant. My sweat test was 36, which is considered "near borderline" and of concern if other symptoms are present. We already had my Ambry results when the sweat test was done (I have one severe mutation and a variant that together cause mild CF). My CF was not caught by the 90 panel, it was first thought that I was a only carrier. I've been symptomatic since my early 20's, and my symptoms have been attributed to a host of diseases like asthma, allergies, irritable bowel syndrome, etc. That is very common for adult diagnosed CFers since you look "too healthy" to have CF in the eyes of most uninformed doctors.

I think that if you aren't already going to a CF clinic for evaluation, that's where you and your children need to go to be sure you do not have CF. You say that you've felt there is something wrong with yourself, and that is the way I felt for years. I figured out that I have CF on my own (by reading an adult diagnosis thread on this website), got the Ambry panel and there it was.

PM me if you have any questions. I hope you and your little peanuts are ok.

Bonnie
 
H

hopesiris

Guest
Amy, not sure I've responded to any of your posts but came across this thread and thought I should say hi. I was diagnosed with CF last year while pregnant. My sweat test was 36, which is considered "near borderline" and of concern if other symptoms are present. We already had my Ambry results when the sweat test was done (I have one severe mutation and a variant that together cause mild CF). My CF was not caught by the 90 panel, it was first thought that I was a only carrier. I've been symptomatic since my early 20's, and my symptoms have been attributed to a host of diseases like asthma, allergies, irritable bowel syndrome, etc. That is very common for adult diagnosed CFers since you look "too healthy" to have CF in the eyes of most uninformed doctors.

I think that if you aren't already going to a CF clinic for evaluation, that's where you and your children need to go to be sure you do not have CF. You say that you've felt there is something wrong with yourself, and that is the way I felt for years. I figured out that I have CF on my own (by reading an adult diagnosis thread on this website), got the Ambry panel and there it was.

PM me if you have any questions. I hope you and your little peanuts are ok.

Bonnie
 
H

hopesiris

Guest
Amy, not sure I've responded to any of your posts but came across this thread and thought I should say hi. I was diagnosed with CF last year while pregnant. My sweat test was 36, which is considered "near borderline" and of concern if other symptoms are present. We already had my Ambry results when the sweat test was done (I have one severe mutation and a variant that together cause mild CF). My CF was not caught by the 90 panel, it was first thought that I was a only carrier. I've been symptomatic since my early 20's, and my symptoms have been attributed to a host of diseases like asthma, allergies, irritable bowel syndrome, etc. That is very common for adult diagnosed CFers since you look "too healthy" to have CF in the eyes of most uninformed doctors.

I think that if you aren't already going to a CF clinic for evaluation, that's where you and your children need to go to be sure you do not have CF. You say that you've felt there is something wrong with yourself, and that is the way I felt for years. I figured out that I have CF on my own (by reading an adult diagnosis thread on this website), got the Ambry panel and there it was.

PM me if you have any questions. I hope you and your little peanuts are ok.

Bonnie
 
H

hopesiris

Guest
Amy, not sure I've responded to any of your posts but came across this thread and thought I should say hi. I was diagnosed with CF last year while pregnant. My sweat test was 36, which is considered "near borderline" and of concern if other symptoms are present. We already had my Ambry results when the sweat test was done (I have one severe mutation and a variant that together cause mild CF). My CF was not caught by the 90 panel, it was first thought that I was a only carrier. I've been symptomatic since my early 20's, and my symptoms have been attributed to a host of diseases like asthma, allergies, irritable bowel syndrome, etc. That is very common for adult diagnosed CFers since you look "too healthy" to have CF in the eyes of most uninformed doctors.

I think that if you aren't already going to a CF clinic for evaluation, that's where you and your children need to go to be sure you do not have CF. You say that you've felt there is something wrong with yourself, and that is the way I felt for years. I figured out that I have CF on my own (by reading an adult diagnosis thread on this website), got the Ambry panel and there it was.

PM me if you have any questions. I hope you and your little peanuts are ok.

Bonnie
 
H

hopesiris

Guest
Amy, not sure I've responded to any of your posts but came across this thread and thought I should say hi. I was diagnosed with CF last year while pregnant. My sweat test was 36, which is considered "near borderline" and of concern if other symptoms are present. We already had my Ambry results when the sweat test was done (I have one severe mutation and a variant that together cause mild CF). My CF was not caught by the 90 panel, it was first thought that I was a only carrier. I've been symptomatic since my early 20's, and my symptoms have been attributed to a host of diseases like asthma, allergies, irritable bowel syndrome, etc. That is very common for adult diagnosed CFers since you look "too healthy" to have CF in the eyes of most uninformed doctors.
<br />
<br />I think that if you aren't already going to a CF clinic for evaluation, that's where you and your children need to go to be sure you do not have CF. You say that you've felt there is something wrong with yourself, and that is the way I felt for years. I figured out that I have CF on my own (by reading an adult diagnosis thread on this website), got the Ambry panel and there it was.
<br />
<br />PM me if you have any questions. I hope you and your little peanuts are ok.
<br />
<br />Bonnie
 
A

amyr

New member
My sweat test was 25/26 i can't remember. I am having sinus surgry on the 26th to get rid of polyps and a bone thing? My ENT is going to send my tissue to NIH for testing so praying for answers. I have a sinus infection and some funky throat thing (rapid strept test negative) my doctor has no idea what it could be. My ENT thinks it may be related to my sinus infection. My # 2 son had his 3rd endoscopy still refluxing dispite 4 yrs of 40mg of nexium. His fecal elastase was 356 so we are going to start enzymes and pray for improvement.

My # 3 child's xray on Tues showed sinus disease (allergy testing negative) so she is back on 3wks of antibiotics. My # 4 child still sick from his last Er trip with croup 2 wks ago on nebs every 4 hrs. The mucous is coming out from both ends some with hints of blood. His chest xray was neg for pnemonia so his ped. doesn't want to put him on antibiotics again.

I talked to their pulmanologist tonight who is now back from vacation and he wants the full Ambry test and is going to fax me the rx tomorrow I already have the kit. I need some answers soon I am so worried about my kids. Thank you to everyone for all the feedback and support.
 
A

amyr

New member
My sweat test was 25/26 i can't remember. I am having sinus surgry on the 26th to get rid of polyps and a bone thing? My ENT is going to send my tissue to NIH for testing so praying for answers. I have a sinus infection and some funky throat thing (rapid strept test negative) my doctor has no idea what it could be. My ENT thinks it may be related to my sinus infection. My # 2 son had his 3rd endoscopy still refluxing dispite 4 yrs of 40mg of nexium. His fecal elastase was 356 so we are going to start enzymes and pray for improvement.

My # 3 child's xray on Tues showed sinus disease (allergy testing negative) so she is back on 3wks of antibiotics. My # 4 child still sick from his last Er trip with croup 2 wks ago on nebs every 4 hrs. The mucous is coming out from both ends some with hints of blood. His chest xray was neg for pnemonia so his ped. doesn't want to put him on antibiotics again.

I talked to their pulmanologist tonight who is now back from vacation and he wants the full Ambry test and is going to fax me the rx tomorrow I already have the kit. I need some answers soon I am so worried about my kids. Thank you to everyone for all the feedback and support.
 
A

amyr

New member
My sweat test was 25/26 i can't remember. I am having sinus surgry on the 26th to get rid of polyps and a bone thing? My ENT is going to send my tissue to NIH for testing so praying for answers. I have a sinus infection and some funky throat thing (rapid strept test negative) my doctor has no idea what it could be. My ENT thinks it may be related to my sinus infection. My # 2 son had his 3rd endoscopy still refluxing dispite 4 yrs of 40mg of nexium. His fecal elastase was 356 so we are going to start enzymes and pray for improvement.

My # 3 child's xray on Tues showed sinus disease (allergy testing negative) so she is back on 3wks of antibiotics. My # 4 child still sick from his last Er trip with croup 2 wks ago on nebs every 4 hrs. The mucous is coming out from both ends some with hints of blood. His chest xray was neg for pnemonia so his ped. doesn't want to put him on antibiotics again.

I talked to their pulmanologist tonight who is now back from vacation and he wants the full Ambry test and is going to fax me the rx tomorrow I already have the kit. I need some answers soon I am so worried about my kids. Thank you to everyone for all the feedback and support.
 
A

amyr

New member
My sweat test was 25/26 i can't remember. I am having sinus surgry on the 26th to get rid of polyps and a bone thing? My ENT is going to send my tissue to NIH for testing so praying for answers. I have a sinus infection and some funky throat thing (rapid strept test negative) my doctor has no idea what it could be. My ENT thinks it may be related to my sinus infection. My # 2 son had his 3rd endoscopy still refluxing dispite 4 yrs of 40mg of nexium. His fecal elastase was 356 so we are going to start enzymes and pray for improvement.

My # 3 child's xray on Tues showed sinus disease (allergy testing negative) so she is back on 3wks of antibiotics. My # 4 child still sick from his last Er trip with croup 2 wks ago on nebs every 4 hrs. The mucous is coming out from both ends some with hints of blood. His chest xray was neg for pnemonia so his ped. doesn't want to put him on antibiotics again.

I talked to their pulmanologist tonight who is now back from vacation and he wants the full Ambry test and is going to fax me the rx tomorrow I already have the kit. I need some answers soon I am so worried about my kids. Thank you to everyone for all the feedback and support.
 
A

amyr

New member
My sweat test was 25/26 i can't remember. I am having sinus surgry on the 26th to get rid of polyps and a bone thing? My ENT is going to send my tissue to NIH for testing so praying for answers. I have a sinus infection and some funky throat thing (rapid strept test negative) my doctor has no idea what it could be. My ENT thinks it may be related to my sinus infection. My # 2 son had his 3rd endoscopy still refluxing dispite 4 yrs of 40mg of nexium. His fecal elastase was 356 so we are going to start enzymes and pray for improvement.
<br />
<br />My # 3 child's xray on Tues showed sinus disease (allergy testing negative) so she is back on 3wks of antibiotics. My # 4 child still sick from his last Er trip with croup 2 wks ago on nebs every 4 hrs. The mucous is coming out from both ends some with hints of blood. His chest xray was neg for pnemonia so his ped. doesn't want to put him on antibiotics again.
<br />
<br />I talked to their pulmanologist tonight who is now back from vacation and he wants the full Ambry test and is going to fax me the rx tomorrow I already have the kit. I need some answers soon I am so worried about my kids. Thank you to everyone for all the feedback and support.
 
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