Diagnosed Yesterday

[emilyspeanut]

My son age 7 was diagnosed yesterday. We had 2 positive sweat tests. The doctor said it is mild. Does that make it better?? I am so confused! Weare receiving a vest that he has to do 2 times a day and he has been on Albuterol and Pulmocort for some time now. What do I expect now? He was up all night last night coughing until he threw up. I feel so helpless.

 

[emilyspeanut]

My son age 7 was diagnosed yesterday. We had 2 positive sweat tests. The doctor said it is mild. Does that make it better?? I am so confused! Weare receiving a vest that he has to do 2 times a day and he has been on Albuterol and Pulmocort for some time now. What do I expect now? He was up all night last night coughing until he threw up. I feel so helpless.

 

[emilyspeanut]

My son age 7 was diagnosed yesterday. We had 2 positive sweat tests. The doctor said it is mild. Does that make it better?? I am so confused! Weare receiving a vest that he has to do 2 times a day and he has been on Albuterol and Pulmocort for some time now. What do I expect now? He was up all night last night coughing until he threw up. I feel so helpless.

 

[emilyspeanut]

My son age 7 was diagnosed yesterday. We had 2 positive sweat tests. The doctor said it is mild. Does that make it better?? I am so confused! Weare receiving a vest that he has to do 2 times a day and he has been on Albuterol and Pulmocort for some time now. What do I expect now? He was up all night last night coughing until he threw up. I feel so helpless.

 

[emilyspeanut]

My son age 7 was diagnosed yesterday. We had 2 positive sweat tests. The doctor said it is mild. Does that make it better?? I am so confused! Weare receiving a vest that he has to do 2 times a day and he has been on Albuterol and Pulmocort for some time now. What do I expect now? He was up all night last night coughing until he threw up. I feel so helpless.

 

[Ratatosk]

Are you going to an accreditted CF Center? If not, I suggest you look into it. Have they done genetic testing to figure out what his mutations are?

I tend to take issue with the doctor telling you the CF is mild because it's hard to determine how one will be affected by CF.

The important thing is to make sure you're proactive -- vest, nebs, clinic appointments with bloodwork to see if he's getting adequate nutrition (vitamin levels)..

 

[Ratatosk]

Are you going to an accreditted CF Center? If not, I suggest you look into it. Have they done genetic testing to figure out what his mutations are?

I tend to take issue with the doctor telling you the CF is mild because it's hard to determine how one will be affected by CF.

The important thing is to make sure you're proactive -- vest, nebs, clinic appointments with bloodwork to see if he's getting adequate nutrition (vitamin levels)..

 

[Ratatosk]

Are you going to an accreditted CF Center? If not, I suggest you look into it. Have they done genetic testing to figure out what his mutations are?

I tend to take issue with the doctor telling you the CF is mild because it's hard to determine how one will be affected by CF.

The important thing is to make sure you're proactive -- vest, nebs, clinic appointments with bloodwork to see if he's getting adequate nutrition (vitamin levels)..

 

[Ratatosk]

Are you going to an accreditted CF Center? If not, I suggest you look into it. Have they done genetic testing to figure out what his mutations are?

I tend to take issue with the doctor telling you the CF is mild because it's hard to determine how one will be affected by CF.

The important thing is to make sure you're proactive -- vest, nebs, clinic appointments with bloodwork to see if he's getting adequate nutrition (vitamin levels)..

 

[Ratatosk]

Are you going to an accreditted CF Center? If not, I suggest you look into it. Have they done genetic testing to figure out what his mutations are?
<br />
<br />I tend to take issue with the doctor telling you the CF is mild because it's hard to determine how one will be affected by CF.
<br />
<br />The important thing is to make sure you're proactive -- vest, nebs, clinic appointments with bloodwork to see if he's getting adequate nutrition (vitamin levels)..

 

[emilyspeanut]

Oh yes we are at an accreditted center. our doctor is absolutely wonderful! They did the genetic testing but due to insurance reasons they did not test all 1500 mutations. They did not let us know what the mutation is. I will ask when I go back.
We are being very diligent with all of the bloodwork, vest, neb etc. I just want what is best for my son. I am very confused by all of this. It os very new to me. I just thought he had asthama.

 

[emilyspeanut]

Oh yes we are at an accreditted center. our doctor is absolutely wonderful! They did the genetic testing but due to insurance reasons they did not test all 1500 mutations. They did not let us know what the mutation is. I will ask when I go back.
We are being very diligent with all of the bloodwork, vest, neb etc. I just want what is best for my son. I am very confused by all of this. It os very new to me. I just thought he had asthama.

 

[emilyspeanut]

Oh yes we are at an accreditted center. our doctor is absolutely wonderful! They did the genetic testing but due to insurance reasons they did not test all 1500 mutations. They did not let us know what the mutation is. I will ask when I go back.
We are being very diligent with all of the bloodwork, vest, neb etc. I just want what is best for my son. I am very confused by all of this. It os very new to me. I just thought he had asthama.

 

[emilyspeanut]

Oh yes we are at an accreditted center. our doctor is absolutely wonderful! They did the genetic testing but due to insurance reasons they did not test all 1500 mutations. They did not let us know what the mutation is. I will ask when I go back.
We are being very diligent with all of the bloodwork, vest, neb etc. I just want what is best for my son. I am very confused by all of this. It os very new to me. I just thought he had asthama.

 

[emilyspeanut]

Oh yes we are at an accreditted center. our doctor is absolutely wonderful! They did the genetic testing but due to insurance reasons they did not test all 1500 mutations. They did not let us know what the mutation is. I will ask when I go back.
<br />We are being very diligent with all of the bloodwork, vest, neb etc. I just want what is best for my son. I am very confused by all of this. It os very new to me. I just thought he had asthama.

 

[hmw]

I am so glad that your son is getting his care from a good center and that you like his doctor. That is so important!

I hope you are able to find out his mutations when you have his next clinic appt. I don't really like it when drs say 'mild' either. In addition to what Liza posted above, they may have told you his case was mild due to what mutations he has; some are, at times, associated with milder disease. However, there are differences in disease presentation even amongst those with the same mutations so making predictions can be very tricky.

My daughter was also dx'ed at age 7, a year ago. I understand your feelings of helplessness and confusion. We, too, thought it was 'just' other issues- never once knowing CF was even a possibility until a few days before her diagnosis. It will take some time for the newness of it all to sink in, it is a big shock to get a dx like this. This site is such a good place to get support and I am so glad I found it. The social worker at your CF center might also be an excellent source of support for you (ours is wonderful!)

 

[hmw]

I am so glad that your son is getting his care from a good center and that you like his doctor. That is so important!

I hope you are able to find out his mutations when you have his next clinic appt. I don't really like it when drs say 'mild' either. In addition to what Liza posted above, they may have told you his case was mild due to what mutations he has; some are, at times, associated with milder disease. However, there are differences in disease presentation even amongst those with the same mutations so making predictions can be very tricky.

My daughter was also dx'ed at age 7, a year ago. I understand your feelings of helplessness and confusion. We, too, thought it was 'just' other issues- never once knowing CF was even a possibility until a few days before her diagnosis. It will take some time for the newness of it all to sink in, it is a big shock to get a dx like this. This site is such a good place to get support and I am so glad I found it. The social worker at your CF center might also be an excellent source of support for you (ours is wonderful!)

 

[hmw]

I am so glad that your son is getting his care from a good center and that you like his doctor. That is so important!

I hope you are able to find out his mutations when you have his next clinic appt. I don't really like it when drs say 'mild' either. In addition to what Liza posted above, they may have told you his case was mild due to what mutations he has; some are, at times, associated with milder disease. However, there are differences in disease presentation even amongst those with the same mutations so making predictions can be very tricky.

My daughter was also dx'ed at age 7, a year ago. I understand your feelings of helplessness and confusion. We, too, thought it was 'just' other issues- never once knowing CF was even a possibility until a few days before her diagnosis. It will take some time for the newness of it all to sink in, it is a big shock to get a dx like this. This site is such a good place to get support and I am so glad I found it. The social worker at your CF center might also be an excellent source of support for you (ours is wonderful!)

 

[hmw]

I am so glad that your son is getting his care from a good center and that you like his doctor. That is so important!

I hope you are able to find out his mutations when you have his next clinic appt. I don't really like it when drs say 'mild' either. In addition to what Liza posted above, they may have told you his case was mild due to what mutations he has; some are, at times, associated with milder disease. However, there are differences in disease presentation even amongst those with the same mutations so making predictions can be very tricky.

My daughter was also dx'ed at age 7, a year ago. I understand your feelings of helplessness and confusion. We, too, thought it was 'just' other issues- never once knowing CF was even a possibility until a few days before her diagnosis. It will take some time for the newness of it all to sink in, it is a big shock to get a dx like this. This site is such a good place to get support and I am so glad I found it. The social worker at your CF center might also be an excellent source of support for you (ours is wonderful!)

 

[hmw]

I am so glad that your son is getting his care from a good center and that you like his doctor. That is so important!
<br />
<br />I hope you are able to find out his mutations when you have his next clinic appt. I don't really like it when drs say 'mild' either. In addition to what Liza posted above, they may have told you his case was mild due to what mutations he has; some are, at times, associated with milder disease. However, there are differences in disease presentation even amongst those with the same mutations so making predictions can be very tricky.
<br />
<br />My daughter was also dx'ed at age 7, a year ago. I understand your feelings of helplessness and confusion. We, too, thought it was 'just' other issues- never once knowing CF was even a possibility until a few days before her diagnosis. It will take some time for the newness of it all to sink in, it is a big shock to get a dx like this. This site is such a good place to get support and I am so glad I found it. The social worker at your CF center might also be an excellent source of support for you (ours is wonderful!)