I think I might be crazy - UPDATE

S

sunflower72

New member
I think I might be crazy

So, turns out I am not crazy. We went to the asthma doc htis morning and surprise - he has walking pneumonia. I think this is the 4th or 5th time he has had pneumonia and he is now medicated all the time for asthma.

The doctor (without my saying a word about CF) ordered a milk scan and a sweat test. I never thought I would pray for my son to have reflux. I was able to get both tests scheduled for tomorrow. I asked about the reliability of the sweat test, and the doc said lets see what happens with these two tests and if they are both negative, we will order bloodwork.

Thank you for your replies. I will check back in when the results are in.
 
S

sunflower72

New member
I think I might be crazy

So, turns out I am not crazy. We went to the asthma doc htis morning and surprise - he has walking pneumonia. I think this is the 4th or 5th time he has had pneumonia and he is now medicated all the time for asthma.

The doctor (without my saying a word about CF) ordered a milk scan and a sweat test. I never thought I would pray for my son to have reflux. I was able to get both tests scheduled for tomorrow. I asked about the reliability of the sweat test, and the doc said lets see what happens with these two tests and if they are both negative, we will order bloodwork.

Thank you for your replies. I will check back in when the results are in.
 
S

sunflower72

New member
I think I might be crazy

So, turns out I am not crazy. We went to the asthma doc htis morning and surprise - he has walking pneumonia. I think this is the 4th or 5th time he has had pneumonia and he is now medicated all the time for asthma.

The doctor (without my saying a word about CF) ordered a milk scan and a sweat test. I never thought I would pray for my son to have reflux. I was able to get both tests scheduled for tomorrow. I asked about the reliability of the sweat test, and the doc said lets see what happens with these two tests and if they are both negative, we will order bloodwork.

Thank you for your replies. I will check back in when the results are in.
 
S

sunflower72

New member
I think I might be crazy

So, turns out I am not crazy. We went to the asthma doc htis morning and surprise - he has walking pneumonia. I think this is the 4th or 5th time he has had pneumonia and he is now medicated all the time for asthma.

The doctor (without my saying a word about CF) ordered a milk scan and a sweat test. I never thought I would pray for my son to have reflux. I was able to get both tests scheduled for tomorrow. I asked about the reliability of the sweat test, and the doc said lets see what happens with these two tests and if they are both negative, we will order bloodwork.

Thank you for your replies. I will check back in when the results are in.
 
S

sunflower72

New member
I think I might be crazy

So, turns out I am not crazy. We went to the asthma doc htis morning and surprise - he has walking pneumonia. I think this is the 4th or 5th time he has had pneumonia and he is now medicated all the time for asthma.

The doctor (without my saying a word about CF) ordered a milk scan and a sweat test. I never thought I would pray for my son to have reflux. I was able to get both tests scheduled for tomorrow. I asked about the reliability of the sweat test, and the doc said lets see what happens with these two tests and if they are both negative, we will order bloodwork.

Thank you for your replies. I will check back in when the results are in.
 
M

MYBOY

New member
I think I might be crazy

I wish you luck! I agree with all the others. When my son was 6 months old - I took him to a new city doctor because his doctor didn't think anything was wrong. My city doc (which had never seen us)guessed CF right away - I knew NOTHING about cf. He gave me the choice to go to the hospital for test until we could figure out what was wrong - I said YES my kid is not suffering anymore! - we will find out what is wrong. And we did! I'm glad you are doing the testing - it is not fair for your son to suffer if he could be treated and starts feeling better! I hope it isn't CF - but if it is he (and you)will feel so much better getting the PROPER treatments!
 
M

MYBOY

New member
I think I might be crazy

I wish you luck! I agree with all the others. When my son was 6 months old - I took him to a new city doctor because his doctor didn't think anything was wrong. My city doc (which had never seen us)guessed CF right away - I knew NOTHING about cf. He gave me the choice to go to the hospital for test until we could figure out what was wrong - I said YES my kid is not suffering anymore! - we will find out what is wrong. And we did! I'm glad you are doing the testing - it is not fair for your son to suffer if he could be treated and starts feeling better! I hope it isn't CF - but if it is he (and you)will feel so much better getting the PROPER treatments!
 
M

MYBOY

New member
I think I might be crazy

I wish you luck! I agree with all the others. When my son was 6 months old - I took him to a new city doctor because his doctor didn't think anything was wrong. My city doc (which had never seen us)guessed CF right away - I knew NOTHING about cf. He gave me the choice to go to the hospital for test until we could figure out what was wrong - I said YES my kid is not suffering anymore! - we will find out what is wrong. And we did! I'm glad you are doing the testing - it is not fair for your son to suffer if he could be treated and starts feeling better! I hope it isn't CF - but if it is he (and you)will feel so much better getting the PROPER treatments!
 
M

MYBOY

New member
I think I might be crazy

I wish you luck! I agree with all the others. When my son was 6 months old - I took him to a new city doctor because his doctor didn't think anything was wrong. My city doc (which had never seen us)guessed CF right away - I knew NOTHING about cf. He gave me the choice to go to the hospital for test until we could figure out what was wrong - I said YES my kid is not suffering anymore! - we will find out what is wrong. And we did! I'm glad you are doing the testing - it is not fair for your son to suffer if he could be treated and starts feeling better! I hope it isn't CF - but if it is he (and you)will feel so much better getting the PROPER treatments!
 
M

MYBOY

New member
I think I might be crazy

I wish you luck! I agree with all the others. When my son was 6 months old - I took him to a new city doctor because his doctor didn't think anything was wrong. My city doc (which had never seen us)guessed CF right away - I knew NOTHING about cf. He gave me the choice to go to the hospital for test until we could figure out what was wrong - I said YES my kid is not suffering anymore! - we will find out what is wrong. And we did! I'm glad you are doing the testing - it is not fair for your son to suffer if he could be treated and starts feeling better! I hope it isn't CF - but if it is he (and you)will feel so much better getting the PROPER treatments!
 
A

Alyssa

New member
I think I might be crazy

Glad you are getting the sweat test. To briefly answer some of your questions:

Yes, you can get lung issues only - somewhere around 20% (I think) of people with CF are pancreatic sufficient, so digestion and weight gain are not in the mix.

Yes, sweat tests can be inconclusive or even misleading - the official guideline is anything under 40 is considered normal but that really is not the case with many many people - see my blog and search the archives here for others - many people with CF have sweat test numbers in the 20's and 30's, later confirmed with genetic testing. So be sure to follow through with genetic testing.
 
A

Alyssa

New member
I think I might be crazy

Glad you are getting the sweat test. To briefly answer some of your questions:

Yes, you can get lung issues only - somewhere around 20% (I think) of people with CF are pancreatic sufficient, so digestion and weight gain are not in the mix.

Yes, sweat tests can be inconclusive or even misleading - the official guideline is anything under 40 is considered normal but that really is not the case with many many people - see my blog and search the archives here for others - many people with CF have sweat test numbers in the 20's and 30's, later confirmed with genetic testing. So be sure to follow through with genetic testing.
 
A

Alyssa

New member
I think I might be crazy

Glad you are getting the sweat test. To briefly answer some of your questions:

Yes, you can get lung issues only - somewhere around 20% (I think) of people with CF are pancreatic sufficient, so digestion and weight gain are not in the mix.

Yes, sweat tests can be inconclusive or even misleading - the official guideline is anything under 40 is considered normal but that really is not the case with many many people - see my blog and search the archives here for others - many people with CF have sweat test numbers in the 20's and 30's, later confirmed with genetic testing. So be sure to follow through with genetic testing.
 
A

Alyssa

New member
I think I might be crazy

Glad you are getting the sweat test. To briefly answer some of your questions:

Yes, you can get lung issues only - somewhere around 20% (I think) of people with CF are pancreatic sufficient, so digestion and weight gain are not in the mix.

Yes, sweat tests can be inconclusive or even misleading - the official guideline is anything under 40 is considered normal but that really is not the case with many many people - see my blog and search the archives here for others - many people with CF have sweat test numbers in the 20's and 30's, later confirmed with genetic testing. So be sure to follow through with genetic testing.
 
A

Alyssa

New member
I think I might be crazy

Glad you are getting the sweat test. To briefly answer some of your questions:

Yes, you can get lung issues only - somewhere around 20% (I think) of people with CF are pancreatic sufficient, so digestion and weight gain are not in the mix.

Yes, sweat tests can be inconclusive or even misleading - the official guideline is anything under 40 is considered normal but that really is not the case with many many people - see my blog and search the archives here for others - many people with CF have sweat test numbers in the 20's and 30's, later confirmed with genetic testing. So be sure to follow through with genetic testing.
 
C

clawson5104

New member
I think I might be crazy

My son is pacreatic sufficient. Not a great eater most of the time, and is only in the 5th percentile for weight. His problems were usually blamed on viruses, allergies, then it was asthma......till Mommy kicked in and said....SOMETHING IS NOT RIGHT. glad I did. his bm's were constipation to diarrhea, smelly etc. but still all his fecal, pancreatic tests come back good. he has severe reflux...and since he is on prevacid that seems to be a little better. So, most of my son's problems were lung issues. And my son is a serious sweater, but he is salty. He is anemic also. so yeah, you can have mainly lung issues, and no or little digestive issues with CF. Hope u get answers soon. keep us posted!
 
C

clawson5104

New member
I think I might be crazy

My son is pacreatic sufficient. Not a great eater most of the time, and is only in the 5th percentile for weight. His problems were usually blamed on viruses, allergies, then it was asthma......till Mommy kicked in and said....SOMETHING IS NOT RIGHT. glad I did. his bm's were constipation to diarrhea, smelly etc. but still all his fecal, pancreatic tests come back good. he has severe reflux...and since he is on prevacid that seems to be a little better. So, most of my son's problems were lung issues. And my son is a serious sweater, but he is salty. He is anemic also. so yeah, you can have mainly lung issues, and no or little digestive issues with CF. Hope u get answers soon. keep us posted!
 
C

clawson5104

New member
I think I might be crazy

My son is pacreatic sufficient. Not a great eater most of the time, and is only in the 5th percentile for weight. His problems were usually blamed on viruses, allergies, then it was asthma......till Mommy kicked in and said....SOMETHING IS NOT RIGHT. glad I did. his bm's were constipation to diarrhea, smelly etc. but still all his fecal, pancreatic tests come back good. he has severe reflux...and since he is on prevacid that seems to be a little better. So, most of my son's problems were lung issues. And my son is a serious sweater, but he is salty. He is anemic also. so yeah, you can have mainly lung issues, and no or little digestive issues with CF. Hope u get answers soon. keep us posted!
 
C

clawson5104

New member
I think I might be crazy

My son is pacreatic sufficient. Not a great eater most of the time, and is only in the 5th percentile for weight. His problems were usually blamed on viruses, allergies, then it was asthma......till Mommy kicked in and said....SOMETHING IS NOT RIGHT. glad I did. his bm's were constipation to diarrhea, smelly etc. but still all his fecal, pancreatic tests come back good. he has severe reflux...and since he is on prevacid that seems to be a little better. So, most of my son's problems were lung issues. And my son is a serious sweater, but he is salty. He is anemic also. so yeah, you can have mainly lung issues, and no or little digestive issues with CF. Hope u get answers soon. keep us posted!
 
C

clawson5104

New member
I think I might be crazy

My son is pacreatic sufficient. Not a great eater most of the time, and is only in the 5th percentile for weight. His problems were usually blamed on viruses, allergies, then it was asthma......till Mommy kicked in and said....SOMETHING IS NOT RIGHT. glad I did. his bm's were constipation to diarrhea, smelly etc. but still all his fecal, pancreatic tests come back good. he has severe reflux...and since he is on prevacid that seems to be a little better. So, most of my son's problems were lung issues. And my son is a serious sweater, but he is salty. He is anemic also. so yeah, you can have mainly lung issues, and no or little digestive issues with CF. Hope u get answers soon. keep us posted!
 
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