Still no answer

[tabacue]

I posted a few months back unsure of what is going on with my son. I really appreciated all the feedback I received and wanted to try again. Wy had sweat tests done early in March, but he didn't produce enough sweat. Lady at lab said, "he doesn't look like a CF kid". Immunologist also doesn't believe it is CF. I look at the pictures of all the beautiful children on this board and they don't look any different than my own children.

He was tested for allergies and only came back with a "marginal allergy" to dust mites. He did come back with a slight IgG deficiency. He was given a different type of pnemuococcal(sp?) vaccine, but the lab mistakenly did not do the test to see if his antibody levels had improved. Wyatt In the 8-9 weeks between visits he already had two antibiotics and OraPred (over a two week period). He was actually on Amoxicillin when a week or so into it he got worse and was given something else and the OraPred along with his Pulmicort and Albuterol, which we did for about 3-4 weeks. He has an appt with the immunologist in July and it was his hope that we wouldn't need any treatment in between. Well, last week he started coughing, ran a really low grade fever, and was so congested that he didn't sound like the same kid. I started his treatments, took him to the dr and the doctor gave him OraPred again. So he has had OraPred twice in the last month or so.

Does this sound familiar to anyone? I just don't understand what could be making him sick. If he doesn't have allergies then what could it be?

 

[tabacue]

I posted a few months back unsure of what is going on with my son. I really appreciated all the feedback I received and wanted to try again. Wy had sweat tests done early in March, but he didn't produce enough sweat. Lady at lab said, "he doesn't look like a CF kid". Immunologist also doesn't believe it is CF. I look at the pictures of all the beautiful children on this board and they don't look any different than my own children.

He was tested for allergies and only came back with a "marginal allergy" to dust mites. He did come back with a slight IgG deficiency. He was given a different type of pnemuococcal(sp?) vaccine, but the lab mistakenly did not do the test to see if his antibody levels had improved. Wyatt In the 8-9 weeks between visits he already had two antibiotics and OraPred (over a two week period). He was actually on Amoxicillin when a week or so into it he got worse and was given something else and the OraPred along with his Pulmicort and Albuterol, which we did for about 3-4 weeks. He has an appt with the immunologist in July and it was his hope that we wouldn't need any treatment in between. Well, last week he started coughing, ran a really low grade fever, and was so congested that he didn't sound like the same kid. I started his treatments, took him to the dr and the doctor gave him OraPred again. So he has had OraPred twice in the last month or so.

Does this sound familiar to anyone? I just don't understand what could be making him sick. If he doesn't have allergies then what could it be?

 

[tabacue]

I posted a few months back unsure of what is going on with my son. I really appreciated all the feedback I received and wanted to try again. Wy had sweat tests done early in March, but he didn't produce enough sweat. Lady at lab said, "he doesn't look like a CF kid". Immunologist also doesn't believe it is CF. I look at the pictures of all the beautiful children on this board and they don't look any different than my own children.

He was tested for allergies and only came back with a "marginal allergy" to dust mites. He did come back with a slight IgG deficiency. He was given a different type of pnemuococcal(sp?) vaccine, but the lab mistakenly did not do the test to see if his antibody levels had improved. Wyatt In the 8-9 weeks between visits he already had two antibiotics and OraPred (over a two week period). He was actually on Amoxicillin when a week or so into it he got worse and was given something else and the OraPred along with his Pulmicort and Albuterol, which we did for about 3-4 weeks. He has an appt with the immunologist in July and it was his hope that we wouldn't need any treatment in between. Well, last week he started coughing, ran a really low grade fever, and was so congested that he didn't sound like the same kid. I started his treatments, took him to the dr and the doctor gave him OraPred again. So he has had OraPred twice in the last month or so.

Does this sound familiar to anyone? I just don't understand what could be making him sick. If he doesn't have allergies then what could it be?

 

[tabacue]

I posted a few months back unsure of what is going on with my son. I really appreciated all the feedback I received and wanted to try again. Wy had sweat tests done early in March, but he didn't produce enough sweat. Lady at lab said, "he doesn't look like a CF kid". Immunologist also doesn't believe it is CF. I look at the pictures of all the beautiful children on this board and they don't look any different than my own children.

He was tested for allergies and only came back with a "marginal allergy" to dust mites. He did come back with a slight IgG deficiency. He was given a different type of pnemuococcal(sp?) vaccine, but the lab mistakenly did not do the test to see if his antibody levels had improved. Wyatt In the 8-9 weeks between visits he already had two antibiotics and OraPred (over a two week period). He was actually on Amoxicillin when a week or so into it he got worse and was given something else and the OraPred along with his Pulmicort and Albuterol, which we did for about 3-4 weeks. He has an appt with the immunologist in July and it was his hope that we wouldn't need any treatment in between. Well, last week he started coughing, ran a really low grade fever, and was so congested that he didn't sound like the same kid. I started his treatments, took him to the dr and the doctor gave him OraPred again. So he has had OraPred twice in the last month or so.

Does this sound familiar to anyone? I just don't understand what could be making him sick. If he doesn't have allergies then what could it be?

 

[tabacue]

I posted a few months back unsure of what is going on with my son. I really appreciated all the feedback I received and wanted to try again. Wy had sweat tests done early in March, but he didn't produce enough sweat. Lady at lab said, "he doesn't look like a CF kid". Immunologist also doesn't believe it is CF. I look at the pictures of all the beautiful children on this board and they don't look any different than my own children.
<br />
<br />He was tested for allergies and only came back with a "marginal allergy" to dust mites. He did come back with a slight IgG deficiency. He was given a different type of pnemuococcal(sp?) vaccine, but the lab mistakenly did not do the test to see if his antibody levels had improved. Wyatt In the 8-9 weeks between visits he already had two antibiotics and OraPred (over a two week period). He was actually on Amoxicillin when a week or so into it he got worse and was given something else and the OraPred along with his Pulmicort and Albuterol, which we did for about 3-4 weeks. He has an appt with the immunologist in July and it was his hope that we wouldn't need any treatment in between. Well, last week he started coughing, ran a really low grade fever, and was so congested that he didn't sound like the same kid. I started his treatments, took him to the dr and the doctor gave him OraPred again. So he has had OraPred twice in the last month or so.
<br />
<br />Does this sound familiar to anyone? I just don't understand what could be making him sick. If he doesn't have allergies then what could it be?

 

[Mommafirst]

What the heck does a lab tech know about what a CF kid looks like?? Stupid comments like that are thrown out to make you feel better, but cause a good deal of harm. Believe me, my daughter doesn't look any different than other kids -- there is no way you could guess she has CF. I've seen lots and lots of pictures posted on this board over the years and I just don't think there is a CF look. Even those with CF who are quite ill and waiting for transplant can look quite normal on the outside.

OK, my rant is over. Now to your issue...there is no way to rule CF out without extensive genetic testing. Doctors can't just look at them and say it doesn't seem like Cf. If he has respiratory issues that are not allergy based (and even if they ARE allergy based) it could surely be CF. Keep pushing the doctors for more testing. If the sweat test reveals nothing, have genetics done. I know its hard and overwhelming, but just keep pushing till you get some real answers.

 

[Mommafirst]

What the heck does a lab tech know about what a CF kid looks like?? Stupid comments like that are thrown out to make you feel better, but cause a good deal of harm. Believe me, my daughter doesn't look any different than other kids -- there is no way you could guess she has CF. I've seen lots and lots of pictures posted on this board over the years and I just don't think there is a CF look. Even those with CF who are quite ill and waiting for transplant can look quite normal on the outside.

OK, my rant is over. Now to your issue...there is no way to rule CF out without extensive genetic testing. Doctors can't just look at them and say it doesn't seem like Cf. If he has respiratory issues that are not allergy based (and even if they ARE allergy based) it could surely be CF. Keep pushing the doctors for more testing. If the sweat test reveals nothing, have genetics done. I know its hard and overwhelming, but just keep pushing till you get some real answers.

 

[Mommafirst]

What the heck does a lab tech know about what a CF kid looks like?? Stupid comments like that are thrown out to make you feel better, but cause a good deal of harm. Believe me, my daughter doesn't look any different than other kids -- there is no way you could guess she has CF. I've seen lots and lots of pictures posted on this board over the years and I just don't think there is a CF look. Even those with CF who are quite ill and waiting for transplant can look quite normal on the outside.

OK, my rant is over. Now to your issue...there is no way to rule CF out without extensive genetic testing. Doctors can't just look at them and say it doesn't seem like Cf. If he has respiratory issues that are not allergy based (and even if they ARE allergy based) it could surely be CF. Keep pushing the doctors for more testing. If the sweat test reveals nothing, have genetics done. I know its hard and overwhelming, but just keep pushing till you get some real answers.

 

[Mommafirst]

What the heck does a lab tech know about what a CF kid looks like?? Stupid comments like that are thrown out to make you feel better, but cause a good deal of harm. Believe me, my daughter doesn't look any different than other kids -- there is no way you could guess she has CF. I've seen lots and lots of pictures posted on this board over the years and I just don't think there is a CF look. Even those with CF who are quite ill and waiting for transplant can look quite normal on the outside.

OK, my rant is over. Now to your issue...there is no way to rule CF out without extensive genetic testing. Doctors can't just look at them and say it doesn't seem like Cf. If he has respiratory issues that are not allergy based (and even if they ARE allergy based) it could surely be CF. Keep pushing the doctors for more testing. If the sweat test reveals nothing, have genetics done. I know its hard and overwhelming, but just keep pushing till you get some real answers.

 

[Mommafirst]

What the heck does a lab tech know about what a CF kid looks like?? Stupid comments like that are thrown out to make you feel better, but cause a good deal of harm. Believe me, my daughter doesn't look any different than other kids -- there is no way you could guess she has CF. I've seen lots and lots of pictures posted on this board over the years and I just don't think there is a CF look. Even those with CF who are quite ill and waiting for transplant can look quite normal on the outside.
<br />
<br />OK, my rant is over. Now to your issue...there is no way to rule CF out without extensive genetic testing. Doctors can't just look at them and say it doesn't seem like Cf. If he has respiratory issues that are not allergy based (and even if they ARE allergy based) it could surely be CF. Keep pushing the doctors for more testing. If the sweat test reveals nothing, have genetics done. I know its hard and overwhelming, but just keep pushing till you get some real answers.

 

[Ratatosk]

I agree -- only way to tell is with extensive genetic testing. DS was one of those who passed his sweat test with a normal 32.

While I'm glad DS DOES look healthy, and for the most part IS healthy, it drives me nuts when people give me that almost accusatory comment of "he doesn't LOOK sick".

 

[Ratatosk]

I agree -- only way to tell is with extensive genetic testing. DS was one of those who passed his sweat test with a normal 32.

While I'm glad DS DOES look healthy, and for the most part IS healthy, it drives me nuts when people give me that almost accusatory comment of "he doesn't LOOK sick".

 

[Ratatosk]

I agree -- only way to tell is with extensive genetic testing. DS was one of those who passed his sweat test with a normal 32.

While I'm glad DS DOES look healthy, and for the most part IS healthy, it drives me nuts when people give me that almost accusatory comment of "he doesn't LOOK sick".

 

[Ratatosk]

I agree -- only way to tell is with extensive genetic testing. DS was one of those who passed his sweat test with a normal 32.

While I'm glad DS DOES look healthy, and for the most part IS healthy, it drives me nuts when people give me that almost accusatory comment of "he doesn't LOOK sick".

 

[Ratatosk]

I agree -- only way to tell is with extensive genetic testing. DS was one of those who passed his sweat test with a normal 32.
<br />
<br />While I'm glad DS DOES look healthy, and for the most part IS healthy, it drives me nuts when people give me that almost accusatory comment of "he doesn't LOOK sick".

 

[tabacue]

Thanks - It struck a nerve with me too - especially the lady in the lab. I don't know why the immunologist thinks it wouldn't be CF...he has only seen my child twice. They mentioned the mass of paperwork in his file but I wonder if he actually READ any of it. I am just at wit's end. I can't even work a normal work week because every couple of weeks it is something.

 

[tabacue]

Thanks - It struck a nerve with me too - especially the lady in the lab. I don't know why the immunologist thinks it wouldn't be CF...he has only seen my child twice. They mentioned the mass of paperwork in his file but I wonder if he actually READ any of it. I am just at wit's end. I can't even work a normal work week because every couple of weeks it is something.

 

[tabacue]

Thanks - It struck a nerve with me too - especially the lady in the lab. I don't know why the immunologist thinks it wouldn't be CF...he has only seen my child twice. They mentioned the mass of paperwork in his file but I wonder if he actually READ any of it. I am just at wit's end. I can't even work a normal work week because every couple of weeks it is something.

 

[tabacue]

Thanks - It struck a nerve with me too - especially the lady in the lab. I don't know why the immunologist thinks it wouldn't be CF...he has only seen my child twice. They mentioned the mass of paperwork in his file but I wonder if he actually READ any of it. I am just at wit's end. I can't even work a normal work week because every couple of weeks it is something.

 

[tabacue]

Thanks - It struck a nerve with me too - especially the lady in the lab. I don't know why the immunologist thinks it wouldn't be CF...he has only seen my child twice. They mentioned the mass of paperwork in his file but I wonder if he actually READ any of it. I am just at wit's end. I can't even work a normal work week because every couple of weeks it is something.
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