Should he be tested again?

pepperderr · Mar 19, 2009

Ok. I have a few more questions if you don't mind. How long does it take to get the results back?

If it was a lack of enzymes that is causing him not to gain weight, wouldn't that also cause the stool problems you all talk about with CF? At one point I would have definitely said my older son had the stool issues but as I said before, they tested his stools although I am not really sure what they tested it for. It has since gone away. But then again, I don't look at his poop all the time either LOL. I do check my 4yo because I wipe his butt sometimes and usually his is only somewhat formed but still I wouldn't say it floats or is oily. I am not sure what bulky stool is.

You said about going to a CF clinic. The hospital my DS sees the GI doctor at is listed as a CF clinic (Geisinger Medical Center). The doctor that my other son sees for his asthma is Dr. Perez who is in charge of the CF clinic. So wouldn't that mean I can just have the hospital do the bloodwork in the lab as usual or might there be some kind of separate lab for CF stuff or something? I know when I call they always have a recording asking if you want to talk to the head of the CF clinic or the asthma doctor.

Is it common for people with CF to start coughing just if you tickle them or make them laugh? My son with asthma has always been like that but the 4yo is starting that too now. I am wondering if I should bother giving him cough meds to see if it goes away for good or not because the cough is just off and on thru the day, not like when you have a cold and feel miserible and cough all day long or like my son that has the asthma coughed 24/7 including all night long.

I don't think I will have any trouble getting his GI doctor to do any test I request. I know the other month he actually had them do some tumor marker test to make sure he didn't have cancer or something bad beause he has an abnormal bone lump on his collar bone. It all came back ok but when I said something to his regular pediatrician about it he just said "oh it's probably just an abnormal bone growth". I didn't like the fact that he said something was abnormal with my kid but he didn't want to check into it further especially with his history. I guess that is the problem with changing doctors. We had to swich due to insurance (we have to drive 40 mins away now) so this doctor only really knows what I told him about my son's past medical issues. He was not involved with any of it.

Thanks again everyone for responding!

pepperderr · Mar 19, 2009

Ok. I have a few more questions if you don't mind. How long does it take to get the results back?

If it was a lack of enzymes that is causing him not to gain weight, wouldn't that also cause the stool problems you all talk about with CF? At one point I would have definitely said my older son had the stool issues but as I said before, they tested his stools although I am not really sure what they tested it for. It has since gone away. But then again, I don't look at his poop all the time either LOL. I do check my 4yo because I wipe his butt sometimes and usually his is only somewhat formed but still I wouldn't say it floats or is oily. I am not sure what bulky stool is.

You said about going to a CF clinic. The hospital my DS sees the GI doctor at is listed as a CF clinic (Geisinger Medical Center). The doctor that my other son sees for his asthma is Dr. Perez who is in charge of the CF clinic. So wouldn't that mean I can just have the hospital do the bloodwork in the lab as usual or might there be some kind of separate lab for CF stuff or something? I know when I call they always have a recording asking if you want to talk to the head of the CF clinic or the asthma doctor.

Is it common for people with CF to start coughing just if you tickle them or make them laugh? My son with asthma has always been like that but the 4yo is starting that too now. I am wondering if I should bother giving him cough meds to see if it goes away for good or not because the cough is just off and on thru the day, not like when you have a cold and feel miserible and cough all day long or like my son that has the asthma coughed 24/7 including all night long.

I don't think I will have any trouble getting his GI doctor to do any test I request. I know the other month he actually had them do some tumor marker test to make sure he didn't have cancer or something bad beause he has an abnormal bone lump on his collar bone. It all came back ok but when I said something to his regular pediatrician about it he just said "oh it's probably just an abnormal bone growth". I didn't like the fact that he said something was abnormal with my kid but he didn't want to check into it further especially with his history. I guess that is the problem with changing doctors. We had to swich due to insurance (we have to drive 40 mins away now) so this doctor only really knows what I told him about my son's past medical issues. He was not involved with any of it.

Thanks again everyone for responding!

pepperderr · Mar 19, 2009

Ok. I have a few more questions if you don't mind. How long does it take to get the results back?

If it was a lack of enzymes that is causing him not to gain weight, wouldn't that also cause the stool problems you all talk about with CF? At one point I would have definitely said my older son had the stool issues but as I said before, they tested his stools although I am not really sure what they tested it for. It has since gone away. But then again, I don't look at his poop all the time either LOL. I do check my 4yo because I wipe his butt sometimes and usually his is only somewhat formed but still I wouldn't say it floats or is oily. I am not sure what bulky stool is.

You said about going to a CF clinic. The hospital my DS sees the GI doctor at is listed as a CF clinic (Geisinger Medical Center). The doctor that my other son sees for his asthma is Dr. Perez who is in charge of the CF clinic. So wouldn't that mean I can just have the hospital do the bloodwork in the lab as usual or might there be some kind of separate lab for CF stuff or something? I know when I call they always have a recording asking if you want to talk to the head of the CF clinic or the asthma doctor.

Is it common for people with CF to start coughing just if you tickle them or make them laugh? My son with asthma has always been like that but the 4yo is starting that too now. I am wondering if I should bother giving him cough meds to see if it goes away for good or not because the cough is just off and on thru the day, not like when you have a cold and feel miserible and cough all day long or like my son that has the asthma coughed 24/7 including all night long.

I don't think I will have any trouble getting his GI doctor to do any test I request. I know the other month he actually had them do some tumor marker test to make sure he didn't have cancer or something bad beause he has an abnormal bone lump on his collar bone. It all came back ok but when I said something to his regular pediatrician about it he just said "oh it's probably just an abnormal bone growth". I didn't like the fact that he said something was abnormal with my kid but he didn't want to check into it further especially with his history. I guess that is the problem with changing doctors. We had to swich due to insurance (we have to drive 40 mins away now) so this doctor only really knows what I told him about my son's past medical issues. He was not involved with any of it.

Thanks again everyone for responding!

pepperderr · Mar 19, 2009

Ok. I have a few more questions if you don't mind. How long does it take to get the results back?

If it was a lack of enzymes that is causing him not to gain weight, wouldn't that also cause the stool problems you all talk about with CF? At one point I would have definitely said my older son had the stool issues but as I said before, they tested his stools although I am not really sure what they tested it for. It has since gone away. But then again, I don't look at his poop all the time either LOL. I do check my 4yo because I wipe his butt sometimes and usually his is only somewhat formed but still I wouldn't say it floats or is oily. I am not sure what bulky stool is.

You said about going to a CF clinic. The hospital my DS sees the GI doctor at is listed as a CF clinic (Geisinger Medical Center). The doctor that my other son sees for his asthma is Dr. Perez who is in charge of the CF clinic. So wouldn't that mean I can just have the hospital do the bloodwork in the lab as usual or might there be some kind of separate lab for CF stuff or something? I know when I call they always have a recording asking if you want to talk to the head of the CF clinic or the asthma doctor.

Is it common for people with CF to start coughing just if you tickle them or make them laugh? My son with asthma has always been like that but the 4yo is starting that too now. I am wondering if I should bother giving him cough meds to see if it goes away for good or not because the cough is just off and on thru the day, not like when you have a cold and feel miserible and cough all day long or like my son that has the asthma coughed 24/7 including all night long.

I don't think I will have any trouble getting his GI doctor to do any test I request. I know the other month he actually had them do some tumor marker test to make sure he didn't have cancer or something bad beause he has an abnormal bone lump on his collar bone. It all came back ok but when I said something to his regular pediatrician about it he just said "oh it's probably just an abnormal bone growth". I didn't like the fact that he said something was abnormal with my kid but he didn't want to check into it further especially with his history. I guess that is the problem with changing doctors. We had to swich due to insurance (we have to drive 40 mins away now) so this doctor only really knows what I told him about my son's past medical issues. He was not involved with any of it.

Thanks again everyone for responding!

pepperderr · Mar 19, 2009

Ok. I have a few more questions if you don't mind. How long does it take to get the results back?
 
 If it was a lack of enzymes that is causing him not to gain weight, wouldn't that also cause the stool problems you all talk about with CF? At one point I would have definitely said my older son had the stool issues but as I said before, they tested his stools although I am not really sure what they tested it for. It has since gone away. But then again, I don't look at his poop all the time either LOL. I do check my 4yo because I wipe his butt sometimes and usually his is only somewhat formed but still I wouldn't say it floats or is oily. I am not sure what bulky stool is.
 
 You said about going to a CF clinic. The hospital my DS sees the GI doctor at is listed as a CF clinic (Geisinger Medical Center). The doctor that my other son sees for his asthma is Dr. Perez who is in charge of the CF clinic. So wouldn't that mean I can just have the hospital do the bloodwork in the lab as usual or might there be some kind of separate lab for CF stuff or something? I know when I call they always have a recording asking if you want to talk to the head of the CF clinic or the asthma doctor.
 
 Is it common for people with CF to start coughing just if you tickle them or make them laugh? My son with asthma has always been like that but the 4yo is starting that too now. I am wondering if I should bother giving him cough meds to see if it goes away for good or not because the cough is just off and on thru the day, not like when you have a cold and feel miserible and cough all day long or like my son that has the asthma coughed 24/7 including all night long.
 
 I don't think I will have any trouble getting his GI doctor to do any test I request. I know the other month he actually had them do some tumor marker test to make sure he didn't have cancer or something bad beause he has an abnormal bone lump on his collar bone. It all came back ok but when I said something to his regular pediatrician about it he just said "oh it's probably just an abnormal bone growth". I didn't like the fact that he said something was abnormal with my kid but he didn't want to check into it further especially with his history. I guess that is the problem with changing doctors. We had to swich due to insurance (we have to drive 40 mins away now) so this doctor only really knows what I told him about my son's past medical issues. He was not involved with any of it.
 
 Thanks again everyone for responding!

Jeana · Mar 19, 2009

I'm actually glad you asked the question, because I just got my results for my son's metabolic infant screening and they said he did not have CF, but then qualified it with the fact that the test is not always 100% accurate and that if I should see any symptoms in Alex that we should get more testing done in the future.

Jeana · Mar 19, 2009

I'm actually glad you asked the question, because I just got my results for my son's metabolic infant screening and they said he did not have CF, but then qualified it with the fact that the test is not always 100% accurate and that if I should see any symptoms in Alex that we should get more testing done in the future.

Jeana · Mar 19, 2009

I'm actually glad you asked the question, because I just got my results for my son's metabolic infant screening and they said he did not have CF, but then qualified it with the fact that the test is not always 100% accurate and that if I should see any symptoms in Alex that we should get more testing done in the future.

Jeana · Mar 19, 2009

I'm actually glad you asked the question, because I just got my results for my son's metabolic infant screening and they said he did not have CF, but then qualified it with the fact that the test is not always 100% accurate and that if I should see any symptoms in Alex that we should get more testing done in the future.

Jeana · Mar 19, 2009

I'm actually glad you asked the question, because I just got my results for my son's metabolic infant screening and they said he did not have CF, but then qualified it with the fact that the test is not always 100% accurate and that if I should see any symptoms in Alex that we should get more testing done in the future.

JORDYSMOM · Mar 19, 2009

The results on the genetic test can take weeks. Usually, they start testing for the most common genes, then move on to the next "group" of genes until they either cover all known genes, or find two. Insurance companies have a lot to do with how many they test for, because they want to pay out the least amount of money.

Yes, lack of enzymes will cause the stool problems, because some patient's bodies cannot process fats properly, and they are not absorbed.

Since you are going to a CF clinic, I'm surprised they haven't done the genetic test. Since you feel comfortable that your GI doc will run any test you request, I'd request it right away. Be sure and tell them you want them to check for all known mutations.

Asthma can cause the coughing spells you mentioned, and so can CF. My son has an asthma component with his CF. I have ashtma, and I cough badly when I play around or after I put in my 30 minutes on the treadmill.

Let us know how it goes.

Stacey

JORDYSMOM · Mar 19, 2009

The results on the genetic test can take weeks. Usually, they start testing for the most common genes, then move on to the next "group" of genes until they either cover all known genes, or find two. Insurance companies have a lot to do with how many they test for, because they want to pay out the least amount of money.

Yes, lack of enzymes will cause the stool problems, because some patient's bodies cannot process fats properly, and they are not absorbed.

Since you are going to a CF clinic, I'm surprised they haven't done the genetic test. Since you feel comfortable that your GI doc will run any test you request, I'd request it right away. Be sure and tell them you want them to check for all known mutations.

Asthma can cause the coughing spells you mentioned, and so can CF. My son has an asthma component with his CF. I have ashtma, and I cough badly when I play around or after I put in my 30 minutes on the treadmill.

Let us know how it goes.

Stacey

JORDYSMOM · Mar 19, 2009

The results on the genetic test can take weeks. Usually, they start testing for the most common genes, then move on to the next "group" of genes until they either cover all known genes, or find two. Insurance companies have a lot to do with how many they test for, because they want to pay out the least amount of money.

Yes, lack of enzymes will cause the stool problems, because some patient's bodies cannot process fats properly, and they are not absorbed.

Since you are going to a CF clinic, I'm surprised they haven't done the genetic test. Since you feel comfortable that your GI doc will run any test you request, I'd request it right away. Be sure and tell them you want them to check for all known mutations.

Asthma can cause the coughing spells you mentioned, and so can CF. My son has an asthma component with his CF. I have ashtma, and I cough badly when I play around or after I put in my 30 minutes on the treadmill.

Let us know how it goes.

Stacey

JORDYSMOM · Mar 19, 2009

The results on the genetic test can take weeks. Usually, they start testing for the most common genes, then move on to the next "group" of genes until they either cover all known genes, or find two. Insurance companies have a lot to do with how many they test for, because they want to pay out the least amount of money.

Yes, lack of enzymes will cause the stool problems, because some patient's bodies cannot process fats properly, and they are not absorbed.

Since you are going to a CF clinic, I'm surprised they haven't done the genetic test. Since you feel comfortable that your GI doc will run any test you request, I'd request it right away. Be sure and tell them you want them to check for all known mutations.

Asthma can cause the coughing spells you mentioned, and so can CF. My son has an asthma component with his CF. I have ashtma, and I cough badly when I play around or after I put in my 30 minutes on the treadmill.

Let us know how it goes.

Stacey

JORDYSMOM · Mar 19, 2009

The results on the genetic test can take weeks. Usually, they start testing for the most common genes, then move on to the next "group" of genes until they either cover all known genes, or find two. Insurance companies have a lot to do with how many they test for, because they want to pay out the least amount of money.
 
 Yes, lack of enzymes will cause the stool problems, because some patient's bodies cannot process fats properly, and they are not absorbed.
 
 Since you are going to a CF clinic, I'm surprised they haven't done the genetic test. Since you feel comfortable that your GI doc will run any test you request, I'd request it right away. Be sure and tell them you want them to check for all known mutations.
 
 Asthma can cause the coughing spells you mentioned, and so can CF. My son has an asthma component with his CF. I have ashtma, and I cough badly when I play around or after I put in my 30 minutes on the treadmill.
 
 Let us know how it goes.
 
 Stacey

pepperderr · Mar 20, 2009

I called the medical assistance today and they said they don't cover the genetic testing so I am just hoping the insurance will. They would not cover for him to see a feeding team even though he is failure to thive, but they would have covered it if he was diabetic. How expensive is it if the insurance doesn't pay. The reason I am thinking they might say they won't was because the sweat test was negative.

PEPPERDERR

pepperderr · Mar 20, 2009

I called the medical assistance today and they said they don't cover the genetic testing so I am just hoping the insurance will. They would not cover for him to see a feeding team even though he is failure to thive, but they would have covered it if he was diabetic. How expensive is it if the insurance doesn't pay. The reason I am thinking they might say they won't was because the sweat test was negative.

PEPPERDERR

pepperderr · Mar 20, 2009

I called the medical assistance today and they said they don't cover the genetic testing so I am just hoping the insurance will. They would not cover for him to see a feeding team even though he is failure to thive, but they would have covered it if he was diabetic. How expensive is it if the insurance doesn't pay. The reason I am thinking they might say they won't was because the sweat test was negative.

PEPPERDERR

pepperderr · Mar 20, 2009

I called the medical assistance today and they said they don't cover the genetic testing so I am just hoping the insurance will. They would not cover for him to see a feeding team even though he is failure to thive, but they would have covered it if he was diabetic. How expensive is it if the insurance doesn't pay. The reason I am thinking they might say they won't was because the sweat test was negative.

PEPPERDERR

pepperderr · Mar 20, 2009

I called the medical assistance today and they said they don't cover the genetic testing so I am just hoping the insurance will. They would not cover for him to see a feeding team even though he is failure to thive, but they would have covered it if he was diabetic. How expensive is it if the insurance doesn't pay. The reason I am thinking they might say they won't was because the sweat test was negative.
 
 PEPPERDERR

Should he be tested again?

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