Going in for TB testing

E

Eden

New member
Thanks to everyone who has helped me through this battle, I am hoping that we are going to start getting some real answers. DS met with the pediatric pulmonologist who is incredible. He is determined to find out what is going on with DS. He asked all kinds of questions, about his cough, his asthma, his digestive issues, his weight loss, family medical history, etc. He read over his medical records thoroughly and asked questions. He asked if DS had a chest x-ray and I told him he did and the dr. said it appeared normal, he ordered a new one anyway. He asked what the GI dr. told me and I told him about the "watch and see" approach, which he was not happy with (they are both in the children's hospital at UVA so basically work together). He asked about the sweat test results, I told him they were negative and he didn't seem completely satisfied. He is big into clinical research and is currently running a few government funded research studies, so hopefully this means he tries to stay current and is looking for things that are not in the text books. I feel very encouraged.

He took blood to check for a bunch of allergies, including indoor like dogs, cats, dust mites, etc. They all came back negative. He called me with the chest x-ray results and said he saw a few things that concerned him, possibly signs of an old infection or some damage. Of course this is terrible news, but at the same time I am so happy we found something to start looking into. He wants to rule out TB (I hope it's not, seems nearly impossible) so we go in for that test today and will have DS checked for the results on Wednesday or Thursday. In the meantime, DS continues to cough, even though he now has Singulair added to his asthma medications. His bm's are unformed and floating again and constantly changing color (dark brown, green, orange, yellow). Since his 1st appt. with the GI specialist on July 1st, he has lost just over 2 pounds, but grew an inch? He is completely off the charts now.

Just wondering if anyone else had issues with chest x-ray's showing "something" and if anyone else's dr. ever suggested TB testing?
 
E

Eden

New member
Thanks to everyone who has helped me through this battle, I am hoping that we are going to start getting some real answers. DS met with the pediatric pulmonologist who is incredible. He is determined to find out what is going on with DS. He asked all kinds of questions, about his cough, his asthma, his digestive issues, his weight loss, family medical history, etc. He read over his medical records thoroughly and asked questions. He asked if DS had a chest x-ray and I told him he did and the dr. said it appeared normal, he ordered a new one anyway. He asked what the GI dr. told me and I told him about the "watch and see" approach, which he was not happy with (they are both in the children's hospital at UVA so basically work together). He asked about the sweat test results, I told him they were negative and he didn't seem completely satisfied. He is big into clinical research and is currently running a few government funded research studies, so hopefully this means he tries to stay current and is looking for things that are not in the text books. I feel very encouraged.

He took blood to check for a bunch of allergies, including indoor like dogs, cats, dust mites, etc. They all came back negative. He called me with the chest x-ray results and said he saw a few things that concerned him, possibly signs of an old infection or some damage. Of course this is terrible news, but at the same time I am so happy we found something to start looking into. He wants to rule out TB (I hope it's not, seems nearly impossible) so we go in for that test today and will have DS checked for the results on Wednesday or Thursday. In the meantime, DS continues to cough, even though he now has Singulair added to his asthma medications. His bm's are unformed and floating again and constantly changing color (dark brown, green, orange, yellow). Since his 1st appt. with the GI specialist on July 1st, he has lost just over 2 pounds, but grew an inch? He is completely off the charts now.

Just wondering if anyone else had issues with chest x-ray's showing "something" and if anyone else's dr. ever suggested TB testing?
 
E

Eden

New member
Thanks to everyone who has helped me through this battle, I am hoping that we are going to start getting some real answers. DS met with the pediatric pulmonologist who is incredible. He is determined to find out what is going on with DS. He asked all kinds of questions, about his cough, his asthma, his digestive issues, his weight loss, family medical history, etc. He read over his medical records thoroughly and asked questions. He asked if DS had a chest x-ray and I told him he did and the dr. said it appeared normal, he ordered a new one anyway. He asked what the GI dr. told me and I told him about the "watch and see" approach, which he was not happy with (they are both in the children's hospital at UVA so basically work together). He asked about the sweat test results, I told him they were negative and he didn't seem completely satisfied. He is big into clinical research and is currently running a few government funded research studies, so hopefully this means he tries to stay current and is looking for things that are not in the text books. I feel very encouraged.
<br />
<br />He took blood to check for a bunch of allergies, including indoor like dogs, cats, dust mites, etc. They all came back negative. He called me with the chest x-ray results and said he saw a few things that concerned him, possibly signs of an old infection or some damage. Of course this is terrible news, but at the same time I am so happy we found something to start looking into. He wants to rule out TB (I hope it's not, seems nearly impossible) so we go in for that test today and will have DS checked for the results on Wednesday or Thursday. In the meantime, DS continues to cough, even though he now has Singulair added to his asthma medications. His bm's are unformed and floating again and constantly changing color (dark brown, green, orange, yellow). Since his 1st appt. with the GI specialist on July 1st, he has lost just over 2 pounds, but grew an inch? He is completely off the charts now.
<br />
<br />Just wondering if anyone else had issues with chest x-ray's showing "something" and if anyone else's dr. ever suggested TB testing?
 
H

hmw

New member
Yes, Emily's chest xrays have shown a few things ...her latest 'healthy' xray shows mild signs of damage caused by her cf. This is very common, even among children, with CF. TB testing has never been suggested for us. Hearing that her latest xray showed damage was difficult (she's only 9 and we do so much to try and keep her healthy) but I try to remind myself how much worse it likely would be if we weren't doing everything we are.

Allergy testing was a good idea, as untreated allergies can cause many symptoms. It was good to rule that out. I am glad he is not content with the GI's wait and see approach. I am not happy with that either- having him fall ever farther off the growth charts is very concerning. The more ground they lose, it becomes increasingly difficult to make it up. Remember- in trying to recoup lost ground, not only do they need to regain lost weight, but also put on the amount that a child their age typically gains in that period of time (otherwise they continue to fall behind.) It can quickly become a very difficult, frustrating battle- been there, done that for several years with my daughter.

Given Celiac disease and a couple other things have also been ruled out... if it's not been done yet, I would contnue to push- insist! on genetic sequencing for your child. Ask for the Ambry Amplified w/deletions & duplications. He's been so thorough with everything else- if he resists ask him- 'This is just a simple blood test, with how thorough you are being with everything else, why are you fighting me on this? Isn't it better to pursue it with as much effort as all these other diagnoses?' I also cannot remember- has he had a fecal fat or fecal elastase test done? If he doesn't eat much fat, the elastase test might be better, but both could be helpful (elastase is more specific to CF, though.)

Hoping you get the answers you need SOON and glad you like the dr that you are seeing. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
H

hmw

New member
Yes, Emily's chest xrays have shown a few things ...her latest 'healthy' xray shows mild signs of damage caused by her cf. This is very common, even among children, with CF. TB testing has never been suggested for us. Hearing that her latest xray showed damage was difficult (she's only 9 and we do so much to try and keep her healthy) but I try to remind myself how much worse it likely would be if we weren't doing everything we are.

Allergy testing was a good idea, as untreated allergies can cause many symptoms. It was good to rule that out. I am glad he is not content with the GI's wait and see approach. I am not happy with that either- having him fall ever farther off the growth charts is very concerning. The more ground they lose, it becomes increasingly difficult to make it up. Remember- in trying to recoup lost ground, not only do they need to regain lost weight, but also put on the amount that a child their age typically gains in that period of time (otherwise they continue to fall behind.) It can quickly become a very difficult, frustrating battle- been there, done that for several years with my daughter.

Given Celiac disease and a couple other things have also been ruled out... if it's not been done yet, I would contnue to push- insist! on genetic sequencing for your child. Ask for the Ambry Amplified w/deletions & duplications. He's been so thorough with everything else- if he resists ask him- 'This is just a simple blood test, with how thorough you are being with everything else, why are you fighting me on this? Isn't it better to pursue it with as much effort as all these other diagnoses?' I also cannot remember- has he had a fecal fat or fecal elastase test done? If he doesn't eat much fat, the elastase test might be better, but both could be helpful (elastase is more specific to CF, though.)

Hoping you get the answers you need SOON and glad you like the dr that you are seeing. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
H

hmw

New member
Yes, Emily's chest xrays have shown a few things ...her latest 'healthy' xray shows mild signs of damage caused by her cf. This is very common, even among children, with CF. TB testing has never been suggested for us. Hearing that her latest xray showed damage was difficult (she's only 9 and we do so much to try and keep her healthy) but I try to remind myself how much worse it likely would be if we weren't doing everything we are.
<br />
<br />Allergy testing was a good idea, as untreated allergies can cause many symptoms. It was good to rule that out. I am glad he is not content with the GI's wait and see approach. I am not happy with that either- having him fall ever farther off the growth charts is very concerning. The more ground they lose, it becomes increasingly difficult to make it up. Remember- in trying to recoup lost ground, not only do they need to regain lost weight, but also put on the amount that a child their age typically gains in that period of time (otherwise they continue to fall behind.) It can quickly become a very difficult, frustrating battle- been there, done that for several years with my daughter.
<br />
<br />Given Celiac disease and a couple other things have also been ruled out... if it's not been done yet, I would contnue to push- insist! on genetic sequencing for your child. Ask for the Ambry Amplified w/deletions & duplications. He's been so thorough with everything else- if he resists ask him- 'This is just a simple blood test, with how thorough you are being with everything else, why are you fighting me on this? Isn't it better to pursue it with as much effort as all these other diagnoses?' I also cannot remember- has he had a fecal fat or fecal elastase test done? If he doesn't eat much fat, the elastase test might be better, but both could be helpful (elastase is more specific to CF, though.)
<br />
<br />Hoping you get the answers you need SOON and glad you like the dr that you are seeing. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
K

kaylinsmom

Member
When my 7 year old was hospitalized last year for H1N1 and pneumonia, she had an xray done and the next day the doctor came in and said that he found something that they were unsure about. They ordered all of these test (the TB test was one of them) and ordered a ct scan to help them see these "masses" better. We went down for the scan and the next morning when we were waiting to have all of the tests done, the doc came in and said we didnt have to do any of the tests now because the ct scan showed it was swollen lymph nodes in her chest?? We were relieved! But now, 10 months later the doctors have found more swollen lymph nodes and we go in 2 weeks to have one removed for testing. Lymphoma runs in my family. Hope you get some answers soon. I know how frustrating it is to see your child sick without knowing what is going on. Erin
 
K

kaylinsmom

Member
When my 7 year old was hospitalized last year for H1N1 and pneumonia, she had an xray done and the next day the doctor came in and said that he found something that they were unsure about. They ordered all of these test (the TB test was one of them) and ordered a ct scan to help them see these "masses" better. We went down for the scan and the next morning when we were waiting to have all of the tests done, the doc came in and said we didnt have to do any of the tests now because the ct scan showed it was swollen lymph nodes in her chest?? We were relieved! But now, 10 months later the doctors have found more swollen lymph nodes and we go in 2 weeks to have one removed for testing. Lymphoma runs in my family. Hope you get some answers soon. I know how frustrating it is to see your child sick without knowing what is going on. Erin
 
K

kaylinsmom

Member
When my 7 year old was hospitalized last year for H1N1 and pneumonia, she had an xray done and the next day the doctor came in and said that he found something that they were unsure about. They ordered all of these test (the TB test was one of them) and ordered a ct scan to help them see these "masses" better. We went down for the scan and the next morning when we were waiting to have all of the tests done, the doc came in and said we didnt have to do any of the tests now because the ct scan showed it was swollen lymph nodes in her chest?? We were relieved! But now, 10 months later the doctors have found more swollen lymph nodes and we go in 2 weeks to have one removed for testing. Lymphoma runs in my family. Hope you get some answers soon. I know how frustrating it is to see your child sick without knowing what is going on. Erin
 
M

Melissa75

Administrator
Eden,
Damage on a lung x-ray, particularly if it follows a certain pattern, can indicate a past or current infection. For example, upper lobes is often where TB hits, right middle lobe and lingula are indicative of non-TB mycobacteria.
Although TB is uncommon these days, it is worth ruling out because it is non-CF cause of lung damage. Bronchiectasis (lung damage) from a past or current TB infection would mean a lifetime of chest physical therapy and a predisposition to additional lung infections.
Sounds a bit similar to CF, hence the reason why I hang out here (bronchiectasis w/o CF). Nonetheless it can be very different from CF lung disease in that the damage can/might remain static i.e. little to no progression.
TB tests are cheap, another reason why your dr ordered it. Full genetic sequencing is not. I would still push for the latter. Has your son had sputum cultures? Also how negative was his sweat test?
Best wishes with everything.
 
M

Melissa75

Administrator
Eden,
Damage on a lung x-ray, particularly if it follows a certain pattern, can indicate a past or current infection. For example, upper lobes is often where TB hits, right middle lobe and lingula are indicative of non-TB mycobacteria.
Although TB is uncommon these days, it is worth ruling out because it is non-CF cause of lung damage. Bronchiectasis (lung damage) from a past or current TB infection would mean a lifetime of chest physical therapy and a predisposition to additional lung infections.
Sounds a bit similar to CF, hence the reason why I hang out here (bronchiectasis w/o CF). Nonetheless it can be very different from CF lung disease in that the damage can/might remain static i.e. little to no progression.
TB tests are cheap, another reason why your dr ordered it. Full genetic sequencing is not. I would still push for the latter. Has your son had sputum cultures? Also how negative was his sweat test?
Best wishes with everything.
 
M

Melissa75

Administrator
Eden,
<br />Damage on a lung x-ray, particularly if it follows a certain pattern, can indicate a past or current infection. For example, upper lobes is often where TB hits, right middle lobe and lingula are indicative of non-TB mycobacteria.
<br />Although TB is uncommon these days, it is worth ruling out because it is non-CF cause of lung damage. Bronchiectasis (lung damage) from a past or current TB infection would mean a lifetime of chest physical therapy and a predisposition to additional lung infections.
<br />Sounds a bit similar to CF, hence the reason why I hang out here (bronchiectasis w/o CF). Nonetheless it can be very different from CF lung disease in that the damage can/might remain static i.e. little to no progression.
<br />TB tests are cheap, another reason why your dr ordered it. Full genetic sequencing is not. I would still push for the latter. Has your son had sputum cultures? Also how negative was his sweat test?
<br />Best wishes with everything.
 
E

Eden

New member
Thank you all for responding. Today is the day for DS's arm to be checked for TB, and there is still nothing there, phew! Of course that doesn't explain what was seen on the chest x-ray, which we have to talk to the pulmo about.

Harriett, thanks for the information, you are always so helpful. I'm so sorry to hear about Emily's lung damage. I noticed that she was just diagnosed about 2 years ago, so hopefully now with all the treatments, further lung damage can be kept at bay. I'm kind of disappointed that the allergy test didn't show anything, that may have been an easy fix depending on how bad the allergy was. You are right, he will now need to catch up and beyond on his weight. He picks at his food most of the time and says he's full or his stomach hurts. Every now and then he'll eat like crazy, but not often. I offer him food about every 15 minutes when I'm with him and stuff his lunchbox full of foods I know he likes, but most of it comes back home. His regular ped. took a stool sample and I thought they were checking fat levels, but apparently only told me that he doesn't have any parasites. I should probably request the fecal fat and elastase tests.

DS's sweat test was 10 on one arm and inconclusive on the other b/c of not enough sweat. The one arm was so incredibly low that I think most of the doc's are kind of ruling out CF. This would of course be great, but I'm concerned that if we don't figure out what is going on, his weight will continue to fall further off the charts and possibly incur further lung damage. I'm going to ask the pulmo about the genetic testing. Melissa, I had thought about the sputum cultures and then always seem to forget, thanks, I will definitely bring that up too.
 
E

Eden

New member
Thank you all for responding. Today is the day for DS's arm to be checked for TB, and there is still nothing there, phew! Of course that doesn't explain what was seen on the chest x-ray, which we have to talk to the pulmo about.

Harriett, thanks for the information, you are always so helpful. I'm so sorry to hear about Emily's lung damage. I noticed that she was just diagnosed about 2 years ago, so hopefully now with all the treatments, further lung damage can be kept at bay. I'm kind of disappointed that the allergy test didn't show anything, that may have been an easy fix depending on how bad the allergy was. You are right, he will now need to catch up and beyond on his weight. He picks at his food most of the time and says he's full or his stomach hurts. Every now and then he'll eat like crazy, but not often. I offer him food about every 15 minutes when I'm with him and stuff his lunchbox full of foods I know he likes, but most of it comes back home. His regular ped. took a stool sample and I thought they were checking fat levels, but apparently only told me that he doesn't have any parasites. I should probably request the fecal fat and elastase tests.

DS's sweat test was 10 on one arm and inconclusive on the other b/c of not enough sweat. The one arm was so incredibly low that I think most of the doc's are kind of ruling out CF. This would of course be great, but I'm concerned that if we don't figure out what is going on, his weight will continue to fall further off the charts and possibly incur further lung damage. I'm going to ask the pulmo about the genetic testing. Melissa, I had thought about the sputum cultures and then always seem to forget, thanks, I will definitely bring that up too.
 
E

Eden

New member
Thank you all for responding. Today is the day for DS's arm to be checked for TB, and there is still nothing there, phew! Of course that doesn't explain what was seen on the chest x-ray, which we have to talk to the pulmo about.
<br />
<br />Harriett, thanks for the information, you are always so helpful. I'm so sorry to hear about Emily's lung damage. I noticed that she was just diagnosed about 2 years ago, so hopefully now with all the treatments, further lung damage can be kept at bay. I'm kind of disappointed that the allergy test didn't show anything, that may have been an easy fix depending on how bad the allergy was. You are right, he will now need to catch up and beyond on his weight. He picks at his food most of the time and says he's full or his stomach hurts. Every now and then he'll eat like crazy, but not often. I offer him food about every 15 minutes when I'm with him and stuff his lunchbox full of foods I know he likes, but most of it comes back home. His regular ped. took a stool sample and I thought they were checking fat levels, but apparently only told me that he doesn't have any parasites. I should probably request the fecal fat and elastase tests.
<br />
<br />DS's sweat test was 10 on one arm and inconclusive on the other b/c of not enough sweat. The one arm was so incredibly low that I think most of the doc's are kind of ruling out CF. This would of course be great, but I'm concerned that if we don't figure out what is going on, his weight will continue to fall further off the charts and possibly incur further lung damage. I'm going to ask the pulmo about the genetic testing. Melissa, I had thought about the sputum cultures and then always seem to forget, thanks, I will definitely bring that up too.
 
R

Ratatosk

Administrator
Staff member
IMO you need to write down all these questions down and have the list available when you're at the clinic. So you don't get sidetracked. Several of us have mentioned the fecal fat test, genetic testing, throat/sputum cultures...
Otherwise you have to keep going back to the clinc AND paying for an office call each time.
 
R

Ratatosk

Administrator
Staff member
IMO you need to write down all these questions down and have the list available when you're at the clinic. So you don't get sidetracked. Several of us have mentioned the fecal fat test, genetic testing, throat/sputum cultures...
Otherwise you have to keep going back to the clinc AND paying for an office call each time.
 
R

Ratatosk

Administrator
Staff member
IMO you need to write down all these questions down and have the list available when you're at the clinic. So you don't get sidetracked. Several of us have mentioned the fecal fat test, genetic testing, throat/sputum cultures...
<br />Otherwise you have to keep going back to the clinc AND paying for an office call each time.
 
E

Eden

New member
Thanks Liza, I know you are right. I actually just made the list and put it in my purse. I'm hoping that the new pulmo will be the one that will listen. I know the docs are trying to rule out the stuff with cheaper tests first, which I understand, but it's not getting us anywhere. We are setting up a time to go back to the pulmo and I'm going to ask him for all three tests. It wasn't until I requested all of my son's past medical records that I noticed the stool sample was only checked for parasites! I swore they told me they were doing a fecal fat test. I gave up on the GI doctor, as he was no help. DS's ped. is a wonderful sweet lady and DS loves her, but she doesn't seem to have the necessary knowledge, so it's good she decided to recommend us to the specialists. Sorry I keep bugging you guys with all of this, I'm just so worried and I don't know who to talk to. My ex (DS's father) tells me that if I keep looking hard enough, eventually I'll find something, basically implying I should stop looking. Then he tells me how horrible DS's cough is after he has him for a weekend and asks what could be causing it in an accusatory manner. Sorry, just venting. Thanks again.
 
E

Eden

New member
Thanks Liza, I know you are right. I actually just made the list and put it in my purse. I'm hoping that the new pulmo will be the one that will listen. I know the docs are trying to rule out the stuff with cheaper tests first, which I understand, but it's not getting us anywhere. We are setting up a time to go back to the pulmo and I'm going to ask him for all three tests. It wasn't until I requested all of my son's past medical records that I noticed the stool sample was only checked for parasites! I swore they told me they were doing a fecal fat test. I gave up on the GI doctor, as he was no help. DS's ped. is a wonderful sweet lady and DS loves her, but she doesn't seem to have the necessary knowledge, so it's good she decided to recommend us to the specialists. Sorry I keep bugging you guys with all of this, I'm just so worried and I don't know who to talk to. My ex (DS's father) tells me that if I keep looking hard enough, eventually I'll find something, basically implying I should stop looking. Then he tells me how horrible DS's cough is after he has him for a weekend and asks what could be causing it in an accusatory manner. Sorry, just venting. Thanks again.
 
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