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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Going in for TB testing
- Thread starter Eden
- Start date
It's easy to get sidetracked during an appointment. Even when I've had a list in front of me, I've forgotten something and had to call back. Earlier this summer we were so busy talking about enzyme changes that we forgot to clarify changing to a different antibiotic.
And while it is nice to have a doctor with a good bedside manner, if they can't help you find answers, then IMO, it's time to move on. I originally LOVED the local GI doctor at the CF clinic, because he was so nice, but he always deferred to the head of the program who was the pulmonologist and it ended up being a waste of our time and theirs.
And most of us have stories to tell about unsupportive family members who seem to think we want our children to be sick when we're just looking for answers.
And while it is nice to have a doctor with a good bedside manner, if they can't help you find answers, then IMO, it's time to move on. I originally LOVED the local GI doctor at the CF clinic, because he was so nice, but he always deferred to the head of the program who was the pulmonologist and it ended up being a waste of our time and theirs.
And most of us have stories to tell about unsupportive family members who seem to think we want our children to be sick when we're just looking for answers.
It's easy to get sidetracked during an appointment. Even when I've had a list in front of me, I've forgotten something and had to call back. Earlier this summer we were so busy talking about enzyme changes that we forgot to clarify changing to a different antibiotic.
And while it is nice to have a doctor with a good bedside manner, if they can't help you find answers, then IMO, it's time to move on. I originally LOVED the local GI doctor at the CF clinic, because he was so nice, but he always deferred to the head of the program who was the pulmonologist and it ended up being a waste of our time and theirs.
And most of us have stories to tell about unsupportive family members who seem to think we want our children to be sick when we're just looking for answers.
And while it is nice to have a doctor with a good bedside manner, if they can't help you find answers, then IMO, it's time to move on. I originally LOVED the local GI doctor at the CF clinic, because he was so nice, but he always deferred to the head of the program who was the pulmonologist and it ended up being a waste of our time and theirs.
And most of us have stories to tell about unsupportive family members who seem to think we want our children to be sick when we're just looking for answers.
It's easy to get sidetracked during an appointment. Even when I've had a list in front of me, I've forgotten something and had to call back. Earlier this summer we were so busy talking about enzyme changes that we forgot to clarify changing to a different antibiotic.
<br />
<br />And while it is nice to have a doctor with a good bedside manner, if they can't help you find answers, then IMO, it's time to move on. I originally LOVED the local GI doctor at the CF clinic, because he was so nice, but he always deferred to the head of the program who was the pulmonologist and it ended up being a waste of our time and theirs.
<br />
<br />And most of us have stories to tell about unsupportive family members who seem to think we want our children to be sick when we're just looking for answers.
<br />
<br />And while it is nice to have a doctor with a good bedside manner, if they can't help you find answers, then IMO, it's time to move on. I originally LOVED the local GI doctor at the CF clinic, because he was so nice, but he always deferred to the head of the program who was the pulmonologist and it ended up being a waste of our time and theirs.
<br />
<br />And most of us have stories to tell about unsupportive family members who seem to think we want our children to be sick when we're just looking for answers.
Eden-
My heart goes out to you. I remember a while back you shared with me what you went through when your son was born - insurance issues, "relationship stuff" - and now you have another thing on your plate that will not get solved overnight. Doesn't it seem like life is a waiting game and none of us ever quite "arrive" in that place where all our "stuff" is in tucked away neatly. Surely life couldn't be that easy!
I don't know if you remember me, but I'm the one who's daughter has a lot of the same symptoms as your son. We, too, don't yet have a diagnosis, but at least insurance changed their mind and turned our appeal around and will cover her Ambry genetic test. Don't let anyone make you feel like if you go looking for trouble you'll find it anywhere, therefore it's imaginary. I've heard that before too, and I'm learning to trust my mother instinct. I believe that there WILL come a point where you and I feel like we have done EVERYTHING we can do and checked out every possibility and now it's time to quit and just accept, but until that point, we cannot, out of motherly love, stop looking. And if we get to that point where it's time to stop, with no answers, at least we can say we did everything we could for our precious children.
Please keep us updated.
My heart goes out to you. I remember a while back you shared with me what you went through when your son was born - insurance issues, "relationship stuff" - and now you have another thing on your plate that will not get solved overnight. Doesn't it seem like life is a waiting game and none of us ever quite "arrive" in that place where all our "stuff" is in tucked away neatly. Surely life couldn't be that easy!
I don't know if you remember me, but I'm the one who's daughter has a lot of the same symptoms as your son. We, too, don't yet have a diagnosis, but at least insurance changed their mind and turned our appeal around and will cover her Ambry genetic test. Don't let anyone make you feel like if you go looking for trouble you'll find it anywhere, therefore it's imaginary. I've heard that before too, and I'm learning to trust my mother instinct. I believe that there WILL come a point where you and I feel like we have done EVERYTHING we can do and checked out every possibility and now it's time to quit and just accept, but until that point, we cannot, out of motherly love, stop looking. And if we get to that point where it's time to stop, with no answers, at least we can say we did everything we could for our precious children.
Please keep us updated.
Eden-
My heart goes out to you. I remember a while back you shared with me what you went through when your son was born - insurance issues, "relationship stuff" - and now you have another thing on your plate that will not get solved overnight. Doesn't it seem like life is a waiting game and none of us ever quite "arrive" in that place where all our "stuff" is in tucked away neatly. Surely life couldn't be that easy!
I don't know if you remember me, but I'm the one who's daughter has a lot of the same symptoms as your son. We, too, don't yet have a diagnosis, but at least insurance changed their mind and turned our appeal around and will cover her Ambry genetic test. Don't let anyone make you feel like if you go looking for trouble you'll find it anywhere, therefore it's imaginary. I've heard that before too, and I'm learning to trust my mother instinct. I believe that there WILL come a point where you and I feel like we have done EVERYTHING we can do and checked out every possibility and now it's time to quit and just accept, but until that point, we cannot, out of motherly love, stop looking. And if we get to that point where it's time to stop, with no answers, at least we can say we did everything we could for our precious children.
Please keep us updated.
My heart goes out to you. I remember a while back you shared with me what you went through when your son was born - insurance issues, "relationship stuff" - and now you have another thing on your plate that will not get solved overnight. Doesn't it seem like life is a waiting game and none of us ever quite "arrive" in that place where all our "stuff" is in tucked away neatly. Surely life couldn't be that easy!
I don't know if you remember me, but I'm the one who's daughter has a lot of the same symptoms as your son. We, too, don't yet have a diagnosis, but at least insurance changed their mind and turned our appeal around and will cover her Ambry genetic test. Don't let anyone make you feel like if you go looking for trouble you'll find it anywhere, therefore it's imaginary. I've heard that before too, and I'm learning to trust my mother instinct. I believe that there WILL come a point where you and I feel like we have done EVERYTHING we can do and checked out every possibility and now it's time to quit and just accept, but until that point, we cannot, out of motherly love, stop looking. And if we get to that point where it's time to stop, with no answers, at least we can say we did everything we could for our precious children.
Please keep us updated.
Eden-
<br /> My heart goes out to you. I remember a while back you shared with me what you went through when your son was born - insurance issues, "relationship stuff" - and now you have another thing on your plate that will not get solved overnight. Doesn't it seem like life is a waiting game and none of us ever quite "arrive" in that place where all our "stuff" is in tucked away neatly. Surely life couldn't be that easy!
<br /> I don't know if you remember me, but I'm the one who's daughter has a lot of the same symptoms as your son. We, too, don't yet have a diagnosis, but at least insurance changed their mind and turned our appeal around and will cover her Ambry genetic test. Don't let anyone make you feel like if you go looking for trouble you'll find it anywhere, therefore it's imaginary. I've heard that before too, and I'm learning to trust my mother instinct. I believe that there WILL come a point where you and I feel like we have done EVERYTHING we can do and checked out every possibility and now it's time to quit and just accept, but until that point, we cannot, out of motherly love, stop looking. And if we get to that point where it's time to stop, with no answers, at least we can say we did everything we could for our precious children.
<br /> Please keep us updated.
<br /> My heart goes out to you. I remember a while back you shared with me what you went through when your son was born - insurance issues, "relationship stuff" - and now you have another thing on your plate that will not get solved overnight. Doesn't it seem like life is a waiting game and none of us ever quite "arrive" in that place where all our "stuff" is in tucked away neatly. Surely life couldn't be that easy!
<br /> I don't know if you remember me, but I'm the one who's daughter has a lot of the same symptoms as your son. We, too, don't yet have a diagnosis, but at least insurance changed their mind and turned our appeal around and will cover her Ambry genetic test. Don't let anyone make you feel like if you go looking for trouble you'll find it anywhere, therefore it's imaginary. I've heard that before too, and I'm learning to trust my mother instinct. I believe that there WILL come a point where you and I feel like we have done EVERYTHING we can do and checked out every possibility and now it's time to quit and just accept, but until that point, we cannot, out of motherly love, stop looking. And if we get to that point where it's time to stop, with no answers, at least we can say we did everything we could for our precious children.
<br /> Please keep us updated.
Transplantmommy
New member
I really have nothing to add and don't know if anyone has said this, but CF commonly mimics TB. I went to my CF hospital one time and was put in isolation becasue the ER doc thought that I had TB. MY CF doc was pissed when he went in there an heard that I was in isolation because he knew that I didn't have TB. That is the admission where I found out I needed a double lung and liver transplant. Not that admissions to the hospital are fun, but this one was not fun at all.
I don't know how your child was tested for CF (don't know if you metioned it) but sweat tests can show negative and then later be positive. My sweat test was negative when I was 3 months old but I continued to have problems and was tested again at 6 months and it was positive!
I don't know how your child was tested for CF (don't know if you metioned it) but sweat tests can show negative and then later be positive. My sweat test was negative when I was 3 months old but I continued to have problems and was tested again at 6 months and it was positive!
Transplantmommy
New member
I really have nothing to add and don't know if anyone has said this, but CF commonly mimics TB. I went to my CF hospital one time and was put in isolation becasue the ER doc thought that I had TB. MY CF doc was pissed when he went in there an heard that I was in isolation because he knew that I didn't have TB. That is the admission where I found out I needed a double lung and liver transplant. Not that admissions to the hospital are fun, but this one was not fun at all.
I don't know how your child was tested for CF (don't know if you metioned it) but sweat tests can show negative and then later be positive. My sweat test was negative when I was 3 months old but I continued to have problems and was tested again at 6 months and it was positive!
I don't know how your child was tested for CF (don't know if you metioned it) but sweat tests can show negative and then later be positive. My sweat test was negative when I was 3 months old but I continued to have problems and was tested again at 6 months and it was positive!
Transplantmommy
New member
I really have nothing to add and don't know if anyone has said this, but CF commonly mimics TB. I went to my CF hospital one time and was put in isolation becasue the ER doc thought that I had TB. MY CF doc was pissed when he went in there an heard that I was in isolation because he knew that I didn't have TB. That is the admission where I found out I needed a double lung and liver transplant. Not that admissions to the hospital are fun, but this one was not fun at all.
<br />
<br />I don't know how your child was tested for CF (don't know if you metioned it) but sweat tests can show negative and then later be positive. My sweat test was negative when I was 3 months old but I continued to have problems and was tested again at 6 months and it was positive!
<br />
<br />I don't know how your child was tested for CF (don't know if you metioned it) but sweat tests can show negative and then later be positive. My sweat test was negative when I was 3 months old but I continued to have problems and was tested again at 6 months and it was positive!