still waiting

W

worriedmom

Guest
It's been a while since I've posted, I've been trying to stay off the computer for my own mental health's sake. My now 3 year old was very sick over the winter and the doctors thought it could possibly be CF. Well, 2 sweat tests later, only 1 being successful, they collected 86 grams of sweat on the 2nd her number came back 32 on sodium and chloride 20( I think that was the order). Anyway, it was "normal". However, she still continues to have no weight gain after a 7 lb weight loss in the winter. She is maintaining but not gaining. Not only that, now they want to test her for pancreatic insufficiency because of other problems she is having. The doctor did say at one of our many appointments that he wanted to do the blood work up either way and now he is saying "no" because theywant to test for other possibilities. I am glad they are being so cautious, however, if there was ever a possibility they thought CF, I kind of want to know, from what I understand not all sweat tests are 100% accurate. I almost feel like we've hit a brick wall and now they are just grasping at straws looking for a diagnosis. It's very frustrating...any suggestions on what I should do??
 
W

worriedmom

Guest
It's been a while since I've posted, I've been trying to stay off the computer for my own mental health's sake. My now 3 year old was very sick over the winter and the doctors thought it could possibly be CF. Well, 2 sweat tests later, only 1 being successful, they collected 86 grams of sweat on the 2nd her number came back 32 on sodium and chloride 20( I think that was the order). Anyway, it was "normal". However, she still continues to have no weight gain after a 7 lb weight loss in the winter. She is maintaining but not gaining. Not only that, now they want to test her for pancreatic insufficiency because of other problems she is having. The doctor did say at one of our many appointments that he wanted to do the blood work up either way and now he is saying "no" because theywant to test for other possibilities. I am glad they are being so cautious, however, if there was ever a possibility they thought CF, I kind of want to know, from what I understand not all sweat tests are 100% accurate. I almost feel like we've hit a brick wall and now they are just grasping at straws looking for a diagnosis. It's very frustrating...any suggestions on what I should do??
 
W

worriedmom

Guest
It's been a while since I've posted, I've been trying to stay off the computer for my own mental health's sake. My now 3 year old was very sick over the winter and the doctors thought it could possibly be CF. Well, 2 sweat tests later, only 1 being successful, they collected 86 grams of sweat on the 2nd her number came back 32 on sodium and chloride 20( I think that was the order). Anyway, it was "normal". However, she still continues to have no weight gain after a 7 lb weight loss in the winter. She is maintaining but not gaining. Not only that, now they want to test her for pancreatic insufficiency because of other problems she is having. The doctor did say at one of our many appointments that he wanted to do the blood work up either way and now he is saying "no" because theywant to test for other possibilities. I am glad they are being so cautious, however, if there was ever a possibility they thought CF, I kind of want to know, from what I understand not all sweat tests are 100% accurate. I almost feel like we've hit a brick wall and now they are just grasping at straws looking for a diagnosis. It's very frustrating...any suggestions on what I should do??
 
W

worriedmom

Guest
It's been a while since I've posted, I've been trying to stay off the computer for my own mental health's sake. My now 3 year old was very sick over the winter and the doctors thought it could possibly be CF. Well, 2 sweat tests later, only 1 being successful, they collected 86 grams of sweat on the 2nd her number came back 32 on sodium and chloride 20( I think that was the order). Anyway, it was "normal". However, she still continues to have no weight gain after a 7 lb weight loss in the winter. She is maintaining but not gaining. Not only that, now they want to test her for pancreatic insufficiency because of other problems she is having. The doctor did say at one of our many appointments that he wanted to do the blood work up either way and now he is saying "no" because theywant to test for other possibilities. I am glad they are being so cautious, however, if there was ever a possibility they thought CF, I kind of want to know, from what I understand not all sweat tests are 100% accurate. I almost feel like we've hit a brick wall and now they are just grasping at straws looking for a diagnosis. It's very frustrating...any suggestions on what I should do??
 
W

worriedmom

Guest
It's been a while since I've posted, I've been trying to stay off the computer for my own mental health's sake. My now 3 year old was very sick over the winter and the doctors thought it could possibly be CF. Well, 2 sweat tests later, only 1 being successful, they collected 86 grams of sweat on the 2nd her number came back 32 on sodium and chloride 20( I think that was the order). Anyway, it was "normal". However, she still continues to have no weight gain after a 7 lb weight loss in the winter. She is maintaining but not gaining. Not only that, now they want to test her for pancreatic insufficiency because of other problems she is having. The doctor did say at one of our many appointments that he wanted to do the blood work up either way and now he is saying "no" because theywant to test for other possibilities. I am glad they are being so cautious, however, if there was ever a possibility they thought CF, I kind of want to know, from what I understand not all sweat tests are 100% accurate. I almost feel like we've hit a brick wall and now they are just grasping at straws looking for a diagnosis. It's very frustrating...any suggestions on what I should do??
 
W

worriedmom

Guest
It's been a while since I've posted, I've been trying to stay off the computer for my own mental health's sake. My now 3 year old was very sick over the winter and the doctors thought it could possibly be CF. Well, 2 sweat tests later, only 1 being successful, they collected 86 grams of sweat on the 2nd her number came back 32 on sodium and chloride 20( I think that was the order). Anyway, it was "normal". However, she still continues to have no weight gain after a 7 lb weight loss in the winter. She is maintaining but not gaining. Not only that, now they want to test her for pancreatic insufficiency because of other problems she is having. The doctor did say at one of our many appointments that he wanted to do the blood work up either way and now he is saying "no" because theywant to test for other possibilities. I am glad they are being so cautious, however, if there was ever a possibility they thought CF, I kind of want to know, from what I understand not all sweat tests are 100% accurate. I almost feel like we've hit a brick wall and now they are just grasping at straws looking for a diagnosis. It's very frustrating...any suggestions on what I should do??
 
R

Ratatosk

Administrator
Staff member
Since they're going to be taking blood for other tests, why not ask them to do blood testing for CF, too "to RULE it out".

I know I sound like a broken record, but DS's sweat test was 32; however, he's pancreatic insufficient, has cultured pseudomonas, has some sinus issues... And his blood tests came back postitive for CF.
 
R

Ratatosk

Administrator
Staff member
Since they're going to be taking blood for other tests, why not ask them to do blood testing for CF, too "to RULE it out".

I know I sound like a broken record, but DS's sweat test was 32; however, he's pancreatic insufficient, has cultured pseudomonas, has some sinus issues... And his blood tests came back postitive for CF.
 
R

Ratatosk

Administrator
Staff member
Since they're going to be taking blood for other tests, why not ask them to do blood testing for CF, too "to RULE it out".

I know I sound like a broken record, but DS's sweat test was 32; however, he's pancreatic insufficient, has cultured pseudomonas, has some sinus issues... And his blood tests came back postitive for CF.
 
R

Ratatosk

Administrator
Staff member
Since they're going to be taking blood for other tests, why not ask them to do blood testing for CF, too "to RULE it out".

I know I sound like a broken record, but DS's sweat test was 32; however, he's pancreatic insufficient, has cultured pseudomonas, has some sinus issues... And his blood tests came back postitive for CF.
 
R

Ratatosk

Administrator
Staff member
Since they're going to be taking blood for other tests, why not ask them to do blood testing for CF, too "to RULE it out".

I know I sound like a broken record, but DS's sweat test was 32; however, he's pancreatic insufficient, has cultured pseudomonas, has some sinus issues... And his blood tests came back postitive for CF.
 
R

Ratatosk

Administrator
Staff member
Since they're going to be taking blood for other tests, why not ask them to do blood testing for CF, too "to RULE it out".

I know I sound like a broken record, but DS's sweat test was 32; however, he's pancreatic insufficient, has cultured pseudomonas, has some sinus issues... And his blood tests came back postitive for CF.
 
W

worriedmom

Guest
I did suggets that they do it at the same time and I got "let's wait and see". I feel like all we've been doing is waiting and seeing and it really isn't getting us anywhere. She too, has sinus problems amongst other things . I get nervous that they are just taking the sweat test as is and going to forget about the blood work for the CF. I have been very vocal as far as my feelings for the bloodwork and they keep telling me I just have to be patient and see how everything turns out. I think not knowing is the worst part of this whole process, CF or not. I thank you for your input, I find this site very informative and the people seem great. Unfortunately, can't really discuss this with family and friends because they think it's all just coincidence. As a mother, I think you know your child and I'm following my gut on this one. Thanks again!
 
W

worriedmom

Guest
I did suggets that they do it at the same time and I got "let's wait and see". I feel like all we've been doing is waiting and seeing and it really isn't getting us anywhere. She too, has sinus problems amongst other things . I get nervous that they are just taking the sweat test as is and going to forget about the blood work for the CF. I have been very vocal as far as my feelings for the bloodwork and they keep telling me I just have to be patient and see how everything turns out. I think not knowing is the worst part of this whole process, CF or not. I thank you for your input, I find this site very informative and the people seem great. Unfortunately, can't really discuss this with family and friends because they think it's all just coincidence. As a mother, I think you know your child and I'm following my gut on this one. Thanks again!
 
W

worriedmom

Guest
I did suggets that they do it at the same time and I got "let's wait and see". I feel like all we've been doing is waiting and seeing and it really isn't getting us anywhere. She too, has sinus problems amongst other things . I get nervous that they are just taking the sweat test as is and going to forget about the blood work for the CF. I have been very vocal as far as my feelings for the bloodwork and they keep telling me I just have to be patient and see how everything turns out. I think not knowing is the worst part of this whole process, CF or not. I thank you for your input, I find this site very informative and the people seem great. Unfortunately, can't really discuss this with family and friends because they think it's all just coincidence. As a mother, I think you know your child and I'm following my gut on this one. Thanks again!
 
W

worriedmom

Guest
I did suggets that they do it at the same time and I got "let's wait and see". I feel like all we've been doing is waiting and seeing and it really isn't getting us anywhere. She too, has sinus problems amongst other things . I get nervous that they are just taking the sweat test as is and going to forget about the blood work for the CF. I have been very vocal as far as my feelings for the bloodwork and they keep telling me I just have to be patient and see how everything turns out. I think not knowing is the worst part of this whole process, CF or not. I thank you for your input, I find this site very informative and the people seem great. Unfortunately, can't really discuss this with family and friends because they think it's all just coincidence. As a mother, I think you know your child and I'm following my gut on this one. Thanks again!
 
W

worriedmom

Guest
I did suggets that they do it at the same time and I got "let's wait and see". I feel like all we've been doing is waiting and seeing and it really isn't getting us anywhere. She too, has sinus problems amongst other things . I get nervous that they are just taking the sweat test as is and going to forget about the blood work for the CF. I have been very vocal as far as my feelings for the bloodwork and they keep telling me I just have to be patient and see how everything turns out. I think not knowing is the worst part of this whole process, CF or not. I thank you for your input, I find this site very informative and the people seem great. Unfortunately, can't really discuss this with family and friends because they think it's all just coincidence. As a mother, I think you know your child and I'm following my gut on this one. Thanks again!
 
W

worriedmom

Guest
I did suggets that they do it at the same time and I got "let's wait and see". I feel like all we've been doing is waiting and seeing and it really isn't getting us anywhere. She too, has sinus problems amongst other things . I get nervous that they are just taking the sweat test as is and going to forget about the blood work for the CF. I have been very vocal as far as my feelings for the bloodwork and they keep telling me I just have to be patient and see how everything turns out. I think not knowing is the worst part of this whole process, CF or not. I thank you for your input, I find this site very informative and the people seem great. Unfortunately, can't really discuss this with family and friends because they think it's all just coincidence. As a mother, I think you know your child and I'm following my gut on this one. Thanks again!
 
R

Ratatosk

Administrator
Staff member
A suggestion was made to us by our attorney when we were having issues with a local doctor refusing to perform a test. He told us to ask the doctor to put in DS's file -- parents request a ___ test for patient, doctor refuses because....
 
R

Ratatosk

Administrator
Staff member
A suggestion was made to us by our attorney when we were having issues with a local doctor refusing to perform a test. He told us to ask the doctor to put in DS's file -- parents request a ___ test for patient, doctor refuses because....
 
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