Overwhelmed with emotion waitings

[violeteyes00]

I am so upset. I took my son back to the doctor today because he is yet again sick with an upper respritory virus and has been for 5 days with no improvements. I was told basically to let it run its coarse. I was told today by a different doctor in the practice he doesn't "look" like he has CF. Well that is good news if he doesn't but now am I wasting my time going to the sweat test... I know it needs to be done but do CF kids look a certain way? I just dont get it and am tired of my son being sick all the time. I just feel like its a waste of time and no doctor seems to want to help him get better. Two doctors in the same office with different opinions. I even asked about a stool sample he told me to dump it in the toilet and see if it floats... Really!? Why cant they take blood and look at his organ functions. Somethings not right and I feel like no one is listening!

 

[Rebjane]

When are you getting the sweat test for your son; is it soon?

Kids with CF do not "look a certain way" In fact, my daughter with CF looks like any other 8 year old girl; from the outside. Sometimes, she looks so good it's hard for people to understand what we deal with; with her health issues on a daily basis. As a mom, I am so in tune with my daughter I can tell when something is not right when NO ONE Else can(even my husband).

General pediatricians can be VERY misinformed about CF. However, though it does sound crazy; the dumping the stool in the toilet is a good idea. When a child with CF is malabsorbing fat, the oil and stool float to the top of the toilet. A well absorbed stool will sink to the bottom. Your child is in diapers so it is harder to get the stool in the toilet but I had tried plopping a stool from the diaper in the toilet to check for my daughter.

Even now, I use that as a measure of how well my daughter is absorbing her food/enzymes. My daughter knows she has either a "floater" or a "sinker" for stool and what that means.

I hope the sweat test is soon for your piece of mind. Keep asking questions...

 

[Rebjane]

When are you getting the sweat test for your son; is it soon?

Kids with CF do not "look a certain way" In fact, my daughter with CF looks like any other 8 year old girl; from the outside. Sometimes, she looks so good it's hard for people to understand what we deal with; with her health issues on a daily basis. As a mom, I am so in tune with my daughter I can tell when something is not right when NO ONE Else can(even my husband).

General pediatricians can be VERY misinformed about CF. However, though it does sound crazy; the dumping the stool in the toilet is a good idea. When a child with CF is malabsorbing fat, the oil and stool float to the top of the toilet. A well absorbed stool will sink to the bottom. Your child is in diapers so it is harder to get the stool in the toilet but I had tried plopping a stool from the diaper in the toilet to check for my daughter.

Even now, I use that as a measure of how well my daughter is absorbing her food/enzymes. My daughter knows she has either a "floater" or a "sinker" for stool and what that means.

I hope the sweat test is soon for your piece of mind. Keep asking questions...

 

[Rebjane]

When are you getting the sweat test for your son; is it soon?
<br />
<br />Kids with CF do not "look a certain way" In fact, my daughter with CF looks like any other 8 year old girl; from the outside. Sometimes, she looks so good it's hard for people to understand what we deal with; with her health issues on a daily basis. As a mom, I am so in tune with my daughter I can tell when something is not right when NO ONE Else can(even my husband).
<br />
<br />General pediatricians can be VERY misinformed about CF. However, though it does sound crazy; the dumping the stool in the toilet is a good idea. When a child with CF is malabsorbing fat, the oil and stool float to the top of the toilet. A well absorbed stool will sink to the bottom. Your child is in diapers so it is harder to get the stool in the toilet but I had tried plopping a stool from the diaper in the toilet to check for my daughter.
<br />
<br />Even now, I use that as a measure of how well my daughter is absorbing her food/enzymes. My daughter knows she has either a "floater" or a "sinker" for stool and what that means.
<br />
<br />I hope the sweat test is soon for your piece of mind. Keep asking questions...

 

[imagine04]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>violeteyes00</b></i>

I am so upset. I took my son back to the doctor today because he is yet again sick with an upper respritory virus and has been for 5 days with no improvements. I was told basically to let it run its coarse. I was told today by a different doctor in the practice he doesn't "look" like he has CF. Well that is good news if he doesn't but now am I wasting my time going to the sweat test... I know it needs to be done but do CF kids look a certain way? I just dont get it and am tired of my son being sick all the time. I just feel like its a waste of time and no doctor seems to want to help him get better. Two doctors in the same office with different opinions. I even asked about a stool sample he told me to dump it in the toilet and see if it floats... Really!? Why cant they take blood and look at his organ functions. Somethings not right and I feel like no one is listening!</end quote></div>

Wow... no offense but as a mom with a child that has CF i'd LOVE to slap your doctor right now. That is the type of comment you'd expect from someone that doesn't know a thing about CF but for a doctor to presume that all CF patients <i><b>look</b></i> a certain way really bothers me. My son looks healthy. HE HAS CYSTIC FIBROSIS. The tests don't lie.

Please don't feel like it's a waste of time. Your son has a lot of the classic signs of CF. The sweat test isn't even a guarantee always -- sometimes it's better to have a full genetic screen done but if the sweat test comes back + at least you'll have some answers.

As far as "floating" poop imo some kids are just floaters and some are sinkers no matter what you do. My son is a floater -- doesn't matter what we try he has been a floater since day 1 dx. I'd start searching for docs that are more supportive of you in your fight to find out what is wrong with your child!

Good luck to you mamma. I know what you're going through is hard. But don't let your doctor make you feel like you're wasting your time!

Feel free to add me on Facebook if you'd like. There you can see just how healthy my CF son looks. All of us cf parents do our best to keep our kids looking AND feeling healthy! https://www.facebook.com/home.php#!/jeanne.howell2

 

[imagine04]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>violeteyes00</b></i>

I am so upset. I took my son back to the doctor today because he is yet again sick with an upper respritory virus and has been for 5 days with no improvements. I was told basically to let it run its coarse. I was told today by a different doctor in the practice he doesn't "look" like he has CF. Well that is good news if he doesn't but now am I wasting my time going to the sweat test... I know it needs to be done but do CF kids look a certain way? I just dont get it and am tired of my son being sick all the time. I just feel like its a waste of time and no doctor seems to want to help him get better. Two doctors in the same office with different opinions. I even asked about a stool sample he told me to dump it in the toilet and see if it floats... Really!? Why cant they take blood and look at his organ functions. Somethings not right and I feel like no one is listening!</end quote>

Wow... no offense but as a mom with a child that has CF i'd LOVE to slap your doctor right now. That is the type of comment you'd expect from someone that doesn't know a thing about CF but for a doctor to presume that all CF patients <i><b>look</b></i> a certain way really bothers me. My son looks healthy. HE HAS CYSTIC FIBROSIS. The tests don't lie.

Please don't feel like it's a waste of time. Your son has a lot of the classic signs of CF. The sweat test isn't even a guarantee always -- sometimes it's better to have a full genetic screen done but if the sweat test comes back + at least you'll have some answers.

As far as "floating" poop imo some kids are just floaters and some are sinkers no matter what you do. My son is a floater -- doesn't matter what we try he has been a floater since day 1 dx. I'd start searching for docs that are more supportive of you in your fight to find out what is wrong with your child!

Good luck to you mamma. I know what you're going through is hard. But don't let your doctor make you feel like you're wasting your time!

Feel free to add me on Facebook if you'd like. There you can see just how healthy my CF son looks. All of us cf parents do our best to keep our kids looking AND feeling healthy! https://www.facebook.com/home.php#!/jeanne.howell2

 

[imagine04]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>violeteyes00</b></i>
<br />
<br />I am so upset. I took my son back to the doctor today because he is yet again sick with an upper respritory virus and has been for 5 days with no improvements. I was told basically to let it run its coarse. I was told today by a different doctor in the practice he doesn't "look" like he has CF. Well that is good news if he doesn't but now am I wasting my time going to the sweat test... I know it needs to be done but do CF kids look a certain way? I just dont get it and am tired of my son being sick all the time. I just feel like its a waste of time and no doctor seems to want to help him get better. Two doctors in the same office with different opinions. I even asked about a stool sample he told me to dump it in the toilet and see if it floats... Really!? Why cant they take blood and look at his organ functions. Somethings not right and I feel like no one is listening!</end quote>
<br />
<br />Wow... no offense but as a mom with a child that has CF i'd LOVE to slap your doctor right now. That is the type of comment you'd expect from someone that doesn't know a thing about CF but for a doctor to presume that all CF patients <i><b>look</b></i> a certain way really bothers me. My son looks healthy. HE HAS CYSTIC FIBROSIS. The tests don't lie.
<br />
<br />Please don't feel like it's a waste of time. Your son has a lot of the classic signs of CF. The sweat test isn't even a guarantee always -- sometimes it's better to have a full genetic screen done but if the sweat test comes back + at least you'll have some answers.
<br />
<br />As far as "floating" poop imo some kids are just floaters and some are sinkers no matter what you do. My son is a floater -- doesn't matter what we try he has been a floater since day 1 dx. I'd start searching for docs that are more supportive of you in your fight to find out what is wrong with your child!
<br />
<br />Good luck to you mamma. I know what you're going through is hard. But don't let your doctor make you feel like you're wasting your time!
<br />
<br />Feel free to add me on Facebook if you'd like. There you can see just how healthy my CF son looks. All of us cf parents do our best to keep our kids looking AND feeling healthy! https://www.facebook.com/home.php#!/jeanne.howell2

 

[Ratatosk]

Many of us have received comments that our children don't LOOK sick. Unfortunately most general practioners aren't familiar enough with CF to know what to look for or listen for. IMO, I would've asked them to do a throat or sputum culture for cf "bugs".

CF or not, your child is having health issues and you as a parent what to get some answers. I'd keep pushing for testing. I know some people who've used the phrase "to rule out cf" when they've requested more extensive testing.

 

[Ratatosk]

Many of us have received comments that our children don't LOOK sick. Unfortunately most general practioners aren't familiar enough with CF to know what to look for or listen for. IMO, I would've asked them to do a throat or sputum culture for cf "bugs".

CF or not, your child is having health issues and you as a parent what to get some answers. I'd keep pushing for testing. I know some people who've used the phrase "to rule out cf" when they've requested more extensive testing.

 

[Ratatosk]

Many of us have received comments that our children don't LOOK sick. Unfortunately most general practioners aren't familiar enough with CF to know what to look for or listen for. IMO, I would've asked them to do a throat or sputum culture for cf "bugs".
<br />
<br />CF or not, your child is having health issues and you as a parent what to get some answers. I'd keep pushing for testing. I know some people who've used the phrase "to rule out cf" when they've requested more extensive testing.

 

[violeteyes00]

Well the results are in and they were negative. So we feel a sigh of relief especially considering when we went in the tech conducting the sweat test said "Well I hear why I am testing you today" she was talking to my son as he was breathing / coughing... lots of congestion (as always). It's like only if he could clear his throat but then he will and its still there.

So now we are off trying to figure out what is wrong. I have asked the doctor for a pancreatic test as I am sure something is wrong with his digestion. The doctor doesn't seem to concerned which I dont get. My son lost almost a pound in a week (even the nurse was shocked). If it was me I would be thrilled but it is my son who only weighed 21.5 now ways 20.8. At 16 months that is quite small I think.

He has also started to vomit for no reason. We could be in Walmart, at home, dining out... it really doesnt matter. All of a sudden he will vomit. Today... he has had 3 large loose stools... I just wish I knew what is wrong!

 

[violeteyes00]

Well the results are in and they were negative. So we feel a sigh of relief especially considering when we went in the tech conducting the sweat test said "Well I hear why I am testing you today" she was talking to my son as he was breathing / coughing... lots of congestion (as always). It's like only if he could clear his throat but then he will and its still there.

So now we are off trying to figure out what is wrong. I have asked the doctor for a pancreatic test as I am sure something is wrong with his digestion. The doctor doesn't seem to concerned which I dont get. My son lost almost a pound in a week (even the nurse was shocked). If it was me I would be thrilled but it is my son who only weighed 21.5 now ways 20.8. At 16 months that is quite small I think.

He has also started to vomit for no reason. We could be in Walmart, at home, dining out... it really doesnt matter. All of a sudden he will vomit. Today... he has had 3 large loose stools... I just wish I knew what is wrong!

 

[violeteyes00]

Well the results are in and they were negative. So we feel a sigh of relief especially considering when we went in the tech conducting the sweat test said "Well I hear why I am testing you today" she was talking to my son as he was breathing / coughing... lots of congestion (as always). It's like only if he could clear his throat but then he will and its still there.
<br />
<br />So now we are off trying to figure out what is wrong. I have asked the doctor for a pancreatic test as I am sure something is wrong with his digestion. The doctor doesn't seem to concerned which I dont get. My son lost almost a pound in a week (even the nurse was shocked). If it was me I would be thrilled but it is my son who only weighed 21.5 now ways 20.8. At 16 months that is quite small I think.
<br />
<br />He has also started to vomit for no reason. We could be in Walmart, at home, dining out... it really doesnt matter. All of a sudden he will vomit. Today... he has had 3 large loose stools... I just wish I knew what is wrong!

 

[Karenmichelle]

I am sorry you are having to go through all of this. It is never easy to have a little one sick...esp when looking for answers. We are in the process of CF testing for our 4 yr old son. He passed his sweat test, but continues to have a lot of respiratory issues.
They did a bronchoscopy on him and decided we needed to proceed to genetic testing for CF b/c he looked so bad. He has had a tonsillectomy,adenoidectomy, and cilia biopsy for PCD. The biopsy was negative. His symptoms continued, so he had a sinus CT done. It showed his sinuses were completely blocked...no air. They cleaned him out and found polyps in addition to all the diseased and inflamed tissue. He has not gained weight in 2yrs...weighs 31 lbs. Lots of mucous in his stool. They are weird...always different to some degree. Tries to eat and stops, saying his stomach hurts. Had to go to the ER for abdominal pain. They thought it was an appedicitis, but he had severe ab/stomach/bladder distention.
It is one thing after another. So, we wait and do what we can. And Pray.
Hope you get some answers. Keep asking, pushing and looking...be his advocate. We have a great group of doctors, but I am not there to make friends. But to get my son healthy <img src="i/expressions/face-icon-small-smile.gif" border="0"> God bless.

 

[Karenmichelle]

I am sorry you are having to go through all of this. It is never easy to have a little one sick...esp when looking for answers. We are in the process of CF testing for our 4 yr old son. He passed his sweat test, but continues to have a lot of respiratory issues.
They did a bronchoscopy on him and decided we needed to proceed to genetic testing for CF b/c he looked so bad. He has had a tonsillectomy,adenoidectomy, and cilia biopsy for PCD. The biopsy was negative. His symptoms continued, so he had a sinus CT done. It showed his sinuses were completely blocked...no air. They cleaned him out and found polyps in addition to all the diseased and inflamed tissue. He has not gained weight in 2yrs...weighs 31 lbs. Lots of mucous in his stool. They are weird...always different to some degree. Tries to eat and stops, saying his stomach hurts. Had to go to the ER for abdominal pain. They thought it was an appedicitis, but he had severe ab/stomach/bladder distention.
It is one thing after another. So, we wait and do what we can. And Pray.
Hope you get some answers. Keep asking, pushing and looking...be his advocate. We have a great group of doctors, but I am not there to make friends. But to get my son healthy <img src="i/expressions/face-icon-small-smile.gif" border="0"> God bless.

 

[Karenmichelle]

I am sorry you are having to go through all of this. It is never easy to have a little one sick...esp when looking for answers. We are in the process of CF testing for our 4 yr old son. He passed his sweat test, but continues to have a lot of respiratory issues.
<br />They did a bronchoscopy on him and decided we needed to proceed to genetic testing for CF b/c he looked so bad. He has had a tonsillectomy,adenoidectomy, and cilia biopsy for PCD. The biopsy was negative. His symptoms continued, so he had a sinus CT done. It showed his sinuses were completely blocked...no air. They cleaned him out and found polyps in addition to all the diseased and inflamed tissue. He has not gained weight in 2yrs...weighs 31 lbs. Lots of mucous in his stool. They are weird...always different to some degree. Tries to eat and stops, saying his stomach hurts. Had to go to the ER for abdominal pain. They thought it was an appedicitis, but he had severe ab/stomach/bladder distention.
<br />It is one thing after another. So, we wait and do what we can. And Pray.
<br />Hope you get some answers. Keep asking, pushing and looking...be his advocate. We have a great group of doctors, but I am not there to make friends. But to get my son healthy <img src="i/expressions/face-icon-small-smile.gif" border="0"> God bless.

 

[Ratatosk]

What were the numbers on the Sweat Test? Or did they tell you it was just negative? Was the sweat test conducted at an accreditted CF facility?

Based on your son's symptoms I would push for more answers and further testing. Vomiting could be caused by reflux. Or DS had vomiting issues when he became constipated.

 

[Ratatosk]

What were the numbers on the Sweat Test? Or did they tell you it was just negative? Was the sweat test conducted at an accreditted CF facility?

Based on your son's symptoms I would push for more answers and further testing. Vomiting could be caused by reflux. Or DS had vomiting issues when he became constipated.

 

[Ratatosk]

What were the numbers on the Sweat Test? Or did they tell you it was just negative? Was the sweat test conducted at an accreditted CF facility?
<br />
<br />Based on your son's symptoms I would push for more answers and further testing. Vomiting could be caused by reflux. Or DS had vomiting issues when he became constipated.

 

[Beccamom]

We are going through the same diagnostic process. I am sooooo sorry to hear you are going through the same thing. If you as a mom have concerns I would recommend requesting genetic testing for Cystic Fibrosis and continue reading on this website. This has been the most compassionate group of people I have ever known. My daughter is 11 years old and when she was 14 months old she had a negative sweat test and then I totally dismissed the possibility of CF. Since that time she continued to have respiratory infection after infection and pneumonia after pneumonia. Her current pulmonologist is convinced she has CF. Trust your mom's intuition. Best wishes.