Overwhelmed with emotion waitings

[violeteyes00]

My son is 15 months old. For 8 months he has had very noisy breathing. It almost sounds like he has something stuck in his throat. Everyone will ask if he is sick or congested, its just the way he breathes. Our old doctor dismissed it at one point laughed and said he sounded like a seal. We brought it up for 6 months and nothing but an xray to see if something is stuck in his throat. His new doctor seems to wants to find what is causing it. He said possibly allergies. He completed a pediatric blood panel for allergies and everything was normal. At his 15 month check up he wanted him tested for CF. He is barely staying on the growth chart at 3-5% for weight. We have also struggled with URI and ear infections up until recently he had tubes put in. At one point in December he was wheezing and almost had pneumonia and he was on antibiotics for a month and a half (3 differnt ones). After reading about CF I am quite scared. I never realized there was anything wrong with his bowel movements, I just thought it was normal for him. They are never solid or formed, usually all over his diaper. He will have a sweat test in 2 weeks. Any thoughts on what I should ask? Do you find out the results that day or have to wait?

 

[violeteyes00]

My son is 15 months old. For 8 months he has had very noisy breathing. It almost sounds like he has something stuck in his throat. Everyone will ask if he is sick or congested, its just the way he breathes. Our old doctor dismissed it at one point laughed and said he sounded like a seal. We brought it up for 6 months and nothing but an xray to see if something is stuck in his throat. His new doctor seems to wants to find what is causing it. He said possibly allergies. He completed a pediatric blood panel for allergies and everything was normal. At his 15 month check up he wanted him tested for CF. He is barely staying on the growth chart at 3-5% for weight. We have also struggled with URI and ear infections up until recently he had tubes put in. At one point in December he was wheezing and almost had pneumonia and he was on antibiotics for a month and a half (3 differnt ones). After reading about CF I am quite scared. I never realized there was anything wrong with his bowel movements, I just thought it was normal for him. They are never solid or formed, usually all over his diaper. He will have a sweat test in 2 weeks. Any thoughts on what I should ask? Do you find out the results that day or have to wait?

 

[violeteyes00]

My son is 15 months old. For 8 months he has had very noisy breathing. It almost sounds like he has something stuck in his throat. Everyone will ask if he is sick or congested, its just the way he breathes. Our old doctor dismissed it at one point laughed and said he sounded like a seal. We brought it up for 6 months and nothing but an xray to see if something is stuck in his throat. His new doctor seems to wants to find what is causing it. He said possibly allergies. He completed a pediatric blood panel for allergies and everything was normal. At his 15 month check up he wanted him tested for CF. He is barely staying on the growth chart at 3-5% for weight. We have also struggled with URI and ear infections up until recently he had tubes put in. At one point in December he was wheezing and almost had pneumonia and he was on antibiotics for a month and a half (3 differnt ones). After reading about CF I am quite scared. I never realized there was anything wrong with his bowel movements, I just thought it was normal for him. They are never solid or formed, usually all over his diaper. He will have a sweat test in 2 weeks. Any thoughts on what I should ask? Do you find out the results that day or have to wait?

 

[kellyga]

I believe it takes a couple of days to get back sweat results.

Sorry that you are going through this. CF can sound really scary reading about it online and the generalities that go along with the disease. Every CFer is different, even brothers and sisters with the same DNA and environment. Remember that if your son does have CF, the care that he will get will help him to grow and be healthy. I feel fortunate that my daughter was diagnosed at birth, but I have talked to people who got a later diagnosis and said that the difference in their child pre and post diagnosis was like having a different kid. My point is that once you know what you are dealing with, you will have the information to make him better. Good luck!

 

[kellyga]

I believe it takes a couple of days to get back sweat results.

Sorry that you are going through this. CF can sound really scary reading about it online and the generalities that go along with the disease. Every CFer is different, even brothers and sisters with the same DNA and environment. Remember that if your son does have CF, the care that he will get will help him to grow and be healthy. I feel fortunate that my daughter was diagnosed at birth, but I have talked to people who got a later diagnosis and said that the difference in their child pre and post diagnosis was like having a different kid. My point is that once you know what you are dealing with, you will have the information to make him better. Good luck!

 

[kellyga]

I believe it takes a couple of days to get back sweat results.
<br />
<br />Sorry that you are going through this. CF can sound really scary reading about it online and the generalities that go along with the disease. Every CFer is different, even brothers and sisters with the same DNA and environment. Remember that if your son does have CF, the care that he will get will help him to grow and be healthy. I feel fortunate that my daughter was diagnosed at birth, but I have talked to people who got a later diagnosis and said that the difference in their child pre and post diagnosis was like having a different kid. My point is that once you know what you are dealing with, you will have the information to make him better. Good luck!

 

[Rebjane]

I got sweat test results for my son on the same day he had the test done. Where are you getting the sweat test done? It is important that you are having it done at a place that does them frequently; we had gone to Children's Hospital in Boston. hang in there!

 

[Rebjane]

I got sweat test results for my son on the same day he had the test done. Where are you getting the sweat test done? It is important that you are having it done at a place that does them frequently; we had gone to Children's Hospital in Boston. hang in there!

 

[Rebjane]

I got sweat test results for my son on the same day he had the test done. Where are you getting the sweat test done? It is important that you are having it done at a place that does them frequently; we had gone to Children's Hospital in Boston. hang in there!

 

[violeteyes00]

We have an appointment at Nemours Childern Hospital in Jacksonville. I am not sure what department there we are going to, the nurse setup the appointment. I know they only do sweat tests on Wednesdays which I guess is why it is taking so long to get in.

 

[violeteyes00]

We have an appointment at Nemours Childern Hospital in Jacksonville. I am not sure what department there we are going to, the nurse setup the appointment. I know they only do sweat tests on Wednesdays which I guess is why it is taking so long to get in.

 

[violeteyes00]

We have an appointment at Nemours Childern Hospital in Jacksonville. I am not sure what department there we are going to, the nurse setup the appointment. I know they only do sweat tests on Wednesdays which I guess is why it is taking so long to get in.

 

[imagine04]

I believe it varies hospital to hospital (depending on if where you are going is an accredited CF Care Center) on when you get back the results. With my son we got the results the same day. Makes it nice so you don't have further waiting which is super hard.

I'll be thinking and praying for you. Please keep us updated! <img src="i/expressions/praying.gif" border="0">

 

[imagine04]

I believe it varies hospital to hospital (depending on if where you are going is an accredited CF Care Center) on when you get back the results. With my son we got the results the same day. Makes it nice so you don't have further waiting which is super hard.

I'll be thinking and praying for you. Please keep us updated! <img src="i/expressions/praying.gif" border="0">

 

[imagine04]

I believe it varies hospital to hospital (depending on if where you are going is an accredited CF Care Center) on when you get back the results. With my son we got the results the same day. Makes it nice so you don't have further waiting which is super hard.
<br />
<br />I'll be thinking and praying for you. Please keep us updated! <img src="i/expressions/praying.gif" border="0">

 

[violeteyes00]

Thank you! I did not know about the accreditation. I just checke on their website and it does say they are nationally accredited as Cystic Fibrosis Care Centers by the Cystic Fibrosis Foundation. This makes me feel a little better. Does anyone know how accurate the sweat tests are? I guess that may be a question to ask when I go but I thought I would ask here.

 

[violeteyes00]

Thank you! I did not know about the accreditation. I just checke on their website and it does say they are nationally accredited as Cystic Fibrosis Care Centers by the Cystic Fibrosis Foundation. This makes me feel a little better. Does anyone know how accurate the sweat tests are? I guess that may be a question to ask when I go but I thought I would ask here.

 

[violeteyes00]

Thank you! I did not know about the accreditation. I just checke on their website and it does say they are nationally accredited as Cystic Fibrosis Care Centers by the Cystic Fibrosis Foundation. This makes me feel a little better. Does anyone know how accurate the sweat tests are? I guess that may be a question to ask when I go but I thought I would ask here.

 

[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!

 

[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!