Looking for Advice

J

JoKa

New member
Thanks Alyssa!

My 7 year old is being treated for her third pneumonia in less than a year and 1/2. She has been treated for "reactive airway" since she was 3 months old and has been hospitalized twice. Her doctor ordered a sweat test today. We will be taking her to a Pulmonary doctor as well. Today is the first day any mention of looking into CF was made. Any advice?
 
J

JoKa

New member
Thanks Alyssa!

My 7 year old is being treated for her third pneumonia in less than a year and 1/2. She has been treated for "reactive airway" since she was 3 months old and has been hospitalized twice. Her doctor ordered a sweat test today. We will be taking her to a Pulmonary doctor as well. Today is the first day any mention of looking into CF was made. Any advice?
 
J

JoKa

New member
Thanks Alyssa!

My 7 year old is being treated for her third pneumonia in less than a year and 1/2. She has been treated for "reactive airway" since she was 3 months old and has been hospitalized twice. Her doctor ordered a sweat test today. We will be taking her to a Pulmonary doctor as well. Today is the first day any mention of looking into CF was made. Any advice?
 
J

JoKa

New member
Thanks Alyssa!

My 7 year old is being treated for her third pneumonia in less than a year and 1/2. She has been treated for "reactive airway" since she was 3 months old and has been hospitalized twice. Her doctor ordered a sweat test today. We will be taking her to a Pulmonary doctor as well. Today is the first day any mention of looking into CF was made. Any advice?
 
J

JoKa

New member
Thanks Alyssa!
<br />
<br />My 7 year old is being treated for her third pneumonia in less than a year and 1/2. She has been treated for "reactive airway" since she was 3 months old and has been hospitalized twice. Her doctor ordered a sweat test today. We will be taking her to a Pulmonary doctor as well. Today is the first day any mention of looking into CF was made. Any advice?
 
T

Terry

Guest
I know you are hoping it is not CF, and I am as well. However, if it turns out that it is, it is not as terrible as you probably think it is. My step-daughter was diagnosed with asthma until she was almost 4 years old. Her getting diagnosed with CF was heart breaking for us. All we could think about was how much worse things were going to be now that se has CF and not asthma. Life is actually so much better for her now that she is getting the proper treatment for the right disease. She is growing, active (a little too active, we also did not know she had ADHD while she had "Asthma," lol), and you can not pick her out of a crowd as the cf kid. We had a lot of misconceptions about CF, like she was going to be sick all the time, but she is not.

My opinion is that there are a lot worse things out there (like misdiagnosis) and Thank God Marissa has something we can treat and allow her to be a normal child.

Take things one step at a time, and if it turns out to be CF, you have found the right place to come to for support and information.

Take Care,
Terry
 
T

Terry

Guest
I know you are hoping it is not CF, and I am as well. However, if it turns out that it is, it is not as terrible as you probably think it is. My step-daughter was diagnosed with asthma until she was almost 4 years old. Her getting diagnosed with CF was heart breaking for us. All we could think about was how much worse things were going to be now that se has CF and not asthma. Life is actually so much better for her now that she is getting the proper treatment for the right disease. She is growing, active (a little too active, we also did not know she had ADHD while she had "Asthma," lol), and you can not pick her out of a crowd as the cf kid. We had a lot of misconceptions about CF, like she was going to be sick all the time, but she is not.

My opinion is that there are a lot worse things out there (like misdiagnosis) and Thank God Marissa has something we can treat and allow her to be a normal child.

Take things one step at a time, and if it turns out to be CF, you have found the right place to come to for support and information.

Take Care,
Terry
 
T

Terry

Guest
I know you are hoping it is not CF, and I am as well. However, if it turns out that it is, it is not as terrible as you probably think it is. My step-daughter was diagnosed with asthma until she was almost 4 years old. Her getting diagnosed with CF was heart breaking for us. All we could think about was how much worse things were going to be now that se has CF and not asthma. Life is actually so much better for her now that she is getting the proper treatment for the right disease. She is growing, active (a little too active, we also did not know she had ADHD while she had "Asthma," lol), and you can not pick her out of a crowd as the cf kid. We had a lot of misconceptions about CF, like she was going to be sick all the time, but she is not.

My opinion is that there are a lot worse things out there (like misdiagnosis) and Thank God Marissa has something we can treat and allow her to be a normal child.

Take things one step at a time, and if it turns out to be CF, you have found the right place to come to for support and information.

Take Care,
Terry
 
T

Terry

Guest
I know you are hoping it is not CF, and I am as well. However, if it turns out that it is, it is not as terrible as you probably think it is. My step-daughter was diagnosed with asthma until she was almost 4 years old. Her getting diagnosed with CF was heart breaking for us. All we could think about was how much worse things were going to be now that se has CF and not asthma. Life is actually so much better for her now that she is getting the proper treatment for the right disease. She is growing, active (a little too active, we also did not know she had ADHD while she had "Asthma," lol), and you can not pick her out of a crowd as the cf kid. We had a lot of misconceptions about CF, like she was going to be sick all the time, but she is not.

My opinion is that there are a lot worse things out there (like misdiagnosis) and Thank God Marissa has something we can treat and allow her to be a normal child.

Take things one step at a time, and if it turns out to be CF, you have found the right place to come to for support and information.

Take Care,
Terry
 
T

Terry

Guest
I know you are hoping it is not CF, and I am as well. However, if it turns out that it is, it is not as terrible as you probably think it is. My step-daughter was diagnosed with asthma until she was almost 4 years old. Her getting diagnosed with CF was heart breaking for us. All we could think about was how much worse things were going to be now that se has CF and not asthma. Life is actually so much better for her now that she is getting the proper treatment for the right disease. She is growing, active (a little too active, we also did not know she had ADHD while she had "Asthma," lol), and you can not pick her out of a crowd as the cf kid. We had a lot of misconceptions about CF, like she was going to be sick all the time, but she is not.
<br />
<br />My opinion is that there are a lot worse things out there (like misdiagnosis) and Thank God Marissa has something we can treat and allow her to be a normal child.
<br />
<br />Take things one step at a time, and if it turns out to be CF, you have found the right place to come to for support and information.
<br />
<br />Take Care,
<br />Terry
 
N

NoExcuses

New member
Keep in mind that sweat tests can give a false negative. There are plenty of CFers who sweat tests come out negative but they in fact have CF.

Ambry has a test that tests for all known CF mutations - called the Ambry amplified. I would recommend getting that test as well. Much lower rate of false negatives.

Best of luck!
 
N

NoExcuses

New member
Keep in mind that sweat tests can give a false negative. There are plenty of CFers who sweat tests come out negative but they in fact have CF.

Ambry has a test that tests for all known CF mutations - called the Ambry amplified. I would recommend getting that test as well. Much lower rate of false negatives.

Best of luck!
 
N

NoExcuses

New member
Keep in mind that sweat tests can give a false negative. There are plenty of CFers who sweat tests come out negative but they in fact have CF.

Ambry has a test that tests for all known CF mutations - called the Ambry amplified. I would recommend getting that test as well. Much lower rate of false negatives.

Best of luck!
 
N

NoExcuses

New member
Keep in mind that sweat tests can give a false negative. There are plenty of CFers who sweat tests come out negative but they in fact have CF.

Ambry has a test that tests for all known CF mutations - called the Ambry amplified. I would recommend getting that test as well. Much lower rate of false negatives.

Best of luck!
 
N

NoExcuses

New member
Keep in mind that sweat tests can give a false negative. There are plenty of CFers who sweat tests come out negative but they in fact have CF.
<br />
<br />Ambry has a test that tests for all known CF mutations - called the Ambry amplified. I would recommend getting that test as well. Much lower rate of false negatives.
<br />
<br />Best of luck!
 
A

AbbysMama

New member
My advice is to not stress out (easier said than done I know). Try to absorb as much information as you can from this site and from the doctors. Ask questions. If they are unsure, check on here (not to second-guess them, but to gain additional perspectives).

I think that the genetic test is the way to go. So many on here were misdiagnosed from false negative sweat tests. If they are not interested in doing it, keep pushing. Your instincts will always keep your child's best interested in the minds of the doctors.

Hope this helps!

Emily
 
A

AbbysMama

New member
My advice is to not stress out (easier said than done I know). Try to absorb as much information as you can from this site and from the doctors. Ask questions. If they are unsure, check on here (not to second-guess them, but to gain additional perspectives).

I think that the genetic test is the way to go. So many on here were misdiagnosed from false negative sweat tests. If they are not interested in doing it, keep pushing. Your instincts will always keep your child's best interested in the minds of the doctors.

Hope this helps!

Emily
 
A

AbbysMama

New member
My advice is to not stress out (easier said than done I know). Try to absorb as much information as you can from this site and from the doctors. Ask questions. If they are unsure, check on here (not to second-guess them, but to gain additional perspectives).

I think that the genetic test is the way to go. So many on here were misdiagnosed from false negative sweat tests. If they are not interested in doing it, keep pushing. Your instincts will always keep your child's best interested in the minds of the doctors.

Hope this helps!

Emily
 
A

AbbysMama

New member
My advice is to not stress out (easier said than done I know). Try to absorb as much information as you can from this site and from the doctors. Ask questions. If they are unsure, check on here (not to second-guess them, but to gain additional perspectives).

I think that the genetic test is the way to go. So many on here were misdiagnosed from false negative sweat tests. If they are not interested in doing it, keep pushing. Your instincts will always keep your child's best interested in the minds of the doctors.

Hope this helps!

Emily
 
A

AbbysMama

New member
My advice is to not stress out (easier said than done I know). Try to absorb as much information as you can from this site and from the doctors. Ask questions. If they are unsure, check on here (not to second-guess them, but to gain additional perspectives).
<br />
<br />I think that the genetic test is the way to go. So many on here were misdiagnosed from false negative sweat tests. If they are not interested in doing it, keep pushing. Your instincts will always keep your child's best interested in the minds of the doctors.
<br />
<br />Hope this helps!
<br />
<br />Emily
 
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