my son diagnosed today

J

JoKa

New member
I've never done this before so I'm sorry if it's in the wrong place.

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
I've never done this before so I'm sorry if it's in the wrong place.

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
I've never done this before so I'm sorry if it's in the wrong place.

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
I've never done this before so I'm sorry if it's in the wrong place.

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
I've never done this before so I'm sorry if it's in the wrong place.
<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?
 
A

Alyssa

New member
<b>JoKa</b>

It's not necessarily the "wrong" place but it might be better to start your own post so people know to look at it and you can get your own answers.

My best advise is ask for the sweat test number -- don't just let them tell you positive or negative .. well actually it's the negative you need to watch out for since so many people with CF have normal sweat test numbers... see my blog for details... my daughter was misdiagnosed because of a high normal number and mild case.

Insist on genetic testing to get the complete answer ... ask for FULL testing, including looking for ALL 1581 genes, not just 89 or so (typically done because it's much cheaper)

My other piece of advise... stay here, hang out and learn !
 
A

Alyssa

New member
<b>JoKa</b>

It's not necessarily the "wrong" place but it might be better to start your own post so people know to look at it and you can get your own answers.

My best advise is ask for the sweat test number -- don't just let them tell you positive or negative .. well actually it's the negative you need to watch out for since so many people with CF have normal sweat test numbers... see my blog for details... my daughter was misdiagnosed because of a high normal number and mild case.

Insist on genetic testing to get the complete answer ... ask for FULL testing, including looking for ALL 1581 genes, not just 89 or so (typically done because it's much cheaper)

My other piece of advise... stay here, hang out and learn !
 
A

Alyssa

New member
<b>JoKa</b>

It's not necessarily the "wrong" place but it might be better to start your own post so people know to look at it and you can get your own answers.

My best advise is ask for the sweat test number -- don't just let them tell you positive or negative .. well actually it's the negative you need to watch out for since so many people with CF have normal sweat test numbers... see my blog for details... my daughter was misdiagnosed because of a high normal number and mild case.

Insist on genetic testing to get the complete answer ... ask for FULL testing, including looking for ALL 1581 genes, not just 89 or so (typically done because it's much cheaper)

My other piece of advise... stay here, hang out and learn !
 
A

Alyssa

New member
<b>JoKa</b>

It's not necessarily the "wrong" place but it might be better to start your own post so people know to look at it and you can get your own answers.

My best advise is ask for the sweat test number -- don't just let them tell you positive or negative .. well actually it's the negative you need to watch out for since so many people with CF have normal sweat test numbers... see my blog for details... my daughter was misdiagnosed because of a high normal number and mild case.

Insist on genetic testing to get the complete answer ... ask for FULL testing, including looking for ALL 1581 genes, not just 89 or so (typically done because it's much cheaper)

My other piece of advise... stay here, hang out and learn !
 
A

Alyssa

New member
<b>JoKa</b>
<br />
<br />It's not necessarily the "wrong" place but it might be better to start your own post so people know to look at it and you can get your own answers.
<br />
<br />My best advise is ask for the sweat test number -- don't just let them tell you positive or negative .. well actually it's the negative you need to watch out for since so many people with CF have normal sweat test numbers... see my blog for details... my daughter was misdiagnosed because of a high normal number and mild case.
<br />
<br />Insist on genetic testing to get the complete answer ... ask for FULL testing, including looking for ALL 1581 genes, not just 89 or so (typically done because it's much cheaper)
<br />
<br />My other piece of advise... stay here, hang out and learn !
 
O

OperaMama

New member
My boy was diagnosed a year and a half ago when he was just four-- You definitely feel numb for a year or so but also ready to learn everything and galvinized (sp?!) to do your darnedest to fight the most negative of the statistics. Which, if you read a lot on this board, you'll see a lot of people are doing so well. There's a lot of hope. But you do still get to have that maternal reaction.

We're all here for you!
 
O

OperaMama

New member
My boy was diagnosed a year and a half ago when he was just four-- You definitely feel numb for a year or so but also ready to learn everything and galvinized (sp?!) to do your darnedest to fight the most negative of the statistics. Which, if you read a lot on this board, you'll see a lot of people are doing so well. There's a lot of hope. But you do still get to have that maternal reaction.

We're all here for you!
 
O

OperaMama

New member
My boy was diagnosed a year and a half ago when he was just four-- You definitely feel numb for a year or so but also ready to learn everything and galvinized (sp?!) to do your darnedest to fight the most negative of the statistics. Which, if you read a lot on this board, you'll see a lot of people are doing so well. There's a lot of hope. But you do still get to have that maternal reaction.

We're all here for you!
 
O

OperaMama

New member
My boy was diagnosed a year and a half ago when he was just four-- You definitely feel numb for a year or so but also ready to learn everything and galvinized (sp?!) to do your darnedest to fight the most negative of the statistics. Which, if you read a lot on this board, you'll see a lot of people are doing so well. There's a lot of hope. But you do still get to have that maternal reaction.

We're all here for you!
 
O

OperaMama

New member
My boy was diagnosed a year and a half ago when he was just four-- You definitely feel numb for a year or so but also ready to learn everything and galvinized (sp?!) to do your darnedest to fight the most negative of the statistics. Which, if you read a lot on this board, you'll see a lot of people are doing so well. There's a lot of hope. But you do still get to have that maternal reaction.

We're all here for you!
 
J

JennyCoulon

New member
<img src="i/expressions/face-icon-small-sad.gif" border="0"> Sorry to hear about the news; both of my boys were diagnosed early but it didn't make the news any better. My oldest who is now 8 was diagnosed right after birth but we still didn't what CF was. I was so distraught and all I could think about is "my child is going to die". I was so wrong, my boys are both very healthy thanks God. I know that it is very hard to hear those words but it does get better. I truly believe that it is very important to have friends and family that you can talk to, good doctors to answer your questions and faith. I truly believe that you are only given what GOD knows that you can handle. Hope things get better.
 
J

JennyCoulon

New member
<img src="i/expressions/face-icon-small-sad.gif" border="0"> Sorry to hear about the news; both of my boys were diagnosed early but it didn't make the news any better. My oldest who is now 8 was diagnosed right after birth but we still didn't what CF was. I was so distraught and all I could think about is "my child is going to die". I was so wrong, my boys are both very healthy thanks God. I know that it is very hard to hear those words but it does get better. I truly believe that it is very important to have friends and family that you can talk to, good doctors to answer your questions and faith. I truly believe that you are only given what GOD knows that you can handle. Hope things get better.
 
J

JennyCoulon

New member
<img src="i/expressions/face-icon-small-sad.gif" border="0"> Sorry to hear about the news; both of my boys were diagnosed early but it didn't make the news any better. My oldest who is now 8 was diagnosed right after birth but we still didn't what CF was. I was so distraught and all I could think about is "my child is going to die". I was so wrong, my boys are both very healthy thanks God. I know that it is very hard to hear those words but it does get better. I truly believe that it is very important to have friends and family that you can talk to, good doctors to answer your questions and faith. I truly believe that you are only given what GOD knows that you can handle. Hope things get better.
 
J

JennyCoulon

New member
<img src="i/expressions/face-icon-small-sad.gif" border="0"> Sorry to hear about the news; both of my boys were diagnosed early but it didn't make the news any better. My oldest who is now 8 was diagnosed right after birth but we still didn't what CF was. I was so distraught and all I could think about is "my child is going to die". I was so wrong, my boys are both very healthy thanks God. I know that it is very hard to hear those words but it does get better. I truly believe that it is very important to have friends and family that you can talk to, good doctors to answer your questions and faith. I truly believe that you are only given what GOD knows that you can handle. Hope things get better.
 
J

JennyCoulon

New member
<img src="i/expressions/face-icon-small-sad.gif" border="0"> Sorry to hear about the news; both of my boys were diagnosed early but it didn't make the news any better. My oldest who is now 8 was diagnosed right after birth but we still didn't what CF was. I was so distraught and all I could think about is "my child is going to die". I was so wrong, my boys are both very healthy thanks God. I know that it is very hard to hear those words but it does get better. I truly believe that it is very important to have friends and family that you can talk to, good doctors to answer your questions and faith. I truly believe that you are only given what GOD knows that you can handle. Hope things get better.
 
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