worried mother

[NoExcuses]

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

I figure if the sweat test comes back with a number like 10, we should be in the clear, right?</end quote>


I think regardless you should get the genetic test.

There are just too many people who have low sweat tests and have CF.

While you're at the clinic, just get some blood drawn and send it off to Ambry. It's not a big deal and it will eliminate CF if it comes back negative.

You should it regardless of the sweat test result. No matter what.

 

[NoExcuses]

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

I figure if the sweat test comes back with a number like 10, we should be in the clear, right?</end quote>


I think regardless you should get the genetic test.

There are just too many people who have low sweat tests and have CF.

While you're at the clinic, just get some blood drawn and send it off to Ambry. It's not a big deal and it will eliminate CF if it comes back negative.

You should it regardless of the sweat test result. No matter what.

 

[Alyssa]

Sakasuka's advice is best I'm sure, but most of the people I have read/heard about with "normal sweat test numbers, but DO have CF" are usually in the 30's, sometimes 20's.

 

[Alyssa]

Sakasuka's advice is best I'm sure, but most of the people I have read/heard about with "normal sweat test numbers, but DO have CF" are usually in the 30's, sometimes 20's.

 

[Alyssa]

Sakasuka's advice is best I'm sure, but most of the people I have read/heard about with "normal sweat test numbers, but DO have CF" are usually in the 30's, sometimes 20's.

 

[Alyssa]

Sakasuka's advice is best I'm sure, but most of the people I have read/heard about with "normal sweat test numbers, but DO have CF" are usually in the 30's, sometimes 20's.

 

[Alyssa]

Sakasuka's advice is best I'm sure, but most of the people I have read/heard about with "normal sweat test numbers, but DO have CF" are usually in the 30's, sometimes 20's.

 

[Alyssa]

Sakasuka's advice is best I'm sure, but most of the people I have read/heard about with "normal sweat test numbers, but DO have CF" are usually in the 30's, sometimes 20's.

 

[amber682]

Try not to worry to much (hard, I know). There's a very good chance your son just has asthma. My son had RSV as a baby and was hospitalized for quite a while. A lot of the info they gave me to read said that kids who have a bad bout with RSV (requiring hospitalization) have a higher risk of getting asthma. Plus, allergies can exacerbate asthma symptoms. Your son could have some seasonal allergies that are affecting his asthma, and that's why he's seeming a little worse now. And it's a good sign that the asthma meds the doctors put your son on are helping. Plus he tested negative through the newborn screening.

It's great that the doctor is ordering the sweat test just to be sure. I've seen so many parents on here who are so afraid their child may have CF because they seem to have all the symptoms, and the doctors just won't test them. Good luck and please come back and let us know how it went!

 

[amber682]

Try not to worry to much (hard, I know). There's a very good chance your son just has asthma. My son had RSV as a baby and was hospitalized for quite a while. A lot of the info they gave me to read said that kids who have a bad bout with RSV (requiring hospitalization) have a higher risk of getting asthma. Plus, allergies can exacerbate asthma symptoms. Your son could have some seasonal allergies that are affecting his asthma, and that's why he's seeming a little worse now. And it's a good sign that the asthma meds the doctors put your son on are helping. Plus he tested negative through the newborn screening.

It's great that the doctor is ordering the sweat test just to be sure. I've seen so many parents on here who are so afraid their child may have CF because they seem to have all the symptoms, and the doctors just won't test them. Good luck and please come back and let us know how it went!

 

[amber682]

Try not to worry to much (hard, I know). There's a very good chance your son just has asthma. My son had RSV as a baby and was hospitalized for quite a while. A lot of the info they gave me to read said that kids who have a bad bout with RSV (requiring hospitalization) have a higher risk of getting asthma. Plus, allergies can exacerbate asthma symptoms. Your son could have some seasonal allergies that are affecting his asthma, and that's why he's seeming a little worse now. And it's a good sign that the asthma meds the doctors put your son on are helping. Plus he tested negative through the newborn screening.

It's great that the doctor is ordering the sweat test just to be sure. I've seen so many parents on here who are so afraid their child may have CF because they seem to have all the symptoms, and the doctors just won't test them. Good luck and please come back and let us know how it went!

 

[amber682]

Try not to worry to much (hard, I know). There's a very good chance your son just has asthma. My son had RSV as a baby and was hospitalized for quite a while. A lot of the info they gave me to read said that kids who have a bad bout with RSV (requiring hospitalization) have a higher risk of getting asthma. Plus, allergies can exacerbate asthma symptoms. Your son could have some seasonal allergies that are affecting his asthma, and that's why he's seeming a little worse now. And it's a good sign that the asthma meds the doctors put your son on are helping. Plus he tested negative through the newborn screening.

It's great that the doctor is ordering the sweat test just to be sure. I've seen so many parents on here who are so afraid their child may have CF because they seem to have all the symptoms, and the doctors just won't test them. Good luck and please come back and let us know how it went!

 

[amber682]

Try not to worry to much (hard, I know). There's a very good chance your son just has asthma. My son had RSV as a baby and was hospitalized for quite a while. A lot of the info they gave me to read said that kids who have a bad bout with RSV (requiring hospitalization) have a higher risk of getting asthma. Plus, allergies can exacerbate asthma symptoms. Your son could have some seasonal allergies that are affecting his asthma, and that's why he's seeming a little worse now. And it's a good sign that the asthma meds the doctors put your son on are helping. Plus he tested negative through the newborn screening.

It's great that the doctor is ordering the sweat test just to be sure. I've seen so many parents on here who are so afraid their child may have CF because they seem to have all the symptoms, and the doctors just won't test them. Good luck and please come back and let us know how it went!

 

[amber682]

Try not to worry to much (hard, I know). There's a very good chance your son just has asthma. My son had RSV as a baby and was hospitalized for quite a while. A lot of the info they gave me to read said that kids who have a bad bout with RSV (requiring hospitalization) have a higher risk of getting asthma. Plus, allergies can exacerbate asthma symptoms. Your son could have some seasonal allergies that are affecting his asthma, and that's why he's seeming a little worse now. And it's a good sign that the asthma meds the doctors put your son on are helping. Plus he tested negative through the newborn screening.

It's great that the doctor is ordering the sweat test just to be sure. I've seen so many parents on here who are so afraid their child may have CF because they seem to have all the symptoms, and the doctors just won't test them. Good luck and please come back and let us know how it went!

 

[Mommafirst]

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

Heather - can you tell me a little about how your daughter was first diagnosed and how she has been doing since then?



Thanks!

Nora</end quote></div>


Sure Nora!!

My daughter was born with Meconium Illeus (a bowel obstruction). When they discovered it, they mentioned CF as a possibility but said they'd wait a few months and then test her because she seemed "too healthy" to have CF. They forgot to mention that something like 90% of all meconium illeus is CF related. So despite my doctors all saying she was doing too well to have CF, I insisted on the sweat test and they didn't resist. She sweated a 53. This is a pretty high borderline, so we ran basic genetics. They found one mutation and said they were pretty sure she was just a carrier, but we ran the full Ambry to make sure. They found a VERY rare (6 known diagnosed patients) mutation after 8 weeks of the blood being at Ambry. As it turns out, the meconium illeus was a blessing in disguise. Without it we would have never discovered the CF this early for sure. Our state just started newborn screening, but our doctor said she most likely would not have been picked up on it.

She is doing pretty well. She in pancreatic sufficient, but has still had a lot of weight gain issues, so she takes enzymes anyway. She was hospitalized once, it started as a tummy bug, but they thought they heard some chest rattling so decided to do a tune up. Before the hospitalization she had a few chest colds that were responsive to antibiotics, but since the hospital she hasn't been sick. Now that we are into the warm weather I am hopeful that she will get through the summer without any issues.

Overall, she is a normal 16 month old little girl. Her life is complicated by breathing treatments, medicines, and chest physical therapy. But we'll do whatever we have to, to keep her lungs healthy.

If you have any other questions, feel free to ask here or you can PM me.

 

[Mommafirst]

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

Heather - can you tell me a little about how your daughter was first diagnosed and how she has been doing since then?



Thanks!

Nora</end quote></div>


Sure Nora!!

My daughter was born with Meconium Illeus (a bowel obstruction). When they discovered it, they mentioned CF as a possibility but said they'd wait a few months and then test her because she seemed "too healthy" to have CF. They forgot to mention that something like 90% of all meconium illeus is CF related. So despite my doctors all saying she was doing too well to have CF, I insisted on the sweat test and they didn't resist. She sweated a 53. This is a pretty high borderline, so we ran basic genetics. They found one mutation and said they were pretty sure she was just a carrier, but we ran the full Ambry to make sure. They found a VERY rare (6 known diagnosed patients) mutation after 8 weeks of the blood being at Ambry. As it turns out, the meconium illeus was a blessing in disguise. Without it we would have never discovered the CF this early for sure. Our state just started newborn screening, but our doctor said she most likely would not have been picked up on it.

She is doing pretty well. She in pancreatic sufficient, but has still had a lot of weight gain issues, so she takes enzymes anyway. She was hospitalized once, it started as a tummy bug, but they thought they heard some chest rattling so decided to do a tune up. Before the hospitalization she had a few chest colds that were responsive to antibiotics, but since the hospital she hasn't been sick. Now that we are into the warm weather I am hopeful that she will get through the summer without any issues.

Overall, she is a normal 16 month old little girl. Her life is complicated by breathing treatments, medicines, and chest physical therapy. But we'll do whatever we have to, to keep her lungs healthy.

If you have any other questions, feel free to ask here or you can PM me.

 

[Mommafirst]

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

Heather - can you tell me a little about how your daughter was first diagnosed and how she has been doing since then?



Thanks!

Nora</end quote></div>


Sure Nora!!

My daughter was born with Meconium Illeus (a bowel obstruction). When they discovered it, they mentioned CF as a possibility but said they'd wait a few months and then test her because she seemed "too healthy" to have CF. They forgot to mention that something like 90% of all meconium illeus is CF related. So despite my doctors all saying she was doing too well to have CF, I insisted on the sweat test and they didn't resist. She sweated a 53. This is a pretty high borderline, so we ran basic genetics. They found one mutation and said they were pretty sure she was just a carrier, but we ran the full Ambry to make sure. They found a VERY rare (6 known diagnosed patients) mutation after 8 weeks of the blood being at Ambry. As it turns out, the meconium illeus was a blessing in disguise. Without it we would have never discovered the CF this early for sure. Our state just started newborn screening, but our doctor said she most likely would not have been picked up on it.

She is doing pretty well. She in pancreatic sufficient, but has still had a lot of weight gain issues, so she takes enzymes anyway. She was hospitalized once, it started as a tummy bug, but they thought they heard some chest rattling so decided to do a tune up. Before the hospitalization she had a few chest colds that were responsive to antibiotics, but since the hospital she hasn't been sick. Now that we are into the warm weather I am hopeful that she will get through the summer without any issues.

Overall, she is a normal 16 month old little girl. Her life is complicated by breathing treatments, medicines, and chest physical therapy. But we'll do whatever we have to, to keep her lungs healthy.

If you have any other questions, feel free to ask here or you can PM me.

 

[Mommafirst]

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

Heather - can you tell me a little about how your daughter was first diagnosed and how she has been doing since then?



Thanks!

Nora</end quote></div>


Sure Nora!!

My daughter was born with Meconium Illeus (a bowel obstruction). When they discovered it, they mentioned CF as a possibility but said they'd wait a few months and then test her because she seemed "too healthy" to have CF. They forgot to mention that something like 90% of all meconium illeus is CF related. So despite my doctors all saying she was doing too well to have CF, I insisted on the sweat test and they didn't resist. She sweated a 53. This is a pretty high borderline, so we ran basic genetics. They found one mutation and said they were pretty sure she was just a carrier, but we ran the full Ambry to make sure. They found a VERY rare (6 known diagnosed patients) mutation after 8 weeks of the blood being at Ambry. As it turns out, the meconium illeus was a blessing in disguise. Without it we would have never discovered the CF this early for sure. Our state just started newborn screening, but our doctor said she most likely would not have been picked up on it.

She is doing pretty well. She in pancreatic sufficient, but has still had a lot of weight gain issues, so she takes enzymes anyway. She was hospitalized once, it started as a tummy bug, but they thought they heard some chest rattling so decided to do a tune up. Before the hospitalization she had a few chest colds that were responsive to antibiotics, but since the hospital she hasn't been sick. Now that we are into the warm weather I am hopeful that she will get through the summer without any issues.

Overall, she is a normal 16 month old little girl. Her life is complicated by breathing treatments, medicines, and chest physical therapy. But we'll do whatever we have to, to keep her lungs healthy.

If you have any other questions, feel free to ask here or you can PM me.

 

[Mommafirst]

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

Heather - can you tell me a little about how your daughter was first diagnosed and how she has been doing since then?



Thanks!

Nora</end quote>


Sure Nora!!

My daughter was born with Meconium Illeus (a bowel obstruction). When they discovered it, they mentioned CF as a possibility but said they'd wait a few months and then test her because she seemed "too healthy" to have CF. They forgot to mention that something like 90% of all meconium illeus is CF related. So despite my doctors all saying she was doing too well to have CF, I insisted on the sweat test and they didn't resist. She sweated a 53. This is a pretty high borderline, so we ran basic genetics. They found one mutation and said they were pretty sure she was just a carrier, but we ran the full Ambry to make sure. They found a VERY rare (6 known diagnosed patients) mutation after 8 weeks of the blood being at Ambry. As it turns out, the meconium illeus was a blessing in disguise. Without it we would have never discovered the CF this early for sure. Our state just started newborn screening, but our doctor said she most likely would not have been picked up on it.

She is doing pretty well. She in pancreatic sufficient, but has still had a lot of weight gain issues, so she takes enzymes anyway. She was hospitalized once, it started as a tummy bug, but they thought they heard some chest rattling so decided to do a tune up. Before the hospitalization she had a few chest colds that were responsive to antibiotics, but since the hospital she hasn't been sick. Now that we are into the warm weather I am hopeful that she will get through the summer without any issues.

Overall, she is a normal 16 month old little girl. Her life is complicated by breathing treatments, medicines, and chest physical therapy. But we'll do whatever we have to, to keep her lungs healthy.

If you have any other questions, feel free to ask here or you can PM me.

 

[Mommafirst]

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

Heather - can you tell me a little about how your daughter was first diagnosed and how she has been doing since then?



Thanks!

Nora</end quote>


Sure Nora!!

My daughter was born with Meconium Illeus (a bowel obstruction). When they discovered it, they mentioned CF as a possibility but said they'd wait a few months and then test her because she seemed "too healthy" to have CF. They forgot to mention that something like 90% of all meconium illeus is CF related. So despite my doctors all saying she was doing too well to have CF, I insisted on the sweat test and they didn't resist. She sweated a 53. This is a pretty high borderline, so we ran basic genetics. They found one mutation and said they were pretty sure she was just a carrier, but we ran the full Ambry to make sure. They found a VERY rare (6 known diagnosed patients) mutation after 8 weeks of the blood being at Ambry. As it turns out, the meconium illeus was a blessing in disguise. Without it we would have never discovered the CF this early for sure. Our state just started newborn screening, but our doctor said she most likely would not have been picked up on it.

She is doing pretty well. She in pancreatic sufficient, but has still had a lot of weight gain issues, so she takes enzymes anyway. She was hospitalized once, it started as a tummy bug, but they thought they heard some chest rattling so decided to do a tune up. Before the hospitalization she had a few chest colds that were responsive to antibiotics, but since the hospital she hasn't been sick. Now that we are into the warm weather I am hopeful that she will get through the summer without any issues.

Overall, she is a normal 16 month old little girl. Her life is complicated by breathing treatments, medicines, and chest physical therapy. But we'll do whatever we have to, to keep her lungs healthy.

If you have any other questions, feel free to ask here or you can PM me.