No diagnosis.....just questions

[Stormywen]

My son is almost 16 months old. He was born 7 weeks early, currently has a feeding tube (hoping to get it out this month), has a history of asthma, chest colds & pneumonia. He takes lactulose for constipation issues but I know that can be a side effect of G-tube feedings as well.
He recently had ear tubes placed, adenoids out and his trachea scoped with a camera. When they scoped his trachea there was white secretions that they cultured and sent to the lab. Today I asked if anything grew from that culture and they said that it was a certain bacteria (started with an "S" sound....really wish I wrote it down) and that it was common in patients with CF. She then asked if he'd ever been tested. He had a sweat test done when he was younger that came back negative.
Should I even asked to have him tested again? I thought a false negative was rare but after reading some posts here it sounds like they're aren't as rare as I thought.
Wendy

 

[Stormywen]

My son is almost 16 months old. He was born 7 weeks early, currently has a feeding tube (hoping to get it out this month), has a history of asthma, chest colds & pneumonia. He takes lactulose for constipation issues but I know that can be a side effect of G-tube feedings as well.
He recently had ear tubes placed, adenoids out and his trachea scoped with a camera. When they scoped his trachea there was white secretions that they cultured and sent to the lab. Today I asked if anything grew from that culture and they said that it was a certain bacteria (started with an "S" sound....really wish I wrote it down) and that it was common in patients with CF. She then asked if he'd ever been tested. He had a sweat test done when he was younger that came back negative.
Should I even asked to have him tested again? I thought a false negative was rare but after reading some posts here it sounds like they're aren't as rare as I thought.
Wendy

 

[Stormywen]

My son is almost 16 months old. He was born 7 weeks early, currently has a feeding tube (hoping to get it out this month), has a history of asthma, chest colds & pneumonia. He takes lactulose for constipation issues but I know that can be a side effect of G-tube feedings as well.
<br /> He recently had ear tubes placed, adenoids out and his trachea scoped with a camera. When they scoped his trachea there was white secretions that they cultured and sent to the lab. Today I asked if anything grew from that culture and they said that it was a certain bacteria (started with an "S" sound....really wish I wrote it down) and that it was common in patients with CF. She then asked if he'd ever been tested. He had a sweat test done when he was younger that came back negative.
<br /> Should I even asked to have him tested again? I thought a false negative was rare but after reading some posts here it sounds like they're aren't as rare as I thought.
<br /> Wendy

 

[JORDYSMOM]

Hello & welcome. I'm sorry your son is struggling. There are many people here with negative sweat test results who have CF. Sweat test are unreliable, especially in babies.

I'm surprised that with all of the symptoms your child is exhibiting, and considering the CF bug that he is now culturing, which is probably Psuedonomas, that they haven't just ordered the Ambry full panel genetic test. I think you should get your son to the nearest certified CF clinic.

Keep us posted.

Stacey

 

[JORDYSMOM]

Hello & welcome. I'm sorry your son is struggling. There are many people here with negative sweat test results who have CF. Sweat test are unreliable, especially in babies.

I'm surprised that with all of the symptoms your child is exhibiting, and considering the CF bug that he is now culturing, which is probably Psuedonomas, that they haven't just ordered the Ambry full panel genetic test. I think you should get your son to the nearest certified CF clinic.

Keep us posted.

Stacey

 

[JORDYSMOM]

Hello & welcome. I'm sorry your son is struggling. There are many people here with negative sweat test results who have CF. Sweat test are unreliable, especially in babies.
<br />
<br />I'm surprised that with all of the symptoms your child is exhibiting, and considering the CF bug that he is now culturing, which is probably Psuedonomas, that they haven't just ordered the Ambry full panel genetic test. I think you should get your son to the nearest certified CF clinic.
<br />
<br />Keep us posted.
<br />
<br />Stacey
<br />
<br />

 

[AbsintheMinded]

I would ask for a blood test AND another sweat test. If the defective gene isn't one of the known ones it can make a blood diagnosis more difficult, but chances are good at least one of the defects would be known. Another sweat test is a good idea at this point too. Bless you and your son and I hope you get some answers soon.

 

[AbsintheMinded]

I would ask for a blood test AND another sweat test. If the defective gene isn't one of the known ones it can make a blood diagnosis more difficult, but chances are good at least one of the defects would be known. Another sweat test is a good idea at this point too. Bless you and your son and I hope you get some answers soon.

 

[AbsintheMinded]

I would ask for a blood test AND another sweat test. If the defective gene isn't one of the known ones it can make a blood diagnosis more difficult, but chances are good at least one of the defects would be known. Another sweat test is a good idea at this point too. Bless you and your son and I hope you get some answers soon.

 

[peter]

Hi, welcome to this site. You are in the right place, even if Cf testing is negative. people on this site know what to ask doctors and also what test results mean. I'm a healthcare practitioner myself and can assure you medical care is not standard so you are the advocate. Perhaps if you mention what state you are in others on the site can PM(private message) you of their perceptions. Anyway, always trust your "gut" and question everything you don't understand. Never be cowd by "medical" professionals. You are the safety net. Hopefully you'll connect to someone on this site from your area and get some PM going. You will always be welcome here though.
Best of luck
Peter

 

[peter]

Hi, welcome to this site. You are in the right place, even if Cf testing is negative. people on this site know what to ask doctors and also what test results mean. I'm a healthcare practitioner myself and can assure you medical care is not standard so you are the advocate. Perhaps if you mention what state you are in others on the site can PM(private message) you of their perceptions. Anyway, always trust your "gut" and question everything you don't understand. Never be cowd by "medical" professionals. You are the safety net. Hopefully you'll connect to someone on this site from your area and get some PM going. You will always be welcome here though.
Best of luck
Peter

 

[peter]

Hi, welcome to this site. You are in the right place, even if Cf testing is negative. people on this site know what to ask doctors and also what test results mean. I'm a healthcare practitioner myself and can assure you medical care is not standard so you are the advocate. Perhaps if you mention what state you are in others on the site can PM(private message) you of their perceptions. Anyway, always trust your "gut" and question everything you don't understand. Never be cowd by "medical" professionals. You are the safety net. Hopefully you'll connect to someone on this site from your area and get some PM going. You will always be welcome here though.
<br />Best of luck
<br />Peter

 

[jpetersen]

I concur with everyone else. There are just so many mutations and thus combinations of mutations, that sweat tests cannot be relied on any more than saying that someone doesn't have CF because they don't need enzymes or weren't born with meconium ileus. Time for a full genetic panel.

 

[jpetersen]

I concur with everyone else. There are just so many mutations and thus combinations of mutations, that sweat tests cannot be relied on any more than saying that someone doesn't have CF because they don't need enzymes or weren't born with meconium ileus. Time for a full genetic panel.

 

[jpetersen]

I concur with everyone else. There are just so many mutations and thus combinations of mutations, that sweat tests cannot be relied on any more than saying that someone doesn't have CF because they don't need enzymes or weren't born with meconium ileus. Time for a full genetic panel.

 

[Ratatosk]

I would really encourage you to pursue more extensive testing. Several of your child's symptoms sound similar to others. A friend of mine has a daughter who was diagnosed ag 18 months. She had lots of respiratory and constipation issues. Their local doctor ordered testing to rule out CF.

DS had a normal sweat test; however, his basic cf panel came back as CF. I recently read an article that there are over 1750 identified CF mutations.

I hope you get some answers soon.

 

[Ratatosk]

I would really encourage you to pursue more extensive testing. Several of your child's symptoms sound similar to others. A friend of mine has a daughter who was diagnosed ag 18 months. She had lots of respiratory and constipation issues. Their local doctor ordered testing to rule out CF.

DS had a normal sweat test; however, his basic cf panel came back as CF. I recently read an article that there are over 1750 identified CF mutations.

I hope you get some answers soon.

 

[Ratatosk]

I would really encourage you to pursue more extensive testing. Several of your child's symptoms sound similar to others. A friend of mine has a daughter who was diagnosed ag 18 months. She had lots of respiratory and constipation issues. Their local doctor ordered testing to rule out CF.
<br />
<br />DS had a normal sweat test; however, his basic cf panel came back as CF. I recently read an article that there are over 1750 identified CF mutations.
<br />
<br />I hope you get some answers soon.

 

[Stormywen]

I'm actually in Spokane Washington and did see that there is a CF clinic at one of our local hospitals. Good to know it exists in case we need one!

 

[Stormywen]

I'm actually in Spokane Washington and did see that there is a CF clinic at one of our local hospitals. Good to know it exists in case we need one!