Maybe CF?

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karismom

New member
Hi I read your post, my name is Lisa and i have 2 daughters w/cf. does your baby have digestive problems? like his food goes through undigested and does he taste REALLY salty? i defenitely think he needs to be tested! GOD BLESS YOU. and remember, if he does, IT IS NOT NECESSARILY A DEATH SENTENCE! just take it ONE DAY AT A TIME! YOU WILL BE IN MY PRAYERS.

peace.

lisa <img src="i/expressions/rose.gif" border="0">
 
A

alteregojenny

New member
He was tested Monday, but since they ran a few other tests (bronchoscopy, gastroscopy with biopsy) I won't hear the results for about 5-7 days (all results at one time)...needless to say I am having a hard time waiting. However, the gastro doc gave us a set of pictures of the inside of his esophagus...what in the WORLD should I do with them? I almost laughed at her thought that I might want them....*shrug*
 
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alteregojenny

New member
He was tested Monday, but since they ran a few other tests (bronchoscopy, gastroscopy with biopsy) I won't hear the results for about 5-7 days (all results at one time)...needless to say I am having a hard time waiting. However, the gastro doc gave us a set of pictures of the inside of his esophagus...what in the WORLD should I do with them? I almost laughed at her thought that I might want them....*shrug*
 
A

alteregojenny

New member
He was tested Monday, but since they ran a few other tests (bronchoscopy, gastroscopy with biopsy) I won't hear the results for about 5-7 days (all results at one time)...needless to say I am having a hard time waiting. However, the gastro doc gave us a set of pictures of the inside of his esophagus...what in the WORLD should I do with them? I almost laughed at her thought that I might want them....*shrug*
 
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alteregojenny

New member
Well, the doctor called, and I was out, of course. My husband's message looked like this "Doctor ____ called, and she said baby A does not have CF (no test result numbers, he never bothered to ask) she says he has a bacteria in the lungs. Will need antibiotics for a month."

Now, when I asked him WHAT bacteria he had, DH only said "Oh, it started with var....yeah, it was var-something."

Then I called the doctor's office, but she was gone until tomorrow. *sighs* I am waiting until I hear the sweat test results before I do the happy dance....and I really want to know what lung bacteria starts with the var sound...anyone know?

Also, thank you all for all the useful information I've gotten. If it wasn't for you guys, I'd never even know to ask all the questions I have to ask!
 
A

alteregojenny

New member
Well, the doctor called, and I was out, of course. My husband's message looked like this "Doctor ____ called, and she said baby A does not have CF (no test result numbers, he never bothered to ask) she says he has a bacteria in the lungs. Will need antibiotics for a month."

Now, when I asked him WHAT bacteria he had, DH only said "Oh, it started with var....yeah, it was var-something."

Then I called the doctor's office, but she was gone until tomorrow. *sighs* I am waiting until I hear the sweat test results before I do the happy dance....and I really want to know what lung bacteria starts with the var sound...anyone know?

Also, thank you all for all the useful information I've gotten. If it wasn't for you guys, I'd never even know to ask all the questions I have to ask!
 
A

alteregojenny

New member
Well, the doctor called, and I was out, of course. My husband's message looked like this "Doctor ____ called, and she said baby A does not have CF (no test result numbers, he never bothered to ask) she says he has a bacteria in the lungs. Will need antibiotics for a month."

Now, when I asked him WHAT bacteria he had, DH only said "Oh, it started with var....yeah, it was var-something."

Then I called the doctor's office, but she was gone until tomorrow. *sighs* I am waiting until I hear the sweat test results before I do the happy dance....and I really want to know what lung bacteria starts with the var sound...anyone know?

Also, thank you all for all the useful information I've gotten. If it wasn't for you guys, I'd never even know to ask all the questions I have to ask!
 
C

clawson5104

New member
<img src="i/expressions/face-icon-small-happy.gif" border="0"> Dont cha just love those DH! mine nearly had a nervous breakdown when he had to take a call from our son's doc! let alone understand or write down anything she was trying to tell him. needless to say he called me on cell with a return number.......OFF THE CALLER ID......as if i can reach her at that number. they only have a billion phones there. and the number on CID is just one of the extensions in the building...lol. and when i got in touch with doc, she said she gave up trying to tell him anything or ask how our son was doing, he didn't know anything....lol.
donno any answers to ur question though. hope u the best in the meantime, with results and all.
 
C

clawson5104

New member
<img src="i/expressions/face-icon-small-happy.gif" border="0"> Dont cha just love those DH! mine nearly had a nervous breakdown when he had to take a call from our son's doc! let alone understand or write down anything she was trying to tell him. needless to say he called me on cell with a return number.......OFF THE CALLER ID......as if i can reach her at that number. they only have a billion phones there. and the number on CID is just one of the extensions in the building...lol. and when i got in touch with doc, she said she gave up trying to tell him anything or ask how our son was doing, he didn't know anything....lol.
donno any answers to ur question though. hope u the best in the meantime, with results and all.
 
C

clawson5104

New member
<img src="i/expressions/face-icon-small-happy.gif" border="0"> Dont cha just love those DH! mine nearly had a nervous breakdown when he had to take a call from our son's doc! let alone understand or write down anything she was trying to tell him. needless to say he called me on cell with a return number.......OFF THE CALLER ID......as if i can reach her at that number. they only have a billion phones there. and the number on CID is just one of the extensions in the building...lol. and when i got in touch with doc, she said she gave up trying to tell him anything or ask how our son was doing, he didn't know anything....lol.
donno any answers to ur question though. hope u the best in the meantime, with results and all.
 
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NoExcuses

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


I am waiting until I hear the sweat test results before I do the happy dance....</end quote></div>


Be careful.... many people with CF have "normal" sweat tests.....

I would do the happy dance after an all clear from the Ambry Amplified genetic test
 
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NoExcuses

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


I am waiting until I hear the sweat test results before I do the happy dance....</end quote></div>


Be careful.... many people with CF have "normal" sweat tests.....

I would do the happy dance after an all clear from the Ambry Amplified genetic test
 
N

NoExcuses

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


I am waiting until I hear the sweat test results before I do the happy dance....</end quote></div>


Be careful.... many people with CF have "normal" sweat tests.....

I would do the happy dance after an all clear from the Ambry Amplified genetic test
 
A

alteregojenny

New member
I'm not exactly happy with the way in which they decided to do the genetic test...they only tested for the top 25 mutations. The doctor obviously isn't listening to me. *frowns* Especially since she told my husband her theory on my son's apnea this morning. She thinks "It was caused by pneumonia." and prescribed antibiotics (that was the weird long-sounding bacteria my DH couldn't remember *rolls eyes*) Let's not forget it's been going on for 10 months now, and he's been on several courses of antibiotics (for various lung-related things)that have not eradicated it (the apnea)yet. I guess that's what you get when they send you to a GI doctor for a pulmonary problem....I want to see a real pulmonologist, and get a full panel genetic test for my son. I need to talk to the pediatrician about it, but she wants to wait for the PH probe results, because her pet theory is that it's all related to his GERD. I guess I am feeling defeated today. All I do know for certain is that if he does have CF, which I really still think might be possible, it's not one of the "top 25", which means basically nothing.
 
A

alteregojenny

New member
I'm not exactly happy with the way in which they decided to do the genetic test...they only tested for the top 25 mutations. The doctor obviously isn't listening to me. *frowns* Especially since she told my husband her theory on my son's apnea this morning. She thinks "It was caused by pneumonia." and prescribed antibiotics (that was the weird long-sounding bacteria my DH couldn't remember *rolls eyes*) Let's not forget it's been going on for 10 months now, and he's been on several courses of antibiotics (for various lung-related things)that have not eradicated it (the apnea)yet. I guess that's what you get when they send you to a GI doctor for a pulmonary problem....I want to see a real pulmonologist, and get a full panel genetic test for my son. I need to talk to the pediatrician about it, but she wants to wait for the PH probe results, because her pet theory is that it's all related to his GERD. I guess I am feeling defeated today. All I do know for certain is that if he does have CF, which I really still think might be possible, it's not one of the "top 25", which means basically nothing.
 
A

alteregojenny

New member
I'm not exactly happy with the way in which they decided to do the genetic test...they only tested for the top 25 mutations. The doctor obviously isn't listening to me. *frowns* Especially since she told my husband her theory on my son's apnea this morning. She thinks "It was caused by pneumonia." and prescribed antibiotics (that was the weird long-sounding bacteria my DH couldn't remember *rolls eyes*) Let's not forget it's been going on for 10 months now, and he's been on several courses of antibiotics (for various lung-related things)that have not eradicated it (the apnea)yet. I guess that's what you get when they send you to a GI doctor for a pulmonary problem....I want to see a real pulmonologist, and get a full panel genetic test for my son. I need to talk to the pediatrician about it, but she wants to wait for the PH probe results, because her pet theory is that it's all related to his GERD. I guess I am feeling defeated today. All I do know for certain is that if he does have CF, which I really still think might be possible, it's not one of the "top 25", which means basically nothing.
 
N

NoExcuses

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

\ All I do know for certain is that if he does have CF, which I really still think might be possible, it's not one of the "top 25", which means basically nothing.</end quote></div>

I don't even know why that Top 25 test exists.

If you're going to test for genes, why not test for all? Otherwise, you might be missing something, as you said.

Keep pushing... almost everyone encounters what you're describing. I promise. It's really unbelievable ....

Keep your head up
 
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