Waiting for Answers-- VERY FRUSTRATED

[sorels]

Waiting for Answers-- What to ask doc tomorrow?

the truth is sweat chloride tests dont come cheap...U must demand that ur son get a sweat test and that CF is what ur particularly worried about....dont take no for an answer....my mom battled the same thing with me and I was finall diagnosed at 2 yrs old....i started showing symptoms of CF at birth..a sweat test is the only thin that can rule out CF for sure....be firm with the next doc u talk to and let them know u mean business.....thew will try to look for everything else in the medical book before the give a sweat chloride test....Im tellin demand it....and if the doc says anything off the subject....u get back on the subject and say there is nothing else that u want....they have to listen to....the problem is that most parents r left in the dark about how they can fin out if there kid has CF....so now u know what to ask for....get'r done lol....good luck....DAN <img src="i/expressions/face-icon-small-smile.gif" border="0"> CF patient

 

[damiensmom]

Waiting for Answers-- What to ask doc tomorrow?

Go to the heart of the matter so to speak. Damien my son had every test done at 2 weeks because the doc suspected cf. After a month of test we were sent home with a dx of no cf. I got a call 2 weeks later saying sorry the genetic blood panel came back he does have cf. there are false negatives. no false positives. you think with all thats going on it would have already been done.

 

[damiensmom]

Waiting for Answers-- What to ask doc tomorrow?

Go to the heart of the matter so to speak. Damien my son had every test done at 2 weeks because the doc suspected cf. After a month of test we were sent home with a dx of no cf. I got a call 2 weeks later saying sorry the genetic blood panel came back he does have cf. there are false negatives. no false positives. you think with all thats going on it would have already been done.

 

[damiensmom]

Waiting for Answers-- What to ask doc tomorrow?

Go to the heart of the matter so to speak. Damien my son had every test done at 2 weeks because the doc suspected cf. After a month of test we were sent home with a dx of no cf. I got a call 2 weeks later saying sorry the genetic blood panel came back he does have cf. there are false negatives. no false positives. you think with all thats going on it would have already been done.

 

[amber682]

Waiting for Answers-- What to ask doc tomorrow?

<div class="FTQUOTE"><begin quote>He wants to rule out reflux (kid has never had any problems before and does not even fit the profile for a reflux kid!!??) </end quote></div>

It doesn't make sense to me that the doctor wants to rule out reflux. Tons of people with CF have reflux issues, especially children!

Hopefully the sweat test will give you a diagnosis. Or maybe the genetic test. Even if it only picks up one mutation, maybe that'll give you the ammo to get them to do a more extensive test.

Those symptoms you listed would make me think CF. Sinus problems and polyps are very common problems with CFers. And hospitalized 11 times for pneumonia in 2 years! Plus seemingly uncontrollable asthma symptoms! I think these docs should have suspected CF sooner! And don't let them tell you it's not a possibility because he doesn't have trouble with weight, because not all CFers are pancreatic insufficient.

It makes me angry because I know what it was like when my son was so sick and on a vent and in nutritional failure and I thought he was going to die and I knew it was CF (I knew I was a carrier), but the doctors would not just do the simple sweat test. It took them 4 weeks of testing everything else under the son first while my son got sicker and sicker.

How about the bronch you mentioned in the original post? Did he have that yet? That could point to CF if he's growing certain bacteria in there that are common in people with CF that people without CF don't usually have in their lungs, like staph or pseudomonas. I hope everything went well! Keep us posted and I hope your son is feeling better and that you finally get an answer.

 

[amber682]

Waiting for Answers-- What to ask doc tomorrow?

<div class="FTQUOTE"><begin quote>He wants to rule out reflux (kid has never had any problems before and does not even fit the profile for a reflux kid!!??) </end quote></div>

It doesn't make sense to me that the doctor wants to rule out reflux. Tons of people with CF have reflux issues, especially children!

Hopefully the sweat test will give you a diagnosis. Or maybe the genetic test. Even if it only picks up one mutation, maybe that'll give you the ammo to get them to do a more extensive test.

Those symptoms you listed would make me think CF. Sinus problems and polyps are very common problems with CFers. And hospitalized 11 times for pneumonia in 2 years! Plus seemingly uncontrollable asthma symptoms! I think these docs should have suspected CF sooner! And don't let them tell you it's not a possibility because he doesn't have trouble with weight, because not all CFers are pancreatic insufficient.

It makes me angry because I know what it was like when my son was so sick and on a vent and in nutritional failure and I thought he was going to die and I knew it was CF (I knew I was a carrier), but the doctors would not just do the simple sweat test. It took them 4 weeks of testing everything else under the son first while my son got sicker and sicker.

How about the bronch you mentioned in the original post? Did he have that yet? That could point to CF if he's growing certain bacteria in there that are common in people with CF that people without CF don't usually have in their lungs, like staph or pseudomonas. I hope everything went well! Keep us posted and I hope your son is feeling better and that you finally get an answer.

 

[amber682]

Waiting for Answers-- What to ask doc tomorrow?

<div class="FTQUOTE"><begin quote>He wants to rule out reflux (kid has never had any problems before and does not even fit the profile for a reflux kid!!??) </end quote></div>

It doesn't make sense to me that the doctor wants to rule out reflux. Tons of people with CF have reflux issues, especially children!

Hopefully the sweat test will give you a diagnosis. Or maybe the genetic test. Even if it only picks up one mutation, maybe that'll give you the ammo to get them to do a more extensive test.

Those symptoms you listed would make me think CF. Sinus problems and polyps are very common problems with CFers. And hospitalized 11 times for pneumonia in 2 years! Plus seemingly uncontrollable asthma symptoms! I think these docs should have suspected CF sooner! And don't let them tell you it's not a possibility because he doesn't have trouble with weight, because not all CFers are pancreatic insufficient.

It makes me angry because I know what it was like when my son was so sick and on a vent and in nutritional failure and I thought he was going to die and I knew it was CF (I knew I was a carrier), but the doctors would not just do the simple sweat test. It took them 4 weeks of testing everything else under the son first while my son got sicker and sicker.

How about the bronch you mentioned in the original post? Did he have that yet? That could point to CF if he's growing certain bacteria in there that are common in people with CF that people without CF don't usually have in their lungs, like staph or pseudomonas. I hope everything went well! Keep us posted and I hope your son is feeling better and that you finally get an answer.

 

[Alessia2dance]

Waiting for Answers-- What to ask doc tomorrow?

It does sound like possible cf to me but i'm not a dr. It took my mom 12 different docs to finally dx me. My advice would be to go to another doc and get alternative opinions. I'm sorry to hear about what you and poor son are going through. good luck. keep us posted

 

[Alessia2dance]

Waiting for Answers-- What to ask doc tomorrow?

It does sound like possible cf to me but i'm not a dr. It took my mom 12 different docs to finally dx me. My advice would be to go to another doc and get alternative opinions. I'm sorry to hear about what you and poor son are going through. good luck. keep us posted

 

[Alessia2dance]

Waiting for Answers-- What to ask doc tomorrow?

It does sound like possible cf to me but i'm not a dr. It took my mom 12 different docs to finally dx me. My advice would be to go to another doc and get alternative opinions. I'm sorry to hear about what you and poor son are going through. good luck. keep us posted

 

[loriz65]

Waiting for Answers-- What to ask doc tomorrow?

This topic makes me sick! Why do the doctors waste precious time in trying to find out what is wrong with a child when it is so obvious! 11 times for pneumonia... you'd think somebody with a doctors degree and the fact that they might read a medical journal once in a while might add one and one together! This absolutely infuriates me to no end! This child is 5 years old and so much time has been wasted! Joyfulheart, you want thoughts and advise... I personally would be screaming incompetance or finding another doctor.

Loriz65 Aunt/CF Child

 

[loriz65]

Waiting for Answers-- What to ask doc tomorrow?

This topic makes me sick! Why do the doctors waste precious time in trying to find out what is wrong with a child when it is so obvious! 11 times for pneumonia... you'd think somebody with a doctors degree and the fact that they might read a medical journal once in a while might add one and one together! This absolutely infuriates me to no end! This child is 5 years old and so much time has been wasted! Joyfulheart, you want thoughts and advise... I personally would be screaming incompetance or finding another doctor.

Loriz65 Aunt/CF Child

 

[loriz65]

Waiting for Answers-- What to ask doc tomorrow?

This topic makes me sick! Why do the doctors waste precious time in trying to find out what is wrong with a child when it is so obvious! 11 times for pneumonia... you'd think somebody with a doctors degree and the fact that they might read a medical journal once in a while might add one and one together! This absolutely infuriates me to no end! This child is 5 years old and so much time has been wasted! Joyfulheart, you want thoughts and advise... I personally would be screaming incompetance or finding another doctor.

Loriz65 Aunt/CF Child

 

[JoyfulHeart]

Waiting for Answers-- What to ask doc tomorrow?

Thanks for the advice. I'm more frustrated now.

Today we left the hospital after a bronchoscopy. Scar tissue was expected, given all his asthma/pneumonia issues. No sign of cancer or reflux (I told the doc that, so nanner nanner nanner!!! pbbbbbtttt! <img src="i/expressions/face-icon-small-happy.gif" border="0"> )

The opening to the lower left lung is abnormally small, which explains why when he gets pneumonia, that lung collapses-- the pneumonia could be making it swell, and then when it swells shut, it would obviously collapse. Ok. I get that.

BUT -- this told us NOTHING as to WHY he keeps getting sick!! AARGH!!!!

Doc sent lung tissue samples out to lab to see if there's any more info, but I'm not expecting much.

His sweat test was 15-- and was done at Children's in Dallas--I'm told that's a CF approved testing facility.

Anyone here test that low and still have CF????

The genetic testing the doc agreed to (after I nagged the poor man to death) only tests for 30 main mutations out of almost 1500-- I kinda see that as pointless, but what do I know? Test results due back in 2 weeks on that one.

I just have this gut feeling it's really CF, but nobody will listen to me. aarrgh.

 

[JoyfulHeart]

Waiting for Answers-- What to ask doc tomorrow?

Thanks for the advice. I'm more frustrated now.

Today we left the hospital after a bronchoscopy. Scar tissue was expected, given all his asthma/pneumonia issues. No sign of cancer or reflux (I told the doc that, so nanner nanner nanner!!! pbbbbbtttt! <img src="i/expressions/face-icon-small-happy.gif" border="0"> )

The opening to the lower left lung is abnormally small, which explains why when he gets pneumonia, that lung collapses-- the pneumonia could be making it swell, and then when it swells shut, it would obviously collapse. Ok. I get that.

BUT -- this told us NOTHING as to WHY he keeps getting sick!! AARGH!!!!

Doc sent lung tissue samples out to lab to see if there's any more info, but I'm not expecting much.

His sweat test was 15-- and was done at Children's in Dallas--I'm told that's a CF approved testing facility.

Anyone here test that low and still have CF????

The genetic testing the doc agreed to (after I nagged the poor man to death) only tests for 30 main mutations out of almost 1500-- I kinda see that as pointless, but what do I know? Test results due back in 2 weeks on that one.

I just have this gut feeling it's really CF, but nobody will listen to me. aarrgh.

 

[JoyfulHeart]

Waiting for Answers-- What to ask doc tomorrow?

Thanks for the advice. I'm more frustrated now.

Today we left the hospital after a bronchoscopy. Scar tissue was expected, given all his asthma/pneumonia issues. No sign of cancer or reflux (I told the doc that, so nanner nanner nanner!!! pbbbbbtttt! <img src="i/expressions/face-icon-small-happy.gif" border="0"> )

The opening to the lower left lung is abnormally small, which explains why when he gets pneumonia, that lung collapses-- the pneumonia could be making it swell, and then when it swells shut, it would obviously collapse. Ok. I get that.

BUT -- this told us NOTHING as to WHY he keeps getting sick!! AARGH!!!!

Doc sent lung tissue samples out to lab to see if there's any more info, but I'm not expecting much.

His sweat test was 15-- and was done at Children's in Dallas--I'm told that's a CF approved testing facility.

Anyone here test that low and still have CF????

The genetic testing the doc agreed to (after I nagged the poor man to death) only tests for 30 main mutations out of almost 1500-- I kinda see that as pointless, but what do I know? Test results due back in 2 weeks on that one.

I just have this gut feeling it's really CF, but nobody will listen to me. aarrgh.

 

[Momto3]

Waiting for Answers-- What to ask doc tomorrow?

Check into primary ciliary dyskinesia. It shares many symptoms with CF although the cause is totally different. Also, ask for immune deficiency testing. If he truelly has polyps in his sinuses, then I'd push for a full panel genetic testing for CF. Good luck!

 

[Momto3]

Waiting for Answers-- What to ask doc tomorrow?

Check into primary ciliary dyskinesia. It shares many symptoms with CF although the cause is totally different. Also, ask for immune deficiency testing. If he truelly has polyps in his sinuses, then I'd push for a full panel genetic testing for CF. Good luck!

 

[Momto3]

Waiting for Answers-- What to ask doc tomorrow?

Check into primary ciliary dyskinesia. It shares many symptoms with CF although the cause is totally different. Also, ask for immune deficiency testing. If he truelly has polyps in his sinuses, then I'd push for a full panel genetic testing for CF. Good luck!

 

[JoyfulHeart]

Waiting for Answers-- What to ask doc tomorrow?

We've gotten the immune testing. He's got a good memory to vaccinations, but everything else his body just doesn't fight.

Thanks for the lead on primary ciliary dyskinesia, I'm off to google it now!

Oh, the doc JUST called and said he's having a vest sent over-- I thought they ONLY did that for CF?????