Suspected CF-looking for information

F

fallenarches

New member
We are back. They don't THINK she has CF. The "rapid" sweat test patch thing was negative and they said they almost never see the "real" sweat test come back positive when that is negative. We will have the actual sweat numbers later today or early tomorrow. They did do the fecal test as DD does have loose, yucky stools. If both of these come back negative, they said they won't do the DNA testing. Her lung function tests were very good, 99-104, which I expected since she really doesn't have any breathing issues right now. So, this is good news, except where in the heck did the blocked sinuses and the polyps come from. She has her follow up with the Sinus specialist at the ENT clinic tomorrow so hopefully we will have more answers then. If the CF tests come back negative they do want her to see a GI dr though. She is sick of doctors <img src="i/expressions/face-icon-small-smile.gif" border="0">.
 
F

fallenarches

New member
We are back. They don't THINK she has CF. The "rapid" sweat test patch thing was negative and they said they almost never see the "real" sweat test come back positive when that is negative. We will have the actual sweat numbers later today or early tomorrow. They did do the fecal test as DD does have loose, yucky stools. If both of these come back negative, they said they won't do the DNA testing. Her lung function tests were very good, 99-104, which I expected since she really doesn't have any breathing issues right now. So, this is good news, except where in the heck did the blocked sinuses and the polyps come from. She has her follow up with the Sinus specialist at the ENT clinic tomorrow so hopefully we will have more answers then. If the CF tests come back negative they do want her to see a GI dr though. She is sick of doctors <img src="i/expressions/face-icon-small-smile.gif" border="0">.
 
F

fallenarches

New member
We are back. They don't THINK she has CF. The "rapid" sweat test patch thing was negative and they said they almost never see the "real" sweat test come back positive when that is negative. We will have the actual sweat numbers later today or early tomorrow. They did do the fecal test as DD does have loose, yucky stools. If both of these come back negative, they said they won't do the DNA testing. Her lung function tests were very good, 99-104, which I expected since she really doesn't have any breathing issues right now. So, this is good news, except where in the heck did the blocked sinuses and the polyps come from. She has her follow up with the Sinus specialist at the ENT clinic tomorrow so hopefully we will have more answers then. If the CF tests come back negative they do want her to see a GI dr though. She is sick of doctors <img src="i/expressions/face-icon-small-smile.gif" border="0">.
 
C

Caringmom

New member
I keep seeing in the index that more messages have been added to this thread, but they are not showing up! Anyone else having these problems?
 
C

Caringmom

New member
I keep seeing in the index that more messages have been added to this thread, but they are not showing up! Anyone else having these problems?
 
C

Caringmom

New member
I keep seeing in the index that more messages have been added to this thread, but they are not showing up! Anyone else having these problems?
 
F

fallenarches

New member
YES--I switched to the "threading" mode and I can see them. Not that this will help you because you can't see it <img src="i/expressions/face-icon-small-smile.gif" border="0">.
 
F

fallenarches

New member
YES--I switched to the "threading" mode and I can see them. Not that this will help you because you can't see it <img src="i/expressions/face-icon-small-smile.gif" border="0">.
 
F

fallenarches

New member
YES--I switched to the "threading" mode and I can see them. Not that this will help you because you can't see it <img src="i/expressions/face-icon-small-smile.gif" border="0">.
 
F

fallenarches

New member
Got sweat test numbers back, 19 and 22 so WAY below normal. She had a follow up with the sinus specialist at the ENT's office =HORRIBLE MAN. We are going to follow up with a different ENT. He started by saying everyone has polyps, most people just don't know it and we really just don't do anything about it--um, no, wrong answer. He never looked at her chart, never had her back history, didn't even ask if she was having issues, NOTHING. When he said he wasn't going to do anything DD started to cry. He just didn't get it. Fortunately he had a medical resident helping that day and when the DR left the room the resident asked what was wrong. We went through the whole history, etc. The dr came back in and the intern filled him in. He then changed his tune and gave her inhaled steroids, oral steroids, inhaled and oral antibiotics. We got the nasal nebulizer today--cool thing if you have to do sinus rinses too. We will see what happens. We are going to make an appointment with the ENT associated with the CF clinic.

They "officially" say she does NOT have CF--so that is good. Now we just need to figure out why her sinuses were 90% blocked, why she has nasal polyps and all this other crap. She has an appointment with the allergy dr next week for testing--she's been tested before and nothing so we will see if that has changed. Back to square one I guess.
 
F

fallenarches

New member
Got sweat test numbers back, 19 and 22 so WAY below normal. She had a follow up with the sinus specialist at the ENT's office =HORRIBLE MAN. We are going to follow up with a different ENT. He started by saying everyone has polyps, most people just don't know it and we really just don't do anything about it--um, no, wrong answer. He never looked at her chart, never had her back history, didn't even ask if she was having issues, NOTHING. When he said he wasn't going to do anything DD started to cry. He just didn't get it. Fortunately he had a medical resident helping that day and when the DR left the room the resident asked what was wrong. We went through the whole history, etc. The dr came back in and the intern filled him in. He then changed his tune and gave her inhaled steroids, oral steroids, inhaled and oral antibiotics. We got the nasal nebulizer today--cool thing if you have to do sinus rinses too. We will see what happens. We are going to make an appointment with the ENT associated with the CF clinic.

They "officially" say she does NOT have CF--so that is good. Now we just need to figure out why her sinuses were 90% blocked, why she has nasal polyps and all this other crap. She has an appointment with the allergy dr next week for testing--she's been tested before and nothing so we will see if that has changed. Back to square one I guess.
 
F

fallenarches

New member
Got sweat test numbers back, 19 and 22 so WAY below normal. She had a follow up with the sinus specialist at the ENT's office =HORRIBLE MAN. We are going to follow up with a different ENT. He started by saying everyone has polyps, most people just don't know it and we really just don't do anything about it--um, no, wrong answer. He never looked at her chart, never had her back history, didn't even ask if she was having issues, NOTHING. When he said he wasn't going to do anything DD started to cry. He just didn't get it. Fortunately he had a medical resident helping that day and when the DR left the room the resident asked what was wrong. We went through the whole history, etc. The dr came back in and the intern filled him in. He then changed his tune and gave her inhaled steroids, oral steroids, inhaled and oral antibiotics. We got the nasal nebulizer today--cool thing if you have to do sinus rinses too. We will see what happens. We are going to make an appointment with the ENT associated with the CF clinic.
<br />
<br />They "officially" say she does NOT have CF--so that is good. Now we just need to figure out why her sinuses were 90% blocked, why she has nasal polyps and all this other crap. She has an appointment with the allergy dr next week for testing--she's been tested before and nothing so we will see if that has changed. Back to square one I guess.
 
You must log in or register to reply here.
Top