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What's lowest sweat test result,but was still DX w/CF thru genetic testing
- Thread starter AlexsMom
- Start date
thefrogprincess
New member
I just wanted to say wat to go! I almost fell out of my chair when I read that you are at an accredited CF center and seeing the freakin director! You are absolutely 110% right to ride them and not give up until you get what you want! As someone else mentioned, at the very least they need to rule out CF for SURE before doing anything else. Best of luck to you!
thefrogprincess
New member
I just wanted to say wat to go! I almost fell out of my chair when I read that you are at an accredited CF center and seeing the freakin director! You are absolutely 110% right to ride them and not give up until you get what you want! As someone else mentioned, at the very least they need to rule out CF for SURE before doing anything else. Best of luck to you!
thefrogprincess
New member
I just wanted to say wat to go! I almost fell out of my chair when I read that you are at an accredited CF center and seeing the freakin director! You are absolutely 110% right to ride them and not give up until you get what you want! As someone else mentioned, at the very least they need to rule out CF for SURE before doing anything else. Best of luck to you!
thefrogprincess
New member
I just wanted to say wat to go! I almost fell out of my chair when I read that you are at an accredited CF center and seeing the freakin director! You are absolutely 110% right to ride them and not give up until you get what you want! As someone else mentioned, at the very least they need to rule out CF for SURE before doing anything else. Best of luck to you!
thefrogprincess
New member
I just wanted to say wat to go! I almost fell out of my chair when I read that you are at an accredited CF center and seeing the freakin director! You are absolutely 110% right to ride them and not give up until you get what you want! As someone else mentioned, at the very least they need to rule out CF for SURE before doing anything else. Best of luck to you!
Hi
I just want to add that i am so sorry for your difficulties. Also as everyone has said, i think you should get the ambry test so you can feel confident it is NOT CF if that is in fact the case. I am sort of thinking that if your pulmo doesn't suspect CF it could be something else and i think it is GREAT that your doctors are willing to investigate other causes of your child's symptoms. However, while i believe there is no HARM in investigating other possible causes and while i think that this is the responsible thing for your docs to do in light of your child's low sweat chloride, i think that the ambry test is still necessary to rule out CF without any other lab tests that point definatively to something else as the cause of your child's symptoms.
Also i want to say if your son is not malnourished and is not malabsorbing and (specifically does not have edema (swelling) due to low protien levels) AND the sweat test was preformed correctly then i think it is unlikely your child has CF with such low results (you cited a 6 and 7 right?). Sweat tests are not always accurate but even ambry genetic testing is not always sufficient to rule out a diagnosis or confirm one. I think it is important to consider ALL the lab results and symptoms when making a diagnosis as hopefully your doctors will.
Good luck and please keep pushing your doctors for answers.... Also, again, i think it is WONDERFUL that your docs are searching for other causes of your child's symptoms. I have heard of a family who had a CF diagnosis for about a year before discovering their child actually had an immune defiency not CF.
I just want to add that i am so sorry for your difficulties. Also as everyone has said, i think you should get the ambry test so you can feel confident it is NOT CF if that is in fact the case. I am sort of thinking that if your pulmo doesn't suspect CF it could be something else and i think it is GREAT that your doctors are willing to investigate other causes of your child's symptoms. However, while i believe there is no HARM in investigating other possible causes and while i think that this is the responsible thing for your docs to do in light of your child's low sweat chloride, i think that the ambry test is still necessary to rule out CF without any other lab tests that point definatively to something else as the cause of your child's symptoms.
Also i want to say if your son is not malnourished and is not malabsorbing and (specifically does not have edema (swelling) due to low protien levels) AND the sweat test was preformed correctly then i think it is unlikely your child has CF with such low results (you cited a 6 and 7 right?). Sweat tests are not always accurate but even ambry genetic testing is not always sufficient to rule out a diagnosis or confirm one. I think it is important to consider ALL the lab results and symptoms when making a diagnosis as hopefully your doctors will.
Good luck and please keep pushing your doctors for answers.... Also, again, i think it is WONDERFUL that your docs are searching for other causes of your child's symptoms. I have heard of a family who had a CF diagnosis for about a year before discovering their child actually had an immune defiency not CF.
Hi
I just want to add that i am so sorry for your difficulties. Also as everyone has said, i think you should get the ambry test so you can feel confident it is NOT CF if that is in fact the case. I am sort of thinking that if your pulmo doesn't suspect CF it could be something else and i think it is GREAT that your doctors are willing to investigate other causes of your child's symptoms. However, while i believe there is no HARM in investigating other possible causes and while i think that this is the responsible thing for your docs to do in light of your child's low sweat chloride, i think that the ambry test is still necessary to rule out CF without any other lab tests that point definatively to something else as the cause of your child's symptoms.
Also i want to say if your son is not malnourished and is not malabsorbing and (specifically does not have edema (swelling) due to low protien levels) AND the sweat test was preformed correctly then i think it is unlikely your child has CF with such low results (you cited a 6 and 7 right?). Sweat tests are not always accurate but even ambry genetic testing is not always sufficient to rule out a diagnosis or confirm one. I think it is important to consider ALL the lab results and symptoms when making a diagnosis as hopefully your doctors will.
Good luck and please keep pushing your doctors for answers.... Also, again, i think it is WONDERFUL that your docs are searching for other causes of your child's symptoms. I have heard of a family who had a CF diagnosis for about a year before discovering their child actually had an immune defiency not CF.
I just want to add that i am so sorry for your difficulties. Also as everyone has said, i think you should get the ambry test so you can feel confident it is NOT CF if that is in fact the case. I am sort of thinking that if your pulmo doesn't suspect CF it could be something else and i think it is GREAT that your doctors are willing to investigate other causes of your child's symptoms. However, while i believe there is no HARM in investigating other possible causes and while i think that this is the responsible thing for your docs to do in light of your child's low sweat chloride, i think that the ambry test is still necessary to rule out CF without any other lab tests that point definatively to something else as the cause of your child's symptoms.
Also i want to say if your son is not malnourished and is not malabsorbing and (specifically does not have edema (swelling) due to low protien levels) AND the sweat test was preformed correctly then i think it is unlikely your child has CF with such low results (you cited a 6 and 7 right?). Sweat tests are not always accurate but even ambry genetic testing is not always sufficient to rule out a diagnosis or confirm one. I think it is important to consider ALL the lab results and symptoms when making a diagnosis as hopefully your doctors will.
Good luck and please keep pushing your doctors for answers.... Also, again, i think it is WONDERFUL that your docs are searching for other causes of your child's symptoms. I have heard of a family who had a CF diagnosis for about a year before discovering their child actually had an immune defiency not CF.
Hi
I just want to add that i am so sorry for your difficulties. Also as everyone has said, i think you should get the ambry test so you can feel confident it is NOT CF if that is in fact the case. I am sort of thinking that if your pulmo doesn't suspect CF it could be something else and i think it is GREAT that your doctors are willing to investigate other causes of your child's symptoms. However, while i believe there is no HARM in investigating other possible causes and while i think that this is the responsible thing for your docs to do in light of your child's low sweat chloride, i think that the ambry test is still necessary to rule out CF without any other lab tests that point definatively to something else as the cause of your child's symptoms.
Also i want to say if your son is not malnourished and is not malabsorbing and (specifically does not have edema (swelling) due to low protien levels) AND the sweat test was preformed correctly then i think it is unlikely your child has CF with such low results (you cited a 6 and 7 right?). Sweat tests are not always accurate but even ambry genetic testing is not always sufficient to rule out a diagnosis or confirm one. I think it is important to consider ALL the lab results and symptoms when making a diagnosis as hopefully your doctors will.
Good luck and please keep pushing your doctors for answers.... Also, again, i think it is WONDERFUL that your docs are searching for other causes of your child's symptoms. I have heard of a family who had a CF diagnosis for about a year before discovering their child actually had an immune defiency not CF.
I just want to add that i am so sorry for your difficulties. Also as everyone has said, i think you should get the ambry test so you can feel confident it is NOT CF if that is in fact the case. I am sort of thinking that if your pulmo doesn't suspect CF it could be something else and i think it is GREAT that your doctors are willing to investigate other causes of your child's symptoms. However, while i believe there is no HARM in investigating other possible causes and while i think that this is the responsible thing for your docs to do in light of your child's low sweat chloride, i think that the ambry test is still necessary to rule out CF without any other lab tests that point definatively to something else as the cause of your child's symptoms.
Also i want to say if your son is not malnourished and is not malabsorbing and (specifically does not have edema (swelling) due to low protien levels) AND the sweat test was preformed correctly then i think it is unlikely your child has CF with such low results (you cited a 6 and 7 right?). Sweat tests are not always accurate but even ambry genetic testing is not always sufficient to rule out a diagnosis or confirm one. I think it is important to consider ALL the lab results and symptoms when making a diagnosis as hopefully your doctors will.
Good luck and please keep pushing your doctors for answers.... Also, again, i think it is WONDERFUL that your docs are searching for other causes of your child's symptoms. I have heard of a family who had a CF diagnosis for about a year before discovering their child actually had an immune defiency not CF.
Hi
I just want to add that i am so sorry for your difficulties. Also as everyone has said, i think you should get the ambry test so you can feel confident it is NOT CF if that is in fact the case. I am sort of thinking that if your pulmo doesn't suspect CF it could be something else and i think it is GREAT that your doctors are willing to investigate other causes of your child's symptoms. However, while i believe there is no HARM in investigating other possible causes and while i think that this is the responsible thing for your docs to do in light of your child's low sweat chloride, i think that the ambry test is still necessary to rule out CF without any other lab tests that point definatively to something else as the cause of your child's symptoms.
Also i want to say if your son is not malnourished and is not malabsorbing and (specifically does not have edema (swelling) due to low protien levels) AND the sweat test was preformed correctly then i think it is unlikely your child has CF with such low results (you cited a 6 and 7 right?). Sweat tests are not always accurate but even ambry genetic testing is not always sufficient to rule out a diagnosis or confirm one. I think it is important to consider ALL the lab results and symptoms when making a diagnosis as hopefully your doctors will.
Good luck and please keep pushing your doctors for answers.... Also, again, i think it is WONDERFUL that your docs are searching for other causes of your child's symptoms. I have heard of a family who had a CF diagnosis for about a year before discovering their child actually had an immune defiency not CF.
I just want to add that i am so sorry for your difficulties. Also as everyone has said, i think you should get the ambry test so you can feel confident it is NOT CF if that is in fact the case. I am sort of thinking that if your pulmo doesn't suspect CF it could be something else and i think it is GREAT that your doctors are willing to investigate other causes of your child's symptoms. However, while i believe there is no HARM in investigating other possible causes and while i think that this is the responsible thing for your docs to do in light of your child's low sweat chloride, i think that the ambry test is still necessary to rule out CF without any other lab tests that point definatively to something else as the cause of your child's symptoms.
Also i want to say if your son is not malnourished and is not malabsorbing and (specifically does not have edema (swelling) due to low protien levels) AND the sweat test was preformed correctly then i think it is unlikely your child has CF with such low results (you cited a 6 and 7 right?). Sweat tests are not always accurate but even ambry genetic testing is not always sufficient to rule out a diagnosis or confirm one. I think it is important to consider ALL the lab results and symptoms when making a diagnosis as hopefully your doctors will.
Good luck and please keep pushing your doctors for answers.... Also, again, i think it is WONDERFUL that your docs are searching for other causes of your child's symptoms. I have heard of a family who had a CF diagnosis for about a year before discovering their child actually had an immune defiency not CF.
Hi
I just want to add that i am so sorry for your difficulties. Also as everyone has said, i think you should get the ambry test so you can feel confident it is NOT CF if that is in fact the case. I am sort of thinking that if your pulmo doesn't suspect CF it could be something else and i think it is GREAT that your doctors are willing to investigate other causes of your child's symptoms. However, while i believe there is no HARM in investigating other possible causes and while i think that this is the responsible thing for your docs to do in light of your child's low sweat chloride, i think that the ambry test is still necessary to rule out CF without any other lab tests that point definatively to something else as the cause of your child's symptoms.
Also i want to say if your son is not malnourished and is not malabsorbing and (specifically does not have edema (swelling) due to low protien levels) AND the sweat test was preformed correctly then i think it is unlikely your child has CF with such low results (you cited a 6 and 7 right?). Sweat tests are not always accurate but even ambry genetic testing is not always sufficient to rule out a diagnosis or confirm one. I think it is important to consider ALL the lab results and symptoms when making a diagnosis as hopefully your doctors will.
Good luck and please keep pushing your doctors for answers.... Also, again, i think it is WONDERFUL that your docs are searching for other causes of your child's symptoms. I have heard of a family who had a CF diagnosis for about a year before discovering their child actually had an immune defiency not CF.
I just want to add that i am so sorry for your difficulties. Also as everyone has said, i think you should get the ambry test so you can feel confident it is NOT CF if that is in fact the case. I am sort of thinking that if your pulmo doesn't suspect CF it could be something else and i think it is GREAT that your doctors are willing to investigate other causes of your child's symptoms. However, while i believe there is no HARM in investigating other possible causes and while i think that this is the responsible thing for your docs to do in light of your child's low sweat chloride, i think that the ambry test is still necessary to rule out CF without any other lab tests that point definatively to something else as the cause of your child's symptoms.
Also i want to say if your son is not malnourished and is not malabsorbing and (specifically does not have edema (swelling) due to low protien levels) AND the sweat test was preformed correctly then i think it is unlikely your child has CF with such low results (you cited a 6 and 7 right?). Sweat tests are not always accurate but even ambry genetic testing is not always sufficient to rule out a diagnosis or confirm one. I think it is important to consider ALL the lab results and symptoms when making a diagnosis as hopefully your doctors will.
Good luck and please keep pushing your doctors for answers.... Also, again, i think it is WONDERFUL that your docs are searching for other causes of your child's symptoms. I have heard of a family who had a CF diagnosis for about a year before discovering their child actually had an immune defiency not CF.
well, here's the scoop-first, thank-you for all your support and encouragement- I really was flipping out last nite- But I woke up this morn.w/new resolve and determination (even if my husb.has had it w/me and we're not speaking right now.......) Here's my progress....Called Pulmo's nurse,"We are an accedited Cf center and the lab is fine in doing sweat tests on only one arm, they are trained ......BLAAHHH-she also told me Pulmo.Doc. is on vacation to ask pediatrician to order Ambry. Saw pediatrician today-baby has gained weight-she was down to 21 lbs.when she came out of hosp., and is now up to 23lbs. in 3 weeks?-I didn't know what to do for her so I just started adding extra butter to everything-Pediatrician was thrilled at how well she looked,as in you can't see her ribs anymore-I thought she was getting chunkier,even though she's been a poop factory every time she eats...... but that's alot of weight....? Anyway, NO SURPRISE HERE-pediatrician sd.Ins.probably wouldn'y pay for Ambry if she ordered it, she wants me to ask Immunologist Doc. Thurs.if he will order it..............You get the idea here??? GI's office called- fecal fat not in yet- I'm to assume that weight gain is encouraging. That was my day.
well, here's the scoop-first, thank-you for all your support and encouragement- I really was flipping out last nite- But I woke up this morn.w/new resolve and determination (even if my husb.has had it w/me and we're not speaking right now.......) Here's my progress....Called Pulmo's nurse,"We are an accedited Cf center and the lab is fine in doing sweat tests on only one arm, they are trained ......BLAAHHH-she also told me Pulmo.Doc. is on vacation to ask pediatrician to order Ambry. Saw pediatrician today-baby has gained weight-she was down to 21 lbs.when she came out of hosp., and is now up to 23lbs. in 3 weeks?-I didn't know what to do for her so I just started adding extra butter to everything-Pediatrician was thrilled at how well she looked,as in you can't see her ribs anymore-I thought she was getting chunkier,even though she's been a poop factory every time she eats...... but that's alot of weight....? Anyway, NO SURPRISE HERE-pediatrician sd.Ins.probably wouldn'y pay for Ambry if she ordered it, she wants me to ask Immunologist Doc. Thurs.if he will order it..............You get the idea here??? GI's office called- fecal fat not in yet- I'm to assume that weight gain is encouraging. That was my day.
well, here's the scoop-first, thank-you for all your support and encouragement- I really was flipping out last nite- But I woke up this morn.w/new resolve and determination (even if my husb.has had it w/me and we're not speaking right now.......) Here's my progress....Called Pulmo's nurse,"We are an accedited Cf center and the lab is fine in doing sweat tests on only one arm, they are trained ......BLAAHHH-she also told me Pulmo.Doc. is on vacation to ask pediatrician to order Ambry. Saw pediatrician today-baby has gained weight-she was down to 21 lbs.when she came out of hosp., and is now up to 23lbs. in 3 weeks?-I didn't know what to do for her so I just started adding extra butter to everything-Pediatrician was thrilled at how well she looked,as in you can't see her ribs anymore-I thought she was getting chunkier,even though she's been a poop factory every time she eats...... but that's alot of weight....? Anyway, NO SURPRISE HERE-pediatrician sd.Ins.probably wouldn'y pay for Ambry if she ordered it, she wants me to ask Immunologist Doc. Thurs.if he will order it..............You get the idea here??? GI's office called- fecal fat not in yet- I'm to assume that weight gain is encouraging. That was my day.
well, here's the scoop-first, thank-you for all your support and encouragement- I really was flipping out last nite- But I woke up this morn.w/new resolve and determination (even if my husb.has had it w/me and we're not speaking right now.......) Here's my progress....Called Pulmo's nurse,"We are an accedited Cf center and the lab is fine in doing sweat tests on only one arm, they are trained ......BLAAHHH-she also told me Pulmo.Doc. is on vacation to ask pediatrician to order Ambry. Saw pediatrician today-baby has gained weight-she was down to 21 lbs.when she came out of hosp., and is now up to 23lbs. in 3 weeks?-I didn't know what to do for her so I just started adding extra butter to everything-Pediatrician was thrilled at how well she looked,as in you can't see her ribs anymore-I thought she was getting chunkier,even though she's been a poop factory every time she eats...... but that's alot of weight....? Anyway, NO SURPRISE HERE-pediatrician sd.Ins.probably wouldn'y pay for Ambry if she ordered it, she wants me to ask Immunologist Doc. Thurs.if he will order it..............You get the idea here??? GI's office called- fecal fat not in yet- I'm to assume that weight gain is encouraging. That was my day.
well, here's the scoop-first, thank-you for all your support and encouragement- I really was flipping out last nite- But I woke up this morn.w/new resolve and determination (even if my husb.has had it w/me and we're not speaking right now.......) Here's my progress....Called Pulmo's nurse,"We are an accedited Cf center and the lab is fine in doing sweat tests on only one arm, they are trained ......BLAAHHH-she also told me Pulmo.Doc. is on vacation to ask pediatrician to order Ambry. Saw pediatrician today-baby has gained weight-she was down to 21 lbs.when she came out of hosp., and is now up to 23lbs. in 3 weeks?-I didn't know what to do for her so I just started adding extra butter to everything-Pediatrician was thrilled at how well she looked,as in you can't see her ribs anymore-I thought she was getting chunkier,even though she's been a poop factory every time she eats...... but that's alot of weight....? Anyway, NO SURPRISE HERE-pediatrician sd.Ins.probably wouldn'y pay for Ambry if she ordered it, she wants me to ask Immunologist Doc. Thurs.if he will order it..............You get the idea here??? GI's office called- fecal fat not in yet- I'm to assume that weight gain is encouraging. That was my day.