Is it possible to have a negative IRT, negative Sweat Test and still have CF?

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MommaKas

Guest
Yes her Pulmonologist runs an accredited CF center. He is an EXCELLENT doctor, my daughter loves him... but because of the two negative tests he doesn't see my youngest as a patient. Most of her symptoms are GI related. Their GI doctor was wonderful too... we we're very upset about his passing away. We've heard great things about their new doctor, but my older daughter had seen their original GI doctor since she was 4... I am waiting on a call back from the girls' Pediatrician to see if she will order the blood test and if it will be covered.
 
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LouLou

New member
My son has two mutations of cf but a negative IRT and negative sweat (scored an 11). He is 3.5 and followed as a cf patient.
 
L

LouLou

New member
My son has two mutations of cf but a negative IRT and negative sweat (scored an 11). He is 3.5 and followed as a cf patient.
 
L

LouLou

New member
My son has two mutations of cf but a negative IRT and negative sweat (scored an 11). He is 3.5 and followed as a cf patient.
 
M

MommaKas

Guest
Well I finally got a call back from the pediatrician.... she wants me to wait until we see the new GI doctor on the 17th. She said he will probably want more tests and she doesn't want my daughter to be stuck more than once being she is so small... it makes sense, but the worry and wait game is killing me....
 
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MommaKas

Guest
Well I finally got a call back from the pediatrician.... she wants me to wait until we see the new GI doctor on the 17th. She said he will probably want more tests and she doesn't want my daughter to be stuck more than once being she is so small... it makes sense, but the worry and wait game is killing me....
 
M

MommaKas

Guest
Well I finally got a call back from the pediatrician.... she wants me to wait until we see the new GI doctor on the 17th. She said he will probably want more tests and she doesn't want my daughter to be stuck more than once being she is so small... it makes sense, but the worry and wait game is killing me....
 
H

hmw

New member
'Hurry Up and Wait' is the hardest game to play as a parent!! Just because something 'makes sense' it doesn't necessarily make it any easier. I'm glad you are down to the last week of waiting as opposed to months... we will be here to help answer any more questions you have before or after the appt!
 
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hmw

New member
'Hurry Up and Wait' is the hardest game to play as a parent!! Just because something 'makes sense' it doesn't necessarily make it any easier. I'm glad you are down to the last week of waiting as opposed to months... we will be here to help answer any more questions you have before or after the appt!
 
H

hmw

New member
'Hurry Up and Wait' is the hardest game to play as a parent!! Just because something 'makes sense' it doesn't necessarily make it any easier. I'm glad you are down to the last week of waiting as opposed to months... we will be here to help answer any more questions you have before or after the appt!
 
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MeFamilyGal2

New member
Yes you can test negative and still be posative. My daughter 17 has been diagnosed with CF for 5 months and yet has tested negative on the sweat test and gene testing. The gene can hide among several genes that are unable to be test.
 
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MeFamilyGal2

New member
Yes you can test negative and still be posative. My daughter 17 has been diagnosed with CF for 5 months and yet has tested negative on the sweat test and gene testing. The gene can hide among several genes that are unable to be test.
 
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Printer

Active member
MommaKas OK. At minimum your younger daughter is a likely a CF Carrier (50% chance) with one Delta F 508 mutation. She is showing classic signs of CF. I want someone to explain to me ANY POSSIBLE reason that she should NOT BE TESTED. You and your husband are both AT LEAST Carriers of the Delta F508 mutation and it is possible that one or both of you could have CF. Have daughter screened for Delta F 508 and if that is negative have a FULL CF SEQUENCING done. You didn't say but your children need to be seen by a QUALIFIED CF SPECIALIST at an APPROVED CF CENTER. Good luck, Bill
 
P

Printer

Active member
MommaKas OK. At minimum your younger daughter is a likely a CF Carrier (50% chance) with one Delta F 508 mutation. She is showing classic signs of CF. I want someone to explain to me ANY POSSIBLE reason that she should NOT BE TESTED. You and your husband are both AT LEAST Carriers of the Delta F508 mutation and it is possible that one or both of you could have CF. Have daughter screened for Delta F 508 and if that is negative have a FULL CF SEQUENCING done. You didn't say but your children need to be seen by a QUALIFIED CF SPECIALIST at an APPROVED CF CENTER. Good luck, Bill
 
A

Anomie

New member
Talk to your older daughter's cf doctor about it at her next appointment. Contrary to what people may tell you, you can't just call an approved cf center and make an appointment for someone without a referral.
 
A

Anomie

New member
Talk to your older daughter's cf doctor about it at her next appointment. Contrary to what people may tell you, you can't just call an approved cf center and make an appointment for someone without a referral.
 
H

hmw

New member
I agree with talking to your cf team at your child's next clinic as getting an appt is not, in the vast majority of cases, as simple as calling them up and asking for one.

We needed to get a referral for my son (now dx'ed with CRMS) to even be seen there for an asthma consultation- reputable Children's hospitals and in addition, in this case, accredited ones- serve children from a wide area, are specialized and have large patient caseloads. BTW this referral was NOT for insurance purposes- we could have taken him there and gotten coverage without his pediatrician's approval. This referral was to determine why he was coming. They faxed paperwork to the ped, who filled it out and returned it to them, at which point he was given an appt.

So if you are running into real lack of cooperation on the part of the ped when it comes to sending you there, talking to the team in person may help in being able to get around the typical referral process.
 
H

hmw

New member
I agree with talking to your cf team at your child's next clinic as getting an appt is not, in the vast majority of cases, as simple as calling them up and asking for one.

We needed to get a referral for my son (now dx'ed with CRMS) to even be seen there for an asthma consultation- reputable Children's hospitals and in addition, in this case, accredited ones- serve children from a wide area, are specialized and have large patient caseloads. BTW this referral was NOT for insurance purposes- we could have taken him there and gotten coverage without his pediatrician's approval. This referral was to determine why he was coming. They faxed paperwork to the ped, who filled it out and returned it to them, at which point he was given an appt.

So if you are running into real lack of cooperation on the part of the ped when it comes to sending you there, talking to the team in person may help in being able to get around the typical referral process.
 
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