I've posted here a few times and am in the process of appealing to insurance to have them cover the full genetic Ambry test for my 1 year old daughter. When my DD pediatrician ordered the first sweat test 8 months ago and it came back at 34, I told my family (parents) and they said "great, she doesn't have CF". I told them I wasn't convinced and they went on to say I was being ridiculous and that if the test is negative I need to stop worrying about it blah blah blah. Fast forward a few weeks and her GI doctor orders another sweat test and a genetic screen. Sweat test is 30 and genetic screen is negative. I tell my parents again and they pretty much tell me I was nuts to request a second sweat test and genetic screen anyway because she doesn't have CF. Anyway, I take my DD to a pulmonolgist that works in the local CF clinic to get a real opinion of her sweat tests and symptoms and he orders the full Ambry genetic test. I haven't told my parents or anyone else (except my husband of course) about the pulmonologist and the full test because they think she doesn't have it and that I'm being paranoid. I hate feeling like it's just me and my husband in this alone. Has anyone dealt with this with their families and how do you cope? And when you found out that your child did have CF, did you extended family even believe it (which is my fear if we do find out she has CF)? Thanks for reading through my long post <img src="i/expressions/face-icon-small-smile.gif" border="0">
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Dealing with Extended Family
- Thread starter daisymae
- Start date
I've posted here a few times and am in the process of appealing to insurance to have them cover the full genetic Ambry test for my 1 year old daughter. When my DD pediatrician ordered the first sweat test 8 months ago and it came back at 34, I told my family (parents) and they said "great, she doesn't have CF". I told them I wasn't convinced and they went on to say I was being ridiculous and that if the test is negative I need to stop worrying about it blah blah blah. Fast forward a few weeks and her GI doctor orders another sweat test and a genetic screen. Sweat test is 30 and genetic screen is negative. I tell my parents again and they pretty much tell me I was nuts to request a second sweat test and genetic screen anyway because she doesn't have CF. Anyway, I take my DD to a pulmonolgist that works in the local CF clinic to get a real opinion of her sweat tests and symptoms and he orders the full Ambry genetic test. I haven't told my parents or anyone else (except my husband of course) about the pulmonologist and the full test because they think she doesn't have it and that I'm being paranoid. I hate feeling like it's just me and my husband in this alone. Has anyone dealt with this with their families and how do you cope? And when you found out that your child did have CF, did you extended family even believe it (which is my fear if we do find out she has CF)? Thanks for reading through my long post <img src="i/expressions/face-icon-small-smile.gif" border="0">
I've posted here a few times and am in the process of appealing to insurance to have them cover the full genetic Ambry test for my 1 year old daughter. When my DD pediatrician ordered the first sweat test 8 months ago and it came back at 34, I told my family (parents) and they said "great, she doesn't have CF". I told them I wasn't convinced and they went on to say I was being ridiculous and that if the test is negative I need to stop worrying about it blah blah blah. Fast forward a few weeks and her GI doctor orders another sweat test and a genetic screen. Sweat test is 30 and genetic screen is negative. I tell my parents again and they pretty much tell me I was nuts to request a second sweat test and genetic screen anyway because she doesn't have CF. Anyway, I take my DD to a pulmonolgist that works in the local CF clinic to get a real opinion of her sweat tests and symptoms and he orders the full Ambry genetic test. I haven't told my parents or anyone else (except my husband of course) about the pulmonologist and the full test because they think she doesn't have it and that I'm being paranoid. I hate feeling like it's just me and my husband in this alone. Has anyone dealt with this with their families and how do you cope? And when you found out that your child did have CF, did you extended family even believe it (which is my fear if we do find out she has CF)? Thanks for reading through my long post <img src="i/expressions/face-icon-small-smile.gif" border="0">
I've posted here a few times and am in the process of appealing to insurance to have them cover the full genetic Ambry test for my 1 year old daughter. When my DD pediatrician ordered the first sweat test 8 months ago and it came back at 34, I told my family (parents) and they said "great, she doesn't have CF". I told them I wasn't convinced and they went on to say I was being ridiculous and that if the test is negative I need to stop worrying about it blah blah blah. Fast forward a few weeks and her GI doctor orders another sweat test and a genetic screen. Sweat test is 30 and genetic screen is negative. I tell my parents again and they pretty much tell me I was nuts to request a second sweat test and genetic screen anyway because she doesn't have CF. Anyway, I take my DD to a pulmonolgist that works in the local CF clinic to get a real opinion of her sweat tests and symptoms and he orders the full Ambry genetic test. I haven't told my parents or anyone else (except my husband of course) about the pulmonologist and the full test because they think she doesn't have it and that I'm being paranoid. I hate feeling like it's just me and my husband in this alone. Has anyone dealt with this with their families and how do you cope? And when you found out that your child did have CF, did you extended family even believe it (which is my fear if we do find out she has CF)? Thanks for reading through my long post <img src="i/expressions/face-icon-small-smile.gif" border="0">
I've posted here a few times and am in the process of appealing to insurance to have them cover the full genetic Ambry test for my 1 year old daughter. When my DD pediatrician ordered the first sweat test 8 months ago and it came back at 34, I told my family (parents) and they said "great, she doesn't have CF". I told them I wasn't convinced and they went on to say I was being ridiculous and that if the test is negative I need to stop worrying about it blah blah blah. Fast forward a few weeks and her GI doctor orders another sweat test and a genetic screen. Sweat test is 30 and genetic screen is negative. I tell my parents again and they pretty much tell me I was nuts to request a second sweat test and genetic screen anyway because she doesn't have CF. Anyway, I take my DD to a pulmonolgist that works in the local CF clinic to get a real opinion of her sweat tests and symptoms and he orders the full Ambry genetic test. I haven't told my parents or anyone else (except my husband of course) about the pulmonologist and the full test because they think she doesn't have it and that I'm being paranoid. I hate feeling like it's just me and my husband in this alone. Has anyone dealt with this with their families and how do you cope? And when you found out that your child did have CF, did you extended family even believe it (which is my fear if we do find out she has CF)? Thanks for reading through my long post <img src="i/expressions/face-icon-small-smile.gif" border="0">
M
Mommafirst
Guest
The larger family and even friend networks don't really get it. They haven't read what you have read, they don't really understand. And they think that by telling you "she doesn't have it, you are nuts" that its what you want to hear, you'll breathe a sigh of relief and it'll all go away. When we were going through this, even my husband did that. Every time I expressed my concern, I'd get "She's fine!" as if saying it really made it true.
When we did get diagnosed, I think a lot of people including my mom, thought "no way, she can't have CF" and many really thought we were wrong. Over time people have come around. I still don't think the vast majority of folks in our life understand what its all about and what we deal with, but really from the outside looking in, who does understand. I doubt I understand what others in my life are going through.
Hang in there. And know that pushing for the Ambry makes you a smart and caring mom. Obviously the pulm thinks there is reason to do the testing, otherwise they wouldn't have sweated her in the first place. And a good pulm would find a sweat number in the 30's suspicious. Hopefully its NOT CF, but I'd think they'd want to know why the sweat was elevated at all.
When we did get diagnosed, I think a lot of people including my mom, thought "no way, she can't have CF" and many really thought we were wrong. Over time people have come around. I still don't think the vast majority of folks in our life understand what its all about and what we deal with, but really from the outside looking in, who does understand. I doubt I understand what others in my life are going through.
Hang in there. And know that pushing for the Ambry makes you a smart and caring mom. Obviously the pulm thinks there is reason to do the testing, otherwise they wouldn't have sweated her in the first place. And a good pulm would find a sweat number in the 30's suspicious. Hopefully its NOT CF, but I'd think they'd want to know why the sweat was elevated at all.
M
Mommafirst
Guest
The larger family and even friend networks don't really get it. They haven't read what you have read, they don't really understand. And they think that by telling you "she doesn't have it, you are nuts" that its what you want to hear, you'll breathe a sigh of relief and it'll all go away. When we were going through this, even my husband did that. Every time I expressed my concern, I'd get "She's fine!" as if saying it really made it true.
When we did get diagnosed, I think a lot of people including my mom, thought "no way, she can't have CF" and many really thought we were wrong. Over time people have come around. I still don't think the vast majority of folks in our life understand what its all about and what we deal with, but really from the outside looking in, who does understand. I doubt I understand what others in my life are going through.
Hang in there. And know that pushing for the Ambry makes you a smart and caring mom. Obviously the pulm thinks there is reason to do the testing, otherwise they wouldn't have sweated her in the first place. And a good pulm would find a sweat number in the 30's suspicious. Hopefully its NOT CF, but I'd think they'd want to know why the sweat was elevated at all.
When we did get diagnosed, I think a lot of people including my mom, thought "no way, she can't have CF" and many really thought we were wrong. Over time people have come around. I still don't think the vast majority of folks in our life understand what its all about and what we deal with, but really from the outside looking in, who does understand. I doubt I understand what others in my life are going through.
Hang in there. And know that pushing for the Ambry makes you a smart and caring mom. Obviously the pulm thinks there is reason to do the testing, otherwise they wouldn't have sweated her in the first place. And a good pulm would find a sweat number in the 30's suspicious. Hopefully its NOT CF, but I'd think they'd want to know why the sweat was elevated at all.
M
Mommafirst
Guest
The larger family and even friend networks don't really get it. They haven't read what you have read, they don't really understand. And they think that by telling you "she doesn't have it, you are nuts" that its what you want to hear, you'll breathe a sigh of relief and it'll all go away. When we were going through this, even my husband did that. Every time I expressed my concern, I'd get "She's fine!" as if saying it really made it true.
When we did get diagnosed, I think a lot of people including my mom, thought "no way, she can't have CF" and many really thought we were wrong. Over time people have come around. I still don't think the vast majority of folks in our life understand what its all about and what we deal with, but really from the outside looking in, who does understand. I doubt I understand what others in my life are going through.
Hang in there. And know that pushing for the Ambry makes you a smart and caring mom. Obviously the pulm thinks there is reason to do the testing, otherwise they wouldn't have sweated her in the first place. And a good pulm would find a sweat number in the 30's suspicious. Hopefully its NOT CF, but I'd think they'd want to know why the sweat was elevated at all.
When we did get diagnosed, I think a lot of people including my mom, thought "no way, she can't have CF" and many really thought we were wrong. Over time people have come around. I still don't think the vast majority of folks in our life understand what its all about and what we deal with, but really from the outside looking in, who does understand. I doubt I understand what others in my life are going through.
Hang in there. And know that pushing for the Ambry makes you a smart and caring mom. Obviously the pulm thinks there is reason to do the testing, otherwise they wouldn't have sweated her in the first place. And a good pulm would find a sweat number in the 30's suspicious. Hopefully its NOT CF, but I'd think they'd want to know why the sweat was elevated at all.
M
Mommafirst
Guest
The larger family and even friend networks don't really get it. They haven't read what you have read, they don't really understand. And they think that by telling you "she doesn't have it, you are nuts" that its what you want to hear, you'll breathe a sigh of relief and it'll all go away. When we were going through this, even my husband did that. Every time I expressed my concern, I'd get "She's fine!" as if saying it really made it true.
When we did get diagnosed, I think a lot of people including my mom, thought "no way, she can't have CF" and many really thought we were wrong. Over time people have come around. I still don't think the vast majority of folks in our life understand what its all about and what we deal with, but really from the outside looking in, who does understand. I doubt I understand what others in my life are going through.
Hang in there. And know that pushing for the Ambry makes you a smart and caring mom. Obviously the pulm thinks there is reason to do the testing, otherwise they wouldn't have sweated her in the first place. And a good pulm would find a sweat number in the 30's suspicious. Hopefully its NOT CF, but I'd think they'd want to know why the sweat was elevated at all.
When we did get diagnosed, I think a lot of people including my mom, thought "no way, she can't have CF" and many really thought we were wrong. Over time people have come around. I still don't think the vast majority of folks in our life understand what its all about and what we deal with, but really from the outside looking in, who does understand. I doubt I understand what others in my life are going through.
Hang in there. And know that pushing for the Ambry makes you a smart and caring mom. Obviously the pulm thinks there is reason to do the testing, otherwise they wouldn't have sweated her in the first place. And a good pulm would find a sweat number in the 30's suspicious. Hopefully its NOT CF, but I'd think they'd want to know why the sweat was elevated at all.
M
Mommafirst
Guest
The larger family and even friend networks don't really get it. They haven't read what you have read, they don't really understand. And they think that by telling you "she doesn't have it, you are nuts" that its what you want to hear, you'll breathe a sigh of relief and it'll all go away. When we were going through this, even my husband did that. Every time I expressed my concern, I'd get "She's fine!" as if saying it really made it true.
<br />
<br />When we did get diagnosed, I think a lot of people including my mom, thought "no way, she can't have CF" and many really thought we were wrong. Over time people have come around. I still don't think the vast majority of folks in our life understand what its all about and what we deal with, but really from the outside looking in, who does understand. I doubt I understand what others in my life are going through.
<br />
<br />Hang in there. And know that pushing for the Ambry makes you a smart and caring mom. Obviously the pulm thinks there is reason to do the testing, otherwise they wouldn't have sweated her in the first place. And a good pulm would find a sweat number in the 30's suspicious. Hopefully its NOT CF, but I'd think they'd want to know why the sweat was elevated at all.
<br />
<br />When we did get diagnosed, I think a lot of people including my mom, thought "no way, she can't have CF" and many really thought we were wrong. Over time people have come around. I still don't think the vast majority of folks in our life understand what its all about and what we deal with, but really from the outside looking in, who does understand. I doubt I understand what others in my life are going through.
<br />
<br />Hang in there. And know that pushing for the Ambry makes you a smart and caring mom. Obviously the pulm thinks there is reason to do the testing, otherwise they wouldn't have sweated her in the first place. And a good pulm would find a sweat number in the 30's suspicious. Hopefully its NOT CF, but I'd think they'd want to know why the sweat was elevated at all.
DS' surgeon told us that based on his symptoms -- meconium illeus, volvus, obstruction... that he was 99% sure DS had CF. We were in shock and shared the info with our parents and a couple friends, who assured us that it couldn't be CF because of no family history, prayer... Basically they didn't want it to be true either. A week later the test results came back as CF and I can remember my telling my dad and who flew in to support us at the NICU and he kept saying, they had to be wrong.
Some people will think you're overreacting, despite the test results, some will be in denial. Basic fact of the matter is there's something wrong with your child and you're trying to find answers.
Some people will think you're overreacting, despite the test results, some will be in denial. Basic fact of the matter is there's something wrong with your child and you're trying to find answers.
DS' surgeon told us that based on his symptoms -- meconium illeus, volvus, obstruction... that he was 99% sure DS had CF. We were in shock and shared the info with our parents and a couple friends, who assured us that it couldn't be CF because of no family history, prayer... Basically they didn't want it to be true either. A week later the test results came back as CF and I can remember my telling my dad and who flew in to support us at the NICU and he kept saying, they had to be wrong.
Some people will think you're overreacting, despite the test results, some will be in denial. Basic fact of the matter is there's something wrong with your child and you're trying to find answers.
Some people will think you're overreacting, despite the test results, some will be in denial. Basic fact of the matter is there's something wrong with your child and you're trying to find answers.
DS' surgeon told us that based on his symptoms -- meconium illeus, volvus, obstruction... that he was 99% sure DS had CF. We were in shock and shared the info with our parents and a couple friends, who assured us that it couldn't be CF because of no family history, prayer... Basically they didn't want it to be true either. A week later the test results came back as CF and I can remember my telling my dad and who flew in to support us at the NICU and he kept saying, they had to be wrong.
Some people will think you're overreacting, despite the test results, some will be in denial. Basic fact of the matter is there's something wrong with your child and you're trying to find answers.
Some people will think you're overreacting, despite the test results, some will be in denial. Basic fact of the matter is there's something wrong with your child and you're trying to find answers.
DS' surgeon told us that based on his symptoms -- meconium illeus, volvus, obstruction... that he was 99% sure DS had CF. We were in shock and shared the info with our parents and a couple friends, who assured us that it couldn't be CF because of no family history, prayer... Basically they didn't want it to be true either. A week later the test results came back as CF and I can remember my telling my dad and who flew in to support us at the NICU and he kept saying, they had to be wrong.
Some people will think you're overreacting, despite the test results, some will be in denial. Basic fact of the matter is there's something wrong with your child and you're trying to find answers.
Some people will think you're overreacting, despite the test results, some will be in denial. Basic fact of the matter is there's something wrong with your child and you're trying to find answers.
DS' surgeon told us that based on his symptoms -- meconium illeus, volvus, obstruction... that he was 99% sure DS had CF. We were in shock and shared the info with our parents and a couple friends, who assured us that it couldn't be CF because of no family history, prayer... Basically they didn't want it to be true either. A week later the test results came back as CF and I can remember my telling my dad and who flew in to support us at the NICU and he kept saying, they had to be wrong.
<br />
<br />Some people will think you're overreacting, despite the test results, some will be in denial. Basic fact of the matter is there's something wrong with your child and you're trying to find answers.
<br />
<br />Some people will think you're overreacting, despite the test results, some will be in denial. Basic fact of the matter is there's something wrong with your child and you're trying to find answers.
Trust me, I heard it all. "You are just looking for trouble." "Why do you need for something to be wrong with your child?" "You just want people to feel sorry for you." I stopped arguing, and searching for answers, and accepted that my child just had "severe allergies and asthma". He was diagnosed at 15 years old with CF.
I know it would be nice to have family support. I hear there are families who actually do that for one another. I just don't have one of those. There are a lot of other members here who don't have it either. We've talked about it many times. I suppose it's easier to ignore CF and hope it goes away. I suppose when it's not your baby, it's easier to pretend it doesn't exist. We parents just don't have that luxury.
Listen to your mommy voice. If it turns out your child doesn't have CF, awesome! At least you followed through to rule it out. Please keep us posted.
Stacey
PS I had to fight my insurance too. In the end, I had to pay for the test, and Ambry was amazing at working with me to pay for it.
I know it would be nice to have family support. I hear there are families who actually do that for one another. I just don't have one of those. There are a lot of other members here who don't have it either. We've talked about it many times. I suppose it's easier to ignore CF and hope it goes away. I suppose when it's not your baby, it's easier to pretend it doesn't exist. We parents just don't have that luxury.
Listen to your mommy voice. If it turns out your child doesn't have CF, awesome! At least you followed through to rule it out. Please keep us posted.
Stacey
PS I had to fight my insurance too. In the end, I had to pay for the test, and Ambry was amazing at working with me to pay for it.
Trust me, I heard it all. "You are just looking for trouble." "Why do you need for something to be wrong with your child?" "You just want people to feel sorry for you." I stopped arguing, and searching for answers, and accepted that my child just had "severe allergies and asthma". He was diagnosed at 15 years old with CF.
I know it would be nice to have family support. I hear there are families who actually do that for one another. I just don't have one of those. There are a lot of other members here who don't have it either. We've talked about it many times. I suppose it's easier to ignore CF and hope it goes away. I suppose when it's not your baby, it's easier to pretend it doesn't exist. We parents just don't have that luxury.
Listen to your mommy voice. If it turns out your child doesn't have CF, awesome! At least you followed through to rule it out. Please keep us posted.
Stacey
PS I had to fight my insurance too. In the end, I had to pay for the test, and Ambry was amazing at working with me to pay for it.
I know it would be nice to have family support. I hear there are families who actually do that for one another. I just don't have one of those. There are a lot of other members here who don't have it either. We've talked about it many times. I suppose it's easier to ignore CF and hope it goes away. I suppose when it's not your baby, it's easier to pretend it doesn't exist. We parents just don't have that luxury.
Listen to your mommy voice. If it turns out your child doesn't have CF, awesome! At least you followed through to rule it out. Please keep us posted.
Stacey
PS I had to fight my insurance too. In the end, I had to pay for the test, and Ambry was amazing at working with me to pay for it.
Trust me, I heard it all. "You are just looking for trouble." "Why do you need for something to be wrong with your child?" "You just want people to feel sorry for you." I stopped arguing, and searching for answers, and accepted that my child just had "severe allergies and asthma". He was diagnosed at 15 years old with CF.
I know it would be nice to have family support. I hear there are families who actually do that for one another. I just don't have one of those. There are a lot of other members here who don't have it either. We've talked about it many times. I suppose it's easier to ignore CF and hope it goes away. I suppose when it's not your baby, it's easier to pretend it doesn't exist. We parents just don't have that luxury.
Listen to your mommy voice. If it turns out your child doesn't have CF, awesome! At least you followed through to rule it out. Please keep us posted.
Stacey
PS I had to fight my insurance too. In the end, I had to pay for the test, and Ambry was amazing at working with me to pay for it.
I know it would be nice to have family support. I hear there are families who actually do that for one another. I just don't have one of those. There are a lot of other members here who don't have it either. We've talked about it many times. I suppose it's easier to ignore CF and hope it goes away. I suppose when it's not your baby, it's easier to pretend it doesn't exist. We parents just don't have that luxury.
Listen to your mommy voice. If it turns out your child doesn't have CF, awesome! At least you followed through to rule it out. Please keep us posted.
Stacey
PS I had to fight my insurance too. In the end, I had to pay for the test, and Ambry was amazing at working with me to pay for it.
Trust me, I heard it all. "You are just looking for trouble." "Why do you need for something to be wrong with your child?" "You just want people to feel sorry for you." I stopped arguing, and searching for answers, and accepted that my child just had "severe allergies and asthma". He was diagnosed at 15 years old with CF.
I know it would be nice to have family support. I hear there are families who actually do that for one another. I just don't have one of those. There are a lot of other members here who don't have it either. We've talked about it many times. I suppose it's easier to ignore CF and hope it goes away. I suppose when it's not your baby, it's easier to pretend it doesn't exist. We parents just don't have that luxury.
Listen to your mommy voice. If it turns out your child doesn't have CF, awesome! At least you followed through to rule it out. Please keep us posted.
Stacey
PS I had to fight my insurance too. In the end, I had to pay for the test, and Ambry was amazing at working with me to pay for it.
I know it would be nice to have family support. I hear there are families who actually do that for one another. I just don't have one of those. There are a lot of other members here who don't have it either. We've talked about it many times. I suppose it's easier to ignore CF and hope it goes away. I suppose when it's not your baby, it's easier to pretend it doesn't exist. We parents just don't have that luxury.
Listen to your mommy voice. If it turns out your child doesn't have CF, awesome! At least you followed through to rule it out. Please keep us posted.
Stacey
PS I had to fight my insurance too. In the end, I had to pay for the test, and Ambry was amazing at working with me to pay for it.
Trust me, I heard it all. "You are just looking for trouble." "Why do you need for something to be wrong with your child?" "You just want people to feel sorry for you." I stopped arguing, and searching for answers, and accepted that my child just had "severe allergies and asthma". He was diagnosed at 15 years old with CF.
<br />
<br />I know it would be nice to have family support. I hear there are families who actually do that for one another. I just don't have one of those. There are a lot of other members here who don't have it either. We've talked about it many times. I suppose it's easier to ignore CF and hope it goes away. I suppose when it's not your baby, it's easier to pretend it doesn't exist. We parents just don't have that luxury.
<br />
<br />Listen to your mommy voice. If it turns out your child doesn't have CF, awesome! At least you followed through to rule it out. Please keep us posted.
<br />
<br />Stacey
<br />
<br />PS I had to fight my insurance too. In the end, I had to pay for the test, and Ambry was amazing at working with me to pay for it.
<br />
<br />I know it would be nice to have family support. I hear there are families who actually do that for one another. I just don't have one of those. There are a lot of other members here who don't have it either. We've talked about it many times. I suppose it's easier to ignore CF and hope it goes away. I suppose when it's not your baby, it's easier to pretend it doesn't exist. We parents just don't have that luxury.
<br />
<br />Listen to your mommy voice. If it turns out your child doesn't have CF, awesome! At least you followed through to rule it out. Please keep us posted.
<br />
<br />Stacey
<br />
<br />PS I had to fight my insurance too. In the end, I had to pay for the test, and Ambry was amazing at working with me to pay for it.