Bill - you are not beating a dead horse. We have been to an approved cf clinic, the only one in our state, which is where we got the first sweat test done. We live in a teeny tiny state and in fact only 1 doctor here treats pediatric CF. It is the same office my son goes for his cardiologist and neurologist. In order to get a referral to go to this clinic, I need to get approval from the GP first, or her health insurance won't pay and they won't even schedule an apt. without a referral. It is a first step in the process of getting a sweat test for her and perhaps a repeat for my son.
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Sweat Test Required?
- Thread starter 3andahalf
- Start date
Bill - you are not beating a dead horse. We have been to an approved cf clinic, the only one in our state, which is where we got the first sweat test done. We live in a teeny tiny state and in fact only 1 doctor here treats pediatric CF. It is the same office my son goes for his cardiologist and neurologist. In order to get a referral to go to this clinic, I need to get approval from the GP first, or her health insurance won't pay and they won't even schedule an apt. without a referral. It is a first step in the process of getting a sweat test for her and perhaps a repeat for my son.
TestifyToLove
New member
I know of more than one parent who was themselves diagnosed with CF AFTER their child was diagnosed because they had a lesser mutation and were asymptomatic. I have no idea why you think it's impossible for your DH or you to have a different CF mutation beyond the DeltaF508 you *know* you have simply because you have no symptoms. Have either of you had a full genetic panel done? F508 is very common and found on very low level testing. There are 1500 mutations. It only takes one lesser mutation to result in CF, and you certainly aren't guaranteed that niether you nor your DH have CF simply because you don't present with symptoms yet. If anything, given the struggles of your children, it's more likely one of you DOES have CF.
Other posters have been really clear in what is the safest option for proceeding.
Other posters have been really clear in what is the safest option for proceeding.
TestifyToLove
New member
I know of more than one parent who was themselves diagnosed with CF AFTER their child was diagnosed because they had a lesser mutation and were asymptomatic. I have no idea why you think it's impossible for your DH or you to have a different CF mutation beyond the DeltaF508 you *know* you have simply because you have no symptoms. Have either of you had a full genetic panel done? F508 is very common and found on very low level testing. There are 1500 mutations. It only takes one lesser mutation to result in CF, and you certainly aren't guaranteed that niether you nor your DH have CF simply because you don't present with symptoms yet. If anything, given the struggles of your children, it's more likely one of you DOES have CF.
Other posters have been really clear in what is the safest option for proceeding.
Other posters have been really clear in what is the safest option for proceeding.
TestifyToLove
New member
I know of more than one parent who was themselves diagnosed with CF AFTER their child was diagnosed because they had a lesser mutation and were asymptomatic. I have no idea why you think it's impossible for your DH or you to have a different CF mutation beyond the DeltaF508 you *know* you have simply because you have no symptoms. Have either of you had a full genetic panel done? F508 is very common and found on very low level testing. There are 1500 mutations. It only takes one lesser mutation to result in CF, and you certainly aren't guaranteed that niether you nor your DH have CF simply because you don't present with symptoms yet. If anything, given the struggles of your children, it's more likely one of you DOES have CF.
Other posters have been really clear in what is the safest option for proceeding.
Other posters have been really clear in what is the safest option for proceeding.
TestifyToLove
New member
I know of more than one parent who was themselves diagnosed with CF AFTER their child was diagnosed because they had a lesser mutation and were asymptomatic. I have no idea why you think it's impossible for your DH or you to have a different CF mutation beyond the DeltaF508 you *know* you have simply because you have no symptoms. Have either of you had a full genetic panel done? F508 is very common and found on very low level testing. There are 1500 mutations. It only takes one lesser mutation to result in CF, and you certainly aren't guaranteed that niether you nor your DH have CF simply because you don't present with symptoms yet. If anything, given the struggles of your children, it's more likely one of you DOES have CF.
Other posters have been really clear in what is the safest option for proceeding.
Other posters have been really clear in what is the safest option for proceeding.
TestifyToLove
New member
I know of more than one parent who was themselves diagnosed with CF AFTER their child was diagnosed because they had a lesser mutation and were asymptomatic. I have no idea why you think it's impossible for your DH or you to have a different CF mutation beyond the DeltaF508 you *know* you have simply because you have no symptoms. Have either of you had a full genetic panel done? F508 is very common and found on very low level testing. There are 1500 mutations. It only takes one lesser mutation to result in CF, and you certainly aren't guaranteed that niether you nor your DH have CF simply because you don't present with symptoms yet. If anything, given the struggles of your children, it's more likely one of you DOES have CF.
Other posters have been really clear in what is the safest option for proceeding.
Other posters have been really clear in what is the safest option for proceeding.
TestifyToLove
New member
I know of more than one parent who was themselves diagnosed with CF AFTER their child was diagnosed because they had a lesser mutation and were asymptomatic. I have no idea why you think it's impossible for your DH or you to have a different CF mutation beyond the DeltaF508 you *know* you have simply because you have no symptoms. Have either of you had a full genetic panel done? F508 is very common and found on very low level testing. There are 1500 mutations. It only takes one lesser mutation to result in CF, and you certainly aren't guaranteed that niether you nor your DH have CF simply because you don't present with symptoms yet. If anything, given the struggles of your children, it's more likely one of you DOES have CF.
Other posters have been really clear in what is the safest option for proceeding.
Other posters have been really clear in what is the safest option for proceeding.
Testify- {"I have no idea why you think it's impossible for your DH or you to have a different CF mutation beyond the DeltaF508 you *know* you have simply because you have no symptoms. Have either of you had a full genetic panel done?"}
I got the above impression from the CF Foundation and from the genetics counseler I spoke with who said since we are in our 30's and asymptomatic we don't have CF. We did not have a full panel done, I believe they tested through the Mayo Clinic for 58 or so mutations and my son just had the newborn screening. I came here for some answers, support and other peoples opinions, which I have been thankful for and have listened too.
I got the above impression from the CF Foundation and from the genetics counseler I spoke with who said since we are in our 30's and asymptomatic we don't have CF. We did not have a full panel done, I believe they tested through the Mayo Clinic for 58 or so mutations and my son just had the newborn screening. I came here for some answers, support and other peoples opinions, which I have been thankful for and have listened too.
Testify- {"I have no idea why you think it's impossible for your DH or you to have a different CF mutation beyond the DeltaF508 you *know* you have simply because you have no symptoms. Have either of you had a full genetic panel done?"}
I got the above impression from the CF Foundation and from the genetics counseler I spoke with who said since we are in our 30's and asymptomatic we don't have CF. We did not have a full panel done, I believe they tested through the Mayo Clinic for 58 or so mutations and my son just had the newborn screening. I came here for some answers, support and other peoples opinions, which I have been thankful for and have listened too.
I got the above impression from the CF Foundation and from the genetics counseler I spoke with who said since we are in our 30's and asymptomatic we don't have CF. We did not have a full panel done, I believe they tested through the Mayo Clinic for 58 or so mutations and my son just had the newborn screening. I came here for some answers, support and other peoples opinions, which I have been thankful for and have listened too.
Testify- {"I have no idea why you think it's impossible for your DH or you to have a different CF mutation beyond the DeltaF508 you *know* you have simply because you have no symptoms. Have either of you had a full genetic panel done?"}
I got the above impression from the CF Foundation and from the genetics counseler I spoke with who said since we are in our 30's and asymptomatic we don't have CF. We did not have a full panel done, I believe they tested through the Mayo Clinic for 58 or so mutations and my son just had the newborn screening. I came here for some answers, support and other peoples opinions, which I have been thankful for and have listened too.
I got the above impression from the CF Foundation and from the genetics counseler I spoke with who said since we are in our 30's and asymptomatic we don't have CF. We did not have a full panel done, I believe they tested through the Mayo Clinic for 58 or so mutations and my son just had the newborn screening. I came here for some answers, support and other peoples opinions, which I have been thankful for and have listened too.
Tinymiracle1
New member
As a mom to a recently diagnosed daughter (coming up on her 1 year dx), I agree with the above statements of getting the kids retested via sweat tests and genetic tests. If the clinic only tested for 58 or so mutations, there is a great chance they are missing the mutations your children may have. My daughters mutation has not been discovered yet. It happens in 1% of the CF population. However, she had 3 positive sweat tests (140, 70, 146) and she has cultured many bugs including Pseudomonas. She has had many, many hospitalizations in her 19 months for CF exaserbations. The last one she was admitted for a month. They will retest her down the road to see if any new mutations have been discovered. I am telling you this because it is so important to know one way or the other. If we had not explored this avenue, her lungs might be barely functioning now with all they have been through and the recent pseudomonas growth on her culture. She is an extreme preemie so her lungs are already weaker than most. Without the treatments, I would hate to see what might have happened to her or even down the road what damage might have happened to her lungs since each bug and each CF exaserbation causes damage. It appears your son is symtomatic....most of the things you said he deals with sounds like my daughter. Your daughter might not be showing symtoms but the salt on her pillow which is very abnormal. My son sweats his butt off most nights and I don't find any crusty salt left behind. He was sweat tested and had a high normal. He will get an additional sweat test in the future and lab draw for genetics. He is always coughing and it worries me. He receives treatments for asthma but I want to make sure I know for a fact that he is not a CF child. I am praying that the kids are PERFECTLY fine and dont have CF but just are carriers. But, it would be peace of mind for you to find out for sure, go through Ambry Genetics, and get the large panel run instead of the 58+. Hugs sent to you and keep us posted. I will keep all of you in my thoughts and prayers. Early intervention is the key....starting now in their young years instead of in their teenage years with treatment would be most beneficial. Like my CF clinic said, "No two people with CF are the same. Everyone is so different. Some show signs, some don't until later in life." BTW: I have known of people who were dx in their 50's with CF. So, I would not take the "you are in your 30's so you don't have it" comment to heart. It sounds like some more education needs done at the clinic you go too. I don't want to be rude and say they are bad because I do not know them or had the pleasure of taking my child there but it is a little red flag to me that you might need to travel to a more known CF clinic to get to the bottom of things. Hang in there...CF is never easy.
Tinymiracle1
New member
As a mom to a recently diagnosed daughter (coming up on her 1 year dx), I agree with the above statements of getting the kids retested via sweat tests and genetic tests. If the clinic only tested for 58 or so mutations, there is a great chance they are missing the mutations your children may have. My daughters mutation has not been discovered yet. It happens in 1% of the CF population. However, she had 3 positive sweat tests (140, 70, 146) and she has cultured many bugs including Pseudomonas. She has had many, many hospitalizations in her 19 months for CF exaserbations. The last one she was admitted for a month. They will retest her down the road to see if any new mutations have been discovered. I am telling you this because it is so important to know one way or the other. If we had not explored this avenue, her lungs might be barely functioning now with all they have been through and the recent pseudomonas growth on her culture. She is an extreme preemie so her lungs are already weaker than most. Without the treatments, I would hate to see what might have happened to her or even down the road what damage might have happened to her lungs since each bug and each CF exaserbation causes damage. It appears your son is symtomatic....most of the things you said he deals with sounds like my daughter. Your daughter might not be showing symtoms but the salt on her pillow which is very abnormal. My son sweats his butt off most nights and I don't find any crusty salt left behind. He was sweat tested and had a high normal. He will get an additional sweat test in the future and lab draw for genetics. He is always coughing and it worries me. He receives treatments for asthma but I want to make sure I know for a fact that he is not a CF child. I am praying that the kids are PERFECTLY fine and dont have CF but just are carriers. But, it would be peace of mind for you to find out for sure, go through Ambry Genetics, and get the large panel run instead of the 58+. Hugs sent to you and keep us posted. I will keep all of you in my thoughts and prayers. Early intervention is the key....starting now in their young years instead of in their teenage years with treatment would be most beneficial. Like my CF clinic said, "No two people with CF are the same. Everyone is so different. Some show signs, some don't until later in life." BTW: I have known of people who were dx in their 50's with CF. So, I would not take the "you are in your 30's so you don't have it" comment to heart. It sounds like some more education needs done at the clinic you go too. I don't want to be rude and say they are bad because I do not know them or had the pleasure of taking my child there but it is a little red flag to me that you might need to travel to a more known CF clinic to get to the bottom of things. Hang in there...CF is never easy.
Tinymiracle1
New member
As a mom to a recently diagnosed daughter (coming up on her 1 year dx), I agree with the above statements of getting the kids retested via sweat tests and genetic tests. If the clinic only tested for 58 or so mutations, there is a great chance they are missing the mutations your children may have. My daughters mutation has not been discovered yet. It happens in 1% of the CF population. However, she had 3 positive sweat tests (140, 70, 146) and she has cultured many bugs including Pseudomonas. She has had many, many hospitalizations in her 19 months for CF exaserbations. The last one she was admitted for a month. They will retest her down the road to see if any new mutations have been discovered. I am telling you this because it is so important to know one way or the other. If we had not explored this avenue, her lungs might be barely functioning now with all they have been through and the recent pseudomonas growth on her culture. She is an extreme preemie so her lungs are already weaker than most. Without the treatments, I would hate to see what might have happened to her or even down the road what damage might have happened to her lungs since each bug and each CF exaserbation causes damage. It appears your son is symtomatic....most of the things you said he deals with sounds like my daughter. Your daughter might not be showing symtoms but the salt on her pillow which is very abnormal. My son sweats his butt off most nights and I don't find any crusty salt left behind. He was sweat tested and had a high normal. He will get an additional sweat test in the future and lab draw for genetics. He is always coughing and it worries me. He receives treatments for asthma but I want to make sure I know for a fact that he is not a CF child. I am praying that the kids are PERFECTLY fine and dont have CF but just are carriers. But, it would be peace of mind for you to find out for sure, go through Ambry Genetics, and get the large panel run instead of the 58+. Hugs sent to you and keep us posted. I will keep all of you in my thoughts and prayers. Early intervention is the key....starting now in their young years instead of in their teenage years with treatment would be most beneficial. Like my CF clinic said, "No two people with CF are the same. Everyone is so different. Some show signs, some don't until later in life." BTW: I have known of people who were dx in their 50's with CF. So, I would not take the "you are in your 30's so you don't have it" comment to heart. It sounds like some more education needs done at the clinic you go too. I don't want to be rude and say they are bad because I do not know them or had the pleasure of taking my child there but it is a little red flag to me that you might need to travel to a more known CF clinic to get to the bottom of things. Hang in there...CF is never easy.