I agree about the enzymes. If they are not necessary, why spend the time and money on them? Did they test whether he needed them or not, or did they just start them just because most CFers take them? I would ask. Sounds like if weight is good and stools are normal he wouldn't need them? Not sure though.
Newly diagnosed infant
- Thread starter petnurse
- Start date
I agree about the enzymes. If they are not necessary, why spend the time and money on them? Did they test whether he needed them or not, or did they just start them just because most CFers take them? I would ask. Sounds like if weight is good and stools are normal he wouldn't need them? Not sure though.
I agree about the enzymes. If they are not necessary, why spend the time and money on them? Did they test whether he needed them or not, or did they just start them just because most CFers take them? I would ask. Sounds like if weight is good and stools are normal he wouldn't need them? Not sure though.
I agree about the enzymes. If they are not necessary, why spend the time and money on them? Did they test whether he needed them or not, or did they just start them just because most CFers take them? I would ask. Sounds like if weight is good and stools are normal he wouldn't need them? Not sure though.
I agree about the enzymes. If they are not necessary, why spend the time and money on them? Did they test whether he needed them or not, or did they just start them just because most CFers take them? I would ask. Sounds like if weight is good and stools are normal he wouldn't need them? Not sure though.
Hello and congrats on your new baby! I can guarantee you that many have read your post and sigh because it's so hard to respond with a definitive answer and then they may decide not to post at all! There's just no easy way to provide an adequate response.
My daughter is just over a year old and was hospitalized at two weeks of age due to respiratory issues. To this day, I don't know if she was hospitalized because she has CF, because she aspirated during delivery, because she aspirated during delivery and CF caused further complications, because there were HORRIBLE fires during that time, etc...etc. What I can say is that she's been doing well since, but slow on weight gain. Her current treatments consist of CPT 3x daily, enzymes, albuterol with each CPT session, and AquADEKS vitamins. She's a happy and silly little girl!!
Both of my daughter's mutations are ddf508 but the progression of her condition won't necessarily parallel that of another individual with the same mutations. Essentially, mutations don't tell you anything about the "severity" of CF. What is known is that homozygous ddf508 individuals are likely to exhibit both respiratory and digestive issues, but there are always exceptions. There are modifier genes that also play a role, of which, we have no exact knowledge of what those genes may be. Even siblings with the same mutations follow a separate progression.
It's very frustrating not to have a "guarantee" regarding how your son's CF may progress. He may be symptomatic OR asymptomatic with diligent care and treatments. He may experience many respiratory issues as a child and then fewer as he gets older. It's almost mind boggling. What is known is that you must follow a strict treatment regimen and do your own research. Don't expect a CF doctor to know all there is to treating CF. Don't be afraid to ask questions and seek out the answers yourself. Be optimistic that CF treatments have come so far...be grateful you have an early diagnosis so that you can hopefully slow the progression of the disease...love that little boy and make certain he grows to be a child who happens to have CF but can do all of the "normal" kid things!
(from one pet nurse to another, I believe!)
My daughter is just over a year old and was hospitalized at two weeks of age due to respiratory issues. To this day, I don't know if she was hospitalized because she has CF, because she aspirated during delivery, because she aspirated during delivery and CF caused further complications, because there were HORRIBLE fires during that time, etc...etc. What I can say is that she's been doing well since, but slow on weight gain. Her current treatments consist of CPT 3x daily, enzymes, albuterol with each CPT session, and AquADEKS vitamins. She's a happy and silly little girl!!
Both of my daughter's mutations are ddf508 but the progression of her condition won't necessarily parallel that of another individual with the same mutations. Essentially, mutations don't tell you anything about the "severity" of CF. What is known is that homozygous ddf508 individuals are likely to exhibit both respiratory and digestive issues, but there are always exceptions. There are modifier genes that also play a role, of which, we have no exact knowledge of what those genes may be. Even siblings with the same mutations follow a separate progression.
It's very frustrating not to have a "guarantee" regarding how your son's CF may progress. He may be symptomatic OR asymptomatic with diligent care and treatments. He may experience many respiratory issues as a child and then fewer as he gets older. It's almost mind boggling. What is known is that you must follow a strict treatment regimen and do your own research. Don't expect a CF doctor to know all there is to treating CF. Don't be afraid to ask questions and seek out the answers yourself. Be optimistic that CF treatments have come so far...be grateful you have an early diagnosis so that you can hopefully slow the progression of the disease...love that little boy and make certain he grows to be a child who happens to have CF but can do all of the "normal" kid things!
(from one pet nurse to another, I believe!)
Hello and congrats on your new baby! I can guarantee you that many have read your post and sigh because it's so hard to respond with a definitive answer and then they may decide not to post at all! There's just no easy way to provide an adequate response.
My daughter is just over a year old and was hospitalized at two weeks of age due to respiratory issues. To this day, I don't know if she was hospitalized because she has CF, because she aspirated during delivery, because she aspirated during delivery and CF caused further complications, because there were HORRIBLE fires during that time, etc...etc. What I can say is that she's been doing well since, but slow on weight gain. Her current treatments consist of CPT 3x daily, enzymes, albuterol with each CPT session, and AquADEKS vitamins. She's a happy and silly little girl!!
Both of my daughter's mutations are ddf508 but the progression of her condition won't necessarily parallel that of another individual with the same mutations. Essentially, mutations don't tell you anything about the "severity" of CF. What is known is that homozygous ddf508 individuals are likely to exhibit both respiratory and digestive issues, but there are always exceptions. There are modifier genes that also play a role, of which, we have no exact knowledge of what those genes may be. Even siblings with the same mutations follow a separate progression.
It's very frustrating not to have a "guarantee" regarding how your son's CF may progress. He may be symptomatic OR asymptomatic with diligent care and treatments. He may experience many respiratory issues as a child and then fewer as he gets older. It's almost mind boggling. What is known is that you must follow a strict treatment regimen and do your own research. Don't expect a CF doctor to know all there is to treating CF. Don't be afraid to ask questions and seek out the answers yourself. Be optimistic that CF treatments have come so far...be grateful you have an early diagnosis so that you can hopefully slow the progression of the disease...love that little boy and make certain he grows to be a child who happens to have CF but can do all of the "normal" kid things!
(from one pet nurse to another, I believe!)
My daughter is just over a year old and was hospitalized at two weeks of age due to respiratory issues. To this day, I don't know if she was hospitalized because she has CF, because she aspirated during delivery, because she aspirated during delivery and CF caused further complications, because there were HORRIBLE fires during that time, etc...etc. What I can say is that she's been doing well since, but slow on weight gain. Her current treatments consist of CPT 3x daily, enzymes, albuterol with each CPT session, and AquADEKS vitamins. She's a happy and silly little girl!!
Both of my daughter's mutations are ddf508 but the progression of her condition won't necessarily parallel that of another individual with the same mutations. Essentially, mutations don't tell you anything about the "severity" of CF. What is known is that homozygous ddf508 individuals are likely to exhibit both respiratory and digestive issues, but there are always exceptions. There are modifier genes that also play a role, of which, we have no exact knowledge of what those genes may be. Even siblings with the same mutations follow a separate progression.
It's very frustrating not to have a "guarantee" regarding how your son's CF may progress. He may be symptomatic OR asymptomatic with diligent care and treatments. He may experience many respiratory issues as a child and then fewer as he gets older. It's almost mind boggling. What is known is that you must follow a strict treatment regimen and do your own research. Don't expect a CF doctor to know all there is to treating CF. Don't be afraid to ask questions and seek out the answers yourself. Be optimistic that CF treatments have come so far...be grateful you have an early diagnosis so that you can hopefully slow the progression of the disease...love that little boy and make certain he grows to be a child who happens to have CF but can do all of the "normal" kid things!
(from one pet nurse to another, I believe!)
Hello and congrats on your new baby! I can guarantee you that many have read your post and sigh because it's so hard to respond with a definitive answer and then they may decide not to post at all! There's just no easy way to provide an adequate response.
My daughter is just over a year old and was hospitalized at two weeks of age due to respiratory issues. To this day, I don't know if she was hospitalized because she has CF, because she aspirated during delivery, because she aspirated during delivery and CF caused further complications, because there were HORRIBLE fires during that time, etc...etc. What I can say is that she's been doing well since, but slow on weight gain. Her current treatments consist of CPT 3x daily, enzymes, albuterol with each CPT session, and AquADEKS vitamins. She's a happy and silly little girl!!
Both of my daughter's mutations are ddf508 but the progression of her condition won't necessarily parallel that of another individual with the same mutations. Essentially, mutations don't tell you anything about the "severity" of CF. What is known is that homozygous ddf508 individuals are likely to exhibit both respiratory and digestive issues, but there are always exceptions. There are modifier genes that also play a role, of which, we have no exact knowledge of what those genes may be. Even siblings with the same mutations follow a separate progression.
It's very frustrating not to have a "guarantee" regarding how your son's CF may progress. He may be symptomatic OR asymptomatic with diligent care and treatments. He may experience many respiratory issues as a child and then fewer as he gets older. It's almost mind boggling. What is known is that you must follow a strict treatment regimen and do your own research. Don't expect a CF doctor to know all there is to treating CF. Don't be afraid to ask questions and seek out the answers yourself. Be optimistic that CF treatments have come so far...be grateful you have an early diagnosis so that you can hopefully slow the progression of the disease...love that little boy and make certain he grows to be a child who happens to have CF but can do all of the "normal" kid things!
(from one pet nurse to another, I believe!)
My daughter is just over a year old and was hospitalized at two weeks of age due to respiratory issues. To this day, I don't know if she was hospitalized because she has CF, because she aspirated during delivery, because she aspirated during delivery and CF caused further complications, because there were HORRIBLE fires during that time, etc...etc. What I can say is that she's been doing well since, but slow on weight gain. Her current treatments consist of CPT 3x daily, enzymes, albuterol with each CPT session, and AquADEKS vitamins. She's a happy and silly little girl!!
Both of my daughter's mutations are ddf508 but the progression of her condition won't necessarily parallel that of another individual with the same mutations. Essentially, mutations don't tell you anything about the "severity" of CF. What is known is that homozygous ddf508 individuals are likely to exhibit both respiratory and digestive issues, but there are always exceptions. There are modifier genes that also play a role, of which, we have no exact knowledge of what those genes may be. Even siblings with the same mutations follow a separate progression.
It's very frustrating not to have a "guarantee" regarding how your son's CF may progress. He may be symptomatic OR asymptomatic with diligent care and treatments. He may experience many respiratory issues as a child and then fewer as he gets older. It's almost mind boggling. What is known is that you must follow a strict treatment regimen and do your own research. Don't expect a CF doctor to know all there is to treating CF. Don't be afraid to ask questions and seek out the answers yourself. Be optimistic that CF treatments have come so far...be grateful you have an early diagnosis so that you can hopefully slow the progression of the disease...love that little boy and make certain he grows to be a child who happens to have CF but can do all of the "normal" kid things!
(from one pet nurse to another, I believe!)
Hello and congrats on your new baby! I can guarantee you that many have read your post and sigh because it's so hard to respond with a definitive answer and then they may decide not to post at all! There's just no easy way to provide an adequate response.
My daughter is just over a year old and was hospitalized at two weeks of age due to respiratory issues. To this day, I don't know if she was hospitalized because she has CF, because she aspirated during delivery, because she aspirated during delivery and CF caused further complications, because there were HORRIBLE fires during that time, etc...etc. What I can say is that she's been doing well since, but slow on weight gain. Her current treatments consist of CPT 3x daily, enzymes, albuterol with each CPT session, and AquADEKS vitamins. She's a happy and silly little girl!!
Both of my daughter's mutations are ddf508 but the progression of her condition won't necessarily parallel that of another individual with the same mutations. Essentially, mutations don't tell you anything about the "severity" of CF. What is known is that homozygous ddf508 individuals are likely to exhibit both respiratory and digestive issues, but there are always exceptions. There are modifier genes that also play a role, of which, we have no exact knowledge of what those genes may be. Even siblings with the same mutations follow a separate progression.
It's very frustrating not to have a "guarantee" regarding how your son's CF may progress. He may be symptomatic OR asymptomatic with diligent care and treatments. He may experience many respiratory issues as a child and then fewer as he gets older. It's almost mind boggling. What is known is that you must follow a strict treatment regimen and do your own research. Don't expect a CF doctor to know all there is to treating CF. Don't be afraid to ask questions and seek out the answers yourself. Be optimistic that CF treatments have come so far...be grateful you have an early diagnosis so that you can hopefully slow the progression of the disease...love that little boy and make certain he grows to be a child who happens to have CF but can do all of the "normal" kid things!
(from one pet nurse to another, I believe!)
My daughter is just over a year old and was hospitalized at two weeks of age due to respiratory issues. To this day, I don't know if she was hospitalized because she has CF, because she aspirated during delivery, because she aspirated during delivery and CF caused further complications, because there were HORRIBLE fires during that time, etc...etc. What I can say is that she's been doing well since, but slow on weight gain. Her current treatments consist of CPT 3x daily, enzymes, albuterol with each CPT session, and AquADEKS vitamins. She's a happy and silly little girl!!
Both of my daughter's mutations are ddf508 but the progression of her condition won't necessarily parallel that of another individual with the same mutations. Essentially, mutations don't tell you anything about the "severity" of CF. What is known is that homozygous ddf508 individuals are likely to exhibit both respiratory and digestive issues, but there are always exceptions. There are modifier genes that also play a role, of which, we have no exact knowledge of what those genes may be. Even siblings with the same mutations follow a separate progression.
It's very frustrating not to have a "guarantee" regarding how your son's CF may progress. He may be symptomatic OR asymptomatic with diligent care and treatments. He may experience many respiratory issues as a child and then fewer as he gets older. It's almost mind boggling. What is known is that you must follow a strict treatment regimen and do your own research. Don't expect a CF doctor to know all there is to treating CF. Don't be afraid to ask questions and seek out the answers yourself. Be optimistic that CF treatments have come so far...be grateful you have an early diagnosis so that you can hopefully slow the progression of the disease...love that little boy and make certain he grows to be a child who happens to have CF but can do all of the "normal" kid things!
(from one pet nurse to another, I believe!)
Hello and congrats on your new baby! I can guarantee you that many have read your post and sigh because it's so hard to respond with a definitive answer and then they may decide not to post at all! There's just no easy way to provide an adequate response.
<br />
<br />My daughter is just over a year old and was hospitalized at two weeks of age due to respiratory issues. To this day, I don't know if she was hospitalized because she has CF, because she aspirated during delivery, because she aspirated during delivery and CF caused further complications, because there were HORRIBLE fires during that time, etc...etc. What I can say is that she's been doing well since, but slow on weight gain. Her current treatments consist of CPT 3x daily, enzymes, albuterol with each CPT session, and AquADEKS vitamins. She's a happy and silly little girl!!
<br />
<br />Both of my daughter's mutations are ddf508 but the progression of her condition won't necessarily parallel that of another individual with the same mutations. Essentially, mutations don't tell you anything about the "severity" of CF. What is known is that homozygous ddf508 individuals are likely to exhibit both respiratory and digestive issues, but there are always exceptions. There are modifier genes that also play a role, of which, we have no exact knowledge of what those genes may be. Even siblings with the same mutations follow a separate progression.
<br />
<br />It's very frustrating not to have a "guarantee" regarding how your son's CF may progress. He may be symptomatic OR asymptomatic with diligent care and treatments. He may experience many respiratory issues as a child and then fewer as he gets older. It's almost mind boggling. What is known is that you must follow a strict treatment regimen and do your own research. Don't expect a CF doctor to know all there is to treating CF. Don't be afraid to ask questions and seek out the answers yourself. Be optimistic that CF treatments have come so far...be grateful you have an early diagnosis so that you can hopefully slow the progression of the disease...love that little boy and make certain he grows to be a child who happens to have CF but can do all of the "normal" kid things!
<br />
<br />(from one pet nurse to another, I believe!)
<br />
<br />My daughter is just over a year old and was hospitalized at two weeks of age due to respiratory issues. To this day, I don't know if she was hospitalized because she has CF, because she aspirated during delivery, because she aspirated during delivery and CF caused further complications, because there were HORRIBLE fires during that time, etc...etc. What I can say is that she's been doing well since, but slow on weight gain. Her current treatments consist of CPT 3x daily, enzymes, albuterol with each CPT session, and AquADEKS vitamins. She's a happy and silly little girl!!
<br />
<br />Both of my daughter's mutations are ddf508 but the progression of her condition won't necessarily parallel that of another individual with the same mutations. Essentially, mutations don't tell you anything about the "severity" of CF. What is known is that homozygous ddf508 individuals are likely to exhibit both respiratory and digestive issues, but there are always exceptions. There are modifier genes that also play a role, of which, we have no exact knowledge of what those genes may be. Even siblings with the same mutations follow a separate progression.
<br />
<br />It's very frustrating not to have a "guarantee" regarding how your son's CF may progress. He may be symptomatic OR asymptomatic with diligent care and treatments. He may experience many respiratory issues as a child and then fewer as he gets older. It's almost mind boggling. What is known is that you must follow a strict treatment regimen and do your own research. Don't expect a CF doctor to know all there is to treating CF. Don't be afraid to ask questions and seek out the answers yourself. Be optimistic that CF treatments have come so far...be grateful you have an early diagnosis so that you can hopefully slow the progression of the disease...love that little boy and make certain he grows to be a child who happens to have CF but can do all of the "normal" kid things!
<br />
<br />(from one pet nurse to another, I believe!)