Polymorphism

Daddy2Noah · Jun 20, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: combo76

That does really help. Thank you. Why is CF so confusing? And what is even more sad, is that I think at this point - I value the knowledge of this board more than I value the drs. at this point.

This Dr. is also at CHOP. But is a GI dr. So I have the results sent to the CF center there - and have them confirm whatever it is they need to confirm. I feel as though they are not sure in the results.

Especially since they couldn't answer nor did they know what polymorphisms are.</end quote></div>

Yeah, it's really tough sometimes. I once had a very good friend of mine, who happens to also be a very good doctor (not CF related), tell me that everything they do is a guess. They make the best decision they know how to make, based on years of education and trial and error, and they base everything they do on the sypmtoms at hand and the experience they have, but in the end... it's an educated guess as best. No matter how much research they do, they'll never know everything about anything.

CF is a disease that has such very low numbers on a global level that they really don't have a ton to learn from.
I mean, don't get me wrong, they know a ton about this disease that they didn't know just 5 years ago, but there's still a very tiny sample of the population that is affected by CF.

That's my take on it anyway. When my son was diagnosed, I felt like punching a wall as hard as I could and yet the docs seemed almost excited by it all. I straight out asked them what about this could possibly bring them even a tiny amount of happyness? One of them looked me straight in the eye and said "Your son is 8 days old and we know that he has CF. As of this moment, he's our best shot at curing this disease"

I realized right then that they want to cure this as bad as I want them to cure this... but that they need to learn so much more about it in order to get there... and my family is now a part of that learning for them...

Nobody wants to be a guinea pig, but without samples to learn from, progress isn't made. I just pray that if Noah doesn't live to see a cure for this disease, he can at least be part of the reason that a cure is found someday.

Daddy2Noah · Jun 20, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: combo76

That does really help. Thank you. Why is CF so confusing? And what is even more sad, is that I think at this point - I value the knowledge of this board more than I value the drs. at this point.

This Dr. is also at CHOP. But is a GI dr. So I have the results sent to the CF center there - and have them confirm whatever it is they need to confirm. I feel as though they are not sure in the results.

Especially since they couldn't answer nor did they know what polymorphisms are.</end quote></div>

Yeah, it's really tough sometimes. I once had a very good friend of mine, who happens to also be a very good doctor (not CF related), tell me that everything they do is a guess. They make the best decision they know how to make, based on years of education and trial and error, and they base everything they do on the sypmtoms at hand and the experience they have, but in the end... it's an educated guess as best. No matter how much research they do, they'll never know everything about anything.

CF is a disease that has such very low numbers on a global level that they really don't have a ton to learn from.
I mean, don't get me wrong, they know a ton about this disease that they didn't know just 5 years ago, but there's still a very tiny sample of the population that is affected by CF.

That's my take on it anyway. When my son was diagnosed, I felt like punching a wall as hard as I could and yet the docs seemed almost excited by it all. I straight out asked them what about this could possibly bring them even a tiny amount of happyness? One of them looked me straight in the eye and said "Your son is 8 days old and we know that he has CF. As of this moment, he's our best shot at curing this disease"

I realized right then that they want to cure this as bad as I want them to cure this... but that they need to learn so much more about it in order to get there... and my family is now a part of that learning for them...

Nobody wants to be a guinea pig, but without samples to learn from, progress isn't made. I just pray that if Noah doesn't live to see a cure for this disease, he can at least be part of the reason that a cure is found someday.

Daddy2Noah · Jun 20, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: combo76

That does really help. Thank you. Why is CF so confusing? And what is even more sad, is that I think at this point - I value the knowledge of this board more than I value the drs. at this point.

This Dr. is also at CHOP. But is a GI dr. So I have the results sent to the CF center there - and have them confirm whatever it is they need to confirm. I feel as though they are not sure in the results.

Especially since they couldn't answer nor did they know what polymorphisms are.</end quote></div>

Yeah, it's really tough sometimes. I once had a very good friend of mine, who happens to also be a very good doctor (not CF related), tell me that everything they do is a guess. They make the best decision they know how to make, based on years of education and trial and error, and they base everything they do on the sypmtoms at hand and the experience they have, but in the end... it's an educated guess as best. No matter how much research they do, they'll never know everything about anything.

CF is a disease that has such very low numbers on a global level that they really don't have a ton to learn from.
I mean, don't get me wrong, they know a ton about this disease that they didn't know just 5 years ago, but there's still a very tiny sample of the population that is affected by CF.

That's my take on it anyway. When my son was diagnosed, I felt like punching a wall as hard as I could and yet the docs seemed almost excited by it all. I straight out asked them what about this could possibly bring them even a tiny amount of happyness? One of them looked me straight in the eye and said "Your son is 8 days old and we know that he has CF. As of this moment, he's our best shot at curing this disease"

I realized right then that they want to cure this as bad as I want them to cure this... but that they need to learn so much more about it in order to get there... and my family is now a part of that learning for them...

Nobody wants to be a guinea pig, but without samples to learn from, progress isn't made. I just pray that if Noah doesn't live to see a cure for this disease, he can at least be part of the reason that a cure is found someday.

Daddy2Noah · Jun 20, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: combo76

That does really help. Thank you. Why is CF so confusing? And what is even more sad, is that I think at this point - I value the knowledge of this board more than I value the drs. at this point.

This Dr. is also at CHOP. But is a GI dr. So I have the results sent to the CF center there - and have them confirm whatever it is they need to confirm. I feel as though they are not sure in the results.

Especially since they couldn't answer nor did they know what polymorphisms are.</end quote>

Yeah, it's really tough sometimes. I once had a very good friend of mine, who happens to also be a very good doctor (not CF related), tell me that everything they do is a guess. They make the best decision they know how to make, based on years of education and trial and error, and they base everything they do on the sypmtoms at hand and the experience they have, but in the end... it's an educated guess as best. No matter how much research they do, they'll never know everything about anything.

CF is a disease that has such very low numbers on a global level that they really don't have a ton to learn from.
I mean, don't get me wrong, they know a ton about this disease that they didn't know just 5 years ago, but there's still a very tiny sample of the population that is affected by CF.

That's my take on it anyway. When my son was diagnosed, I felt like punching a wall as hard as I could and yet the docs seemed almost excited by it all. I straight out asked them what about this could possibly bring them even a tiny amount of happyness? One of them looked me straight in the eye and said "Your son is 8 days old and we know that he has CF. As of this moment, he's our best shot at curing this disease"

I realized right then that they want to cure this as bad as I want them to cure this... but that they need to learn so much more about it in order to get there... and my family is now a part of that learning for them...

Nobody wants to be a guinea pig, but without samples to learn from, progress isn't made. I just pray that if Noah doesn't live to see a cure for this disease, he can at least be part of the reason that a cure is found someday.

Daddy2Noah · Jun 20, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: combo76
 
 That does really help. Thank you. Why is CF so confusing? And what is even more sad, is that I think at this point - I value the knowledge of this board more than I value the drs. at this point.
 
 
 
 This Dr. is also at CHOP. But is a GI dr. So I have the results sent to the CF center there - and have them confirm whatever it is they need to confirm. I feel as though they are not sure in the results.
 
 
 
 Especially since they couldn't answer nor did they know what polymorphisms are.</end quote>
 
 Yeah, it's really tough sometimes. I once had a very good friend of mine, who happens to also be a very good doctor (not CF related), tell me that everything they do is a guess. They make the best decision they know how to make, based on years of education and trial and error, and they base everything they do on the sypmtoms at hand and the experience they have, but in the end... it's an educated guess as best. No matter how much research they do, they'll never know everything about anything.
 
 CF is a disease that has such very low numbers on a global level that they really don't have a ton to learn from.
 I mean, don't get me wrong, they know a ton about this disease that they didn't know just 5 years ago, but there's still a very tiny sample of the population that is affected by CF.
 
 That's my take on it anyway. When my son was diagnosed, I felt like punching a wall as hard as I could and yet the docs seemed almost excited by it all. I straight out asked them what about this could possibly bring them even a tiny amount of happyness? One of them looked me straight in the eye and said "Your son is 8 days old and we know that he has CF. As of this moment, he's our best shot at curing this disease"
 
 I realized right then that they want to cure this as bad as I want them to cure this... but that they need to learn so much more about it in order to get there... and my family is now a part of that learning for them...
 
 Nobody wants to be a guinea pig, but without samples to learn from, progress isn't made. I just pray that if Noah doesn't live to see a cure for this disease, he can at least be part of the reason that a cure is found someday.

combo76 · Jun 20, 2008

You are a pretty remarkable person, as well as your son.

I don't know how to respond to your reply, it somewhat took my breath away, and made me well up.

Thank you for taking time out of your day to try and lend
some knowledge my way. I appreciate it.

combo76 · Jun 20, 2008

You are a pretty remarkable person, as well as your son.

I don't know how to respond to your reply, it somewhat took my breath away, and made me well up.

Thank you for taking time out of your day to try and lend
some knowledge my way. I appreciate it.

combo76 · Jun 20, 2008

You are a pretty remarkable person, as well as your son.

I don't know how to respond to your reply, it somewhat took my breath away, and made me well up.

Thank you for taking time out of your day to try and lend
some knowledge my way. I appreciate it.

combo76 · Jun 20, 2008

You are a pretty remarkable person, as well as your son.

I don't know how to respond to your reply, it somewhat took my breath away, and made me well up.

Thank you for taking time out of your day to try and lend
some knowledge my way. I appreciate it.

combo76 · Jun 20, 2008

You are a pretty remarkable person, as well as your son.
 
 I don't know how to respond to your reply, it somewhat took my breath away, and made me well up.
 
 Thank you for taking time out of your day to try and lend
 some knowledge my way. I appreciate it.

Daddy2Noah · Jun 20, 2008

Heya, thanks <img src="">
You're remarkable as well! Any mom who gets on here and researches and isn't satisfied with the answers she's getting is a mom I'd be proud to have myself <img src="">

The folks on this forum helped me a ton when Noah was born. I had so many questions and so many thoughts... "overwhelmed" was an understatement. This site is priceless.

Something I've learned about CHoP while dealing with them over the past 2 years (and I am sure this applies to all hospitals), don't stop asking to talk to other people there until you understand what they are telling you completely. Each person there has their own way of exlpaining things, their own area that they focus on, etc... and you're likely to get a confusing, scattered and uncertain sounding answer from one person and then a completely understandable answer to the same question from another person there.

I spent a lot of time second guessing them, wondering if they were just treating Noah by the testbook instead of his individual case, but then I realized that he's been healthy, he's doing really well and probably has a lot to do with how aggressive they went after this with him.

At 8 days old, we were spending a week at chop and I was giving him his new enzymes. It was abuot 2am and he was about to have a bottle. This was my first dose of enzymes I was giving him (the doctor gave him one earlier that night). I was shoveling this spoonful of applesauce with the enzymes scattered over it, into his mouth. 8 days old. I burst into tears. I lost it. I thought "this poor child". He's being forced to grow up and he was just born. How could they make him do this? No 8 day old should have to learn to eat from a spoon, right? Well, as fast as that came over me, Noah looked right at me, opened his little mouth, took the entire contents in one gulp, swallowed, smiled real big at me and let out the biggest burp I ever heard! I laughed! I thanked him for understanding where my mind was at that moment, breaking me from that train of thought, and then I made up my mind that I was going to spend the rest of my life making this child happy, laugh, sing, dance, love, etc...

Hang in there! You are going through a lot right now. There's a lot to learn and gazillions of different opinions on everything about this. But I truly believe that if you keep doing exactly what you are doing, being the best mommy ever and searching for the right answers, you'll come upon the answers that make sense for your specific situation. In the meantime, you and your family will be in our thoughts and prayers, and let's keep praying that Polymorphisms are exactly what they told me they are... which means that your daughter might have some mild symptoms of CF like allergies and small sinus issues, but no major issues... ever. <img src="">

Daddy2Noah · Jun 20, 2008

Heya, thanks <img src="">
You're remarkable as well! Any mom who gets on here and researches and isn't satisfied with the answers she's getting is a mom I'd be proud to have myself <img src="">

The folks on this forum helped me a ton when Noah was born. I had so many questions and so many thoughts... "overwhelmed" was an understatement. This site is priceless.

Something I've learned about CHoP while dealing with them over the past 2 years (and I am sure this applies to all hospitals), don't stop asking to talk to other people there until you understand what they are telling you completely. Each person there has their own way of exlpaining things, their own area that they focus on, etc... and you're likely to get a confusing, scattered and uncertain sounding answer from one person and then a completely understandable answer to the same question from another person there.

I spent a lot of time second guessing them, wondering if they were just treating Noah by the testbook instead of his individual case, but then I realized that he's been healthy, he's doing really well and probably has a lot to do with how aggressive they went after this with him.

At 8 days old, we were spending a week at chop and I was giving him his new enzymes. It was abuot 2am and he was about to have a bottle. This was my first dose of enzymes I was giving him (the doctor gave him one earlier that night). I was shoveling this spoonful of applesauce with the enzymes scattered over it, into his mouth. 8 days old. I burst into tears. I lost it. I thought "this poor child". He's being forced to grow up and he was just born. How could they make him do this? No 8 day old should have to learn to eat from a spoon, right? Well, as fast as that came over me, Noah looked right at me, opened his little mouth, took the entire contents in one gulp, swallowed, smiled real big at me and let out the biggest burp I ever heard! I laughed! I thanked him for understanding where my mind was at that moment, breaking me from that train of thought, and then I made up my mind that I was going to spend the rest of my life making this child happy, laugh, sing, dance, love, etc...

Hang in there! You are going through a lot right now. There's a lot to learn and gazillions of different opinions on everything about this. But I truly believe that if you keep doing exactly what you are doing, being the best mommy ever and searching for the right answers, you'll come upon the answers that make sense for your specific situation. In the meantime, you and your family will be in our thoughts and prayers, and let's keep praying that Polymorphisms are exactly what they told me they are... which means that your daughter might have some mild symptoms of CF like allergies and small sinus issues, but no major issues... ever. <img src="">

Daddy2Noah · Jun 20, 2008

Heya, thanks <img src="">
You're remarkable as well! Any mom who gets on here and researches and isn't satisfied with the answers she's getting is a mom I'd be proud to have myself <img src="">

The folks on this forum helped me a ton when Noah was born. I had so many questions and so many thoughts... "overwhelmed" was an understatement. This site is priceless.

Something I've learned about CHoP while dealing with them over the past 2 years (and I am sure this applies to all hospitals), don't stop asking to talk to other people there until you understand what they are telling you completely. Each person there has their own way of exlpaining things, their own area that they focus on, etc... and you're likely to get a confusing, scattered and uncertain sounding answer from one person and then a completely understandable answer to the same question from another person there.

I spent a lot of time second guessing them, wondering if they were just treating Noah by the testbook instead of his individual case, but then I realized that he's been healthy, he's doing really well and probably has a lot to do with how aggressive they went after this with him.

At 8 days old, we were spending a week at chop and I was giving him his new enzymes. It was abuot 2am and he was about to have a bottle. This was my first dose of enzymes I was giving him (the doctor gave him one earlier that night). I was shoveling this spoonful of applesauce with the enzymes scattered over it, into his mouth. 8 days old. I burst into tears. I lost it. I thought "this poor child". He's being forced to grow up and he was just born. How could they make him do this? No 8 day old should have to learn to eat from a spoon, right? Well, as fast as that came over me, Noah looked right at me, opened his little mouth, took the entire contents in one gulp, swallowed, smiled real big at me and let out the biggest burp I ever heard! I laughed! I thanked him for understanding where my mind was at that moment, breaking me from that train of thought, and then I made up my mind that I was going to spend the rest of my life making this child happy, laugh, sing, dance, love, etc...

Hang in there! You are going through a lot right now. There's a lot to learn and gazillions of different opinions on everything about this. But I truly believe that if you keep doing exactly what you are doing, being the best mommy ever and searching for the right answers, you'll come upon the answers that make sense for your specific situation. In the meantime, you and your family will be in our thoughts and prayers, and let's keep praying that Polymorphisms are exactly what they told me they are... which means that your daughter might have some mild symptoms of CF like allergies and small sinus issues, but no major issues... ever. <img src="">

Daddy2Noah · Jun 20, 2008

Heya, thanks <img src="">
You're remarkable as well! Any mom who gets on here and researches and isn't satisfied with the answers she's getting is a mom I'd be proud to have myself <img src="">

The folks on this forum helped me a ton when Noah was born. I had so many questions and so many thoughts... "overwhelmed" was an understatement. This site is priceless.

Something I've learned about CHoP while dealing with them over the past 2 years (and I am sure this applies to all hospitals), don't stop asking to talk to other people there until you understand what they are telling you completely. Each person there has their own way of exlpaining things, their own area that they focus on, etc... and you're likely to get a confusing, scattered and uncertain sounding answer from one person and then a completely understandable answer to the same question from another person there.

I spent a lot of time second guessing them, wondering if they were just treating Noah by the testbook instead of his individual case, but then I realized that he's been healthy, he's doing really well and probably has a lot to do with how aggressive they went after this with him.

At 8 days old, we were spending a week at chop and I was giving him his new enzymes. It was abuot 2am and he was about to have a bottle. This was my first dose of enzymes I was giving him (the doctor gave him one earlier that night). I was shoveling this spoonful of applesauce with the enzymes scattered over it, into his mouth. 8 days old. I burst into tears. I lost it. I thought "this poor child". He's being forced to grow up and he was just born. How could they make him do this? No 8 day old should have to learn to eat from a spoon, right? Well, as fast as that came over me, Noah looked right at me, opened his little mouth, took the entire contents in one gulp, swallowed, smiled real big at me and let out the biggest burp I ever heard! I laughed! I thanked him for understanding where my mind was at that moment, breaking me from that train of thought, and then I made up my mind that I was going to spend the rest of my life making this child happy, laugh, sing, dance, love, etc...

Hang in there! You are going through a lot right now. There's a lot to learn and gazillions of different opinions on everything about this. But I truly believe that if you keep doing exactly what you are doing, being the best mommy ever and searching for the right answers, you'll come upon the answers that make sense for your specific situation. In the meantime, you and your family will be in our thoughts and prayers, and let's keep praying that Polymorphisms are exactly what they told me they are... which means that your daughter might have some mild symptoms of CF like allergies and small sinus issues, but no major issues... ever. <img src="">

Daddy2Noah · Jun 20, 2008

Heya, thanks <img src="">
 You're remarkable as well! Any mom who gets on here and researches and isn't satisfied with the answers she's getting is a mom I'd be proud to have myself <img src="">
 
 The folks on this forum helped me a ton when Noah was born. I had so many questions and so many thoughts... "overwhelmed" was an understatement. This site is priceless.
 
 Something I've learned about CHoP while dealing with them over the past 2 years (and I am sure this applies to all hospitals), don't stop asking to talk to other people there until you understand what they are telling you completely. Each person there has their own way of exlpaining things, their own area that they focus on, etc... and you're likely to get a confusing, scattered and uncertain sounding answer from one person and then a completely understandable answer to the same question from another person there.
 
 I spent a lot of time second guessing them, wondering if they were just treating Noah by the testbook instead of his individual case, but then I realized that he's been healthy, he's doing really well and probably has a lot to do with how aggressive they went after this with him.
 
 At 8 days old, we were spending a week at chop and I was giving him his new enzymes. It was abuot 2am and he was about to have a bottle. This was my first dose of enzymes I was giving him (the doctor gave him one earlier that night). I was shoveling this spoonful of applesauce with the enzymes scattered over it, into his mouth. 8 days old. I burst into tears. I lost it. I thought "this poor child". He's being forced to grow up and he was just born. How could they make him do this? No 8 day old should have to learn to eat from a spoon, right? Well, as fast as that came over me, Noah looked right at me, opened his little mouth, took the entire contents in one gulp, swallowed, smiled real big at me and let out the biggest burp I ever heard! I laughed! I thanked him for understanding where my mind was at that moment, breaking me from that train of thought, and then I made up my mind that I was going to spend the rest of my life making this child happy, laugh, sing, dance, love, etc...
 
 Hang in there! You are going through a lot right now. There's a lot to learn and gazillions of different opinions on everything about this. But I truly believe that if you keep doing exactly what you are doing, being the best mommy ever and searching for the right answers, you'll come upon the answers that make sense for your specific situation. In the meantime, you and your family will be in our thoughts and prayers, and let's keep praying that Polymorphisms are exactly what they told me they are... which means that your daughter might have some mild symptoms of CF like allergies and small sinus issues, but no major issues... ever. <img src="">

amyr · Jun 21, 2008