Newly diagnosed and scared to death

SuperRyan · Mar 25, 2008

Hello

My son was diagnosed at 10months, hospitilized once, cultured PA twice (low strain) and erradicated with cipro and tobi. He has cultured positive ever since. He is will be turning 4 in June. YAY!. This site has been a true blessing. There is nothing better than conversing with people who understand exactly what you are going through. I take it you live in the Maryland area since you go to Hopkins?? I live in Germantown Maryland and we go to Children's in D.C. Please feel free to PM me or email me directly Regina.m.clavelli@medstar.net if you would like to talk further.

My little guy is my true angel and there is nothing that I would not do for him. So what I choose to do is give him the best life possible and let him experience all that life has to offer. Whatever happens is going to happen but for now we will live each day to the fullest.

Just enjoy your little one. It will truly become part of your everyday life, very routine. It will get easier but you will still have your days. Allow yourself this time to cry and strength will come.

SuperRyan · Mar 25, 2008

Hello

My son was diagnosed at 10months, hospitilized once, cultured PA twice (low strain) and erradicated with cipro and tobi. He has cultured positive ever since. He is will be turning 4 in June. YAY!. This site has been a true blessing. There is nothing better than conversing with people who understand exactly what you are going through. I take it you live in the Maryland area since you go to Hopkins?? I live in Germantown Maryland and we go to Children's in D.C. Please feel free to PM me or email me directly Regina.m.clavelli@medstar.net if you would like to talk further.

My little guy is my true angel and there is nothing that I would not do for him. So what I choose to do is give him the best life possible and let him experience all that life has to offer. Whatever happens is going to happen but for now we will live each day to the fullest.

Just enjoy your little one. It will truly become part of your everyday life, very routine. It will get easier but you will still have your days. Allow yourself this time to cry and strength will come.

SuperRyan · Mar 25, 2008

Hello

My son was diagnosed at 10months, hospitilized once, cultured PA twice (low strain) and erradicated with cipro and tobi. He has cultured positive ever since. He is will be turning 4 in June. YAY!. This site has been a true blessing. There is nothing better than conversing with people who understand exactly what you are going through. I take it you live in the Maryland area since you go to Hopkins?? I live in Germantown Maryland and we go to Children's in D.C. Please feel free to PM me or email me directly Regina.m.clavelli@medstar.net if you would like to talk further.

My little guy is my true angel and there is nothing that I would not do for him. So what I choose to do is give him the best life possible and let him experience all that life has to offer. Whatever happens is going to happen but for now we will live each day to the fullest.

Just enjoy your little one. It will truly become part of your everyday life, very routine. It will get easier but you will still have your days. Allow yourself this time to cry and strength will come.

SuperRyan · Mar 25, 2008

Hello

My son was diagnosed at 10months, hospitilized once, cultured PA twice (low strain) and erradicated with cipro and tobi. He has cultured positive ever since. He is will be turning 4 in June. YAY!. This site has been a true blessing. There is nothing better than conversing with people who understand exactly what you are going through. I take it you live in the Maryland area since you go to Hopkins?? I live in Germantown Maryland and we go to Children's in D.C. Please feel free to PM me or email me directly Regina.m.clavelli@medstar.net if you would like to talk further.

My little guy is my true angel and there is nothing that I would not do for him. So what I choose to do is give him the best life possible and let him experience all that life has to offer. Whatever happens is going to happen but for now we will live each day to the fullest.

Just enjoy your little one. It will truly become part of your everyday life, very routine. It will get easier but you will still have your days. Allow yourself this time to cry and strength will come.

SuperRyan · Mar 25, 2008

Hello
 
 My son was diagnosed at 10months, hospitilized once, cultured PA twice (low strain) and erradicated with cipro and tobi. He has cultured positive ever since. He is will be turning 4 in June. YAY!. This site has been a true blessing. There is nothing better than conversing with people who understand exactly what you are going through. I take it you live in the Maryland area since you go to Hopkins?? I live in Germantown Maryland and we go to Children's in D.C. Please feel free to PM me or email me directly Regina.m.clavelli@medstar.net if you would like to talk further.
 
 My little guy is my true angel and there is nothing that I would not do for him. So what I choose to do is give him the best life possible and let him experience all that life has to offer. Whatever happens is going to happen but for now we will live each day to the fullest.
 
 Just enjoy your little one. It will truly become part of your everyday life, very routine. It will get easier but you will still have your days. Allow yourself this time to cry and strength will come.

CowTown · Mar 25, 2008

Hi Billsmom,

I can imagine this is a very scary time for you, but like someone mentioned above, now that he is diagnosed and can start all the right treatment he has a great chance of getting things under control. All the different medicines and therapies that are available for us CFers are what's crucial for staying healthy, maintaining health and getting over exacerbations, ie: pancreatic enzymes (a must in order to gain and keep the weight on), Albuterol, TOBI, etc.

I was diagnosed after 1 year of my parents going back and forth with the doctors on what could possibly be wrong. Once I was diagnosed, things started falling into place and I led a very active, fun, childhood (and on through adulthood). I first got PA when I was young, maybe around 5 or 8 years old, so I've had it a long time now. There are great meds to combat it, but remember it will be a fight. There will be ups and there will be lows, it is a constant battle you have to endure. We have to stay on top of all the medicines and routines as best we can in order to keep PA and other bugs away, but the good news is that the meds usually do a really good job at getting things under control (at least that's how it's been for me). I'm 34 now and still deal with PA, but I love my life, and try to enjoy every day. CF will be a new commitment in your lives, but there's a course of action you can take and follow along the way, which is a good thing. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I hope your little boy continues gaining and TOBI kicks the PA's butt!

CowTown · Mar 25, 2008

Hi Billsmom,

I can imagine this is a very scary time for you, but like someone mentioned above, now that he is diagnosed and can start all the right treatment he has a great chance of getting things under control. All the different medicines and therapies that are available for us CFers are what's crucial for staying healthy, maintaining health and getting over exacerbations, ie: pancreatic enzymes (a must in order to gain and keep the weight on), Albuterol, TOBI, etc.

I was diagnosed after 1 year of my parents going back and forth with the doctors on what could possibly be wrong. Once I was diagnosed, things started falling into place and I led a very active, fun, childhood (and on through adulthood). I first got PA when I was young, maybe around 5 or 8 years old, so I've had it a long time now. There are great meds to combat it, but remember it will be a fight. There will be ups and there will be lows, it is a constant battle you have to endure. We have to stay on top of all the medicines and routines as best we can in order to keep PA and other bugs away, but the good news is that the meds usually do a really good job at getting things under control (at least that's how it's been for me). I'm 34 now and still deal with PA, but I love my life, and try to enjoy every day. CF will be a new commitment in your lives, but there's a course of action you can take and follow along the way, which is a good thing. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I hope your little boy continues gaining and TOBI kicks the PA's butt!

CowTown · Mar 25, 2008

Hi Billsmom,

I can imagine this is a very scary time for you, but like someone mentioned above, now that he is diagnosed and can start all the right treatment he has a great chance of getting things under control. All the different medicines and therapies that are available for us CFers are what's crucial for staying healthy, maintaining health and getting over exacerbations, ie: pancreatic enzymes (a must in order to gain and keep the weight on), Albuterol, TOBI, etc.

I was diagnosed after 1 year of my parents going back and forth with the doctors on what could possibly be wrong. Once I was diagnosed, things started falling into place and I led a very active, fun, childhood (and on through adulthood). I first got PA when I was young, maybe around 5 or 8 years old, so I've had it a long time now. There are great meds to combat it, but remember it will be a fight. There will be ups and there will be lows, it is a constant battle you have to endure. We have to stay on top of all the medicines and routines as best we can in order to keep PA and other bugs away, but the good news is that the meds usually do a really good job at getting things under control (at least that's how it's been for me). I'm 34 now and still deal with PA, but I love my life, and try to enjoy every day. CF will be a new commitment in your lives, but there's a course of action you can take and follow along the way, which is a good thing. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I hope your little boy continues gaining and TOBI kicks the PA's butt!

CowTown · Mar 25, 2008

Hi Billsmom,

I can imagine this is a very scary time for you, but like someone mentioned above, now that he is diagnosed and can start all the right treatment he has a great chance of getting things under control. All the different medicines and therapies that are available for us CFers are what's crucial for staying healthy, maintaining health and getting over exacerbations, ie: pancreatic enzymes (a must in order to gain and keep the weight on), Albuterol, TOBI, etc.

I was diagnosed after 1 year of my parents going back and forth with the doctors on what could possibly be wrong. Once I was diagnosed, things started falling into place and I led a very active, fun, childhood (and on through adulthood). I first got PA when I was young, maybe around 5 or 8 years old, so I've had it a long time now. There are great meds to combat it, but remember it will be a fight. There will be ups and there will be lows, it is a constant battle you have to endure. We have to stay on top of all the medicines and routines as best we can in order to keep PA and other bugs away, but the good news is that the meds usually do a really good job at getting things under control (at least that's how it's been for me). I'm 34 now and still deal with PA, but I love my life, and try to enjoy every day. CF will be a new commitment in your lives, but there's a course of action you can take and follow along the way, which is a good thing. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I hope your little boy continues gaining and TOBI kicks the PA's butt!

CowTown · Mar 25, 2008

Hi Billsmom,
 
 I can imagine this is a very scary time for you, but like someone mentioned above, now that he is diagnosed and can start all the right treatment he has a great chance of getting things under control. All the different medicines and therapies that are available for us CFers are what's crucial for staying healthy, maintaining health and getting over exacerbations, ie: pancreatic enzymes (a must in order to gain and keep the weight on), Albuterol, TOBI, etc.
 
 I was diagnosed after 1 year of my parents going back and forth with the doctors on what could possibly be wrong. Once I was diagnosed, things started falling into place and I led a very active, fun, childhood (and on through adulthood). I first got PA when I was young, maybe around 5 or 8 years old, so I've had it a long time now. There are great meds to combat it, but remember it will be a fight. There will be ups and there will be lows, it is a constant battle you have to endure. We have to stay on top of all the medicines and routines as best we can in order to keep PA and other bugs away, but the good news is that the meds usually do a really good job at getting things under control (at least that's how it's been for me). I'm 34 now and still deal with PA, but I love my life, and try to enjoy every day. CF will be a new commitment in your lives, but there's a course of action you can take and follow along the way, which is a good thing. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
 I hope your little boy continues gaining and TOBI kicks the PA's butt!

Terry · Mar 25, 2008

My step-daughter also is seen at Hopkins. They are wonderful there. She was misdiagnosed with Asthma for almost 4 years, and also cultured PA at diagnosis. She has cultured PA one other time, but both times they got rid of it with a total of 56 days of Tobi and a round of Cipro.

This might not make a lot of sense right now, but be glad you got your CF diagnosis. CF is a progressive disease that has many treatments to prevent lung damage. The sooner you find out the sooner you can learn how to keep your child healthy.

I have said this so many times already, but Marissa's life is so much better with CF than it was with "Asthma." She is like any other child now that she is on the right meds/treatments. You would never guess by looking at her that she has CF.

Good Luck!

Terry

Terry · Mar 25, 2008

My step-daughter also is seen at Hopkins. They are wonderful there. She was misdiagnosed with Asthma for almost 4 years, and also cultured PA at diagnosis. She has cultured PA one other time, but both times they got rid of it with a total of 56 days of Tobi and a round of Cipro.

This might not make a lot of sense right now, but be glad you got your CF diagnosis. CF is a progressive disease that has many treatments to prevent lung damage. The sooner you find out the sooner you can learn how to keep your child healthy.

I have said this so many times already, but Marissa's life is so much better with CF than it was with "Asthma." She is like any other child now that she is on the right meds/treatments. You would never guess by looking at her that she has CF.

Good Luck!

Terry

Terry · Mar 25, 2008

My step-daughter also is seen at Hopkins. They are wonderful there. She was misdiagnosed with Asthma for almost 4 years, and also cultured PA at diagnosis. She has cultured PA one other time, but both times they got rid of it with a total of 56 days of Tobi and a round of Cipro.

This might not make a lot of sense right now, but be glad you got your CF diagnosis. CF is a progressive disease that has many treatments to prevent lung damage. The sooner you find out the sooner you can learn how to keep your child healthy.

I have said this so many times already, but Marissa's life is so much better with CF than it was with "Asthma." She is like any other child now that she is on the right meds/treatments. You would never guess by looking at her that she has CF.

Good Luck!

Terry

Terry · Mar 25, 2008

My step-daughter also is seen at Hopkins. They are wonderful there. She was misdiagnosed with Asthma for almost 4 years, and also cultured PA at diagnosis. She has cultured PA one other time, but both times they got rid of it with a total of 56 days of Tobi and a round of Cipro.

This might not make a lot of sense right now, but be glad you got your CF diagnosis. CF is a progressive disease that has many treatments to prevent lung damage. The sooner you find out the sooner you can learn how to keep your child healthy.

I have said this so many times already, but Marissa's life is so much better with CF than it was with "Asthma." She is like any other child now that she is on the right meds/treatments. You would never guess by looking at her that she has CF.

Good Luck!

Terry

Terry · Mar 25, 2008

My step-daughter also is seen at Hopkins. They are wonderful there. She was misdiagnosed with Asthma for almost 4 years, and also cultured PA at diagnosis. She has cultured PA one other time, but both times they got rid of it with a total of 56 days of Tobi and a round of Cipro.
 
 This might not make a lot of sense right now, but be glad you got your CF diagnosis. CF is a progressive disease that has many treatments to prevent lung damage. The sooner you find out the sooner you can learn how to keep your child healthy.
 
 I have said this so many times already, but Marissa's life is so much better with CF than it was with "Asthma." She is like any other child now that she is on the right meds/treatments. You would never guess by looking at her that she has CF.
 
 Good Luck!
 
 Terry

running4life · Mar 30, 2008

I do not want to say "I am sorry" or those things that I always hate when people tell me. I want to offer you hope.

I just turned 21 years old and I am training for a marathon. I am in the best shape of my life and am pretty much healthier than most people without CF. By the grace of God I am who I am today with Cystic Fibrosis and Type One Diabetes. I am not saying this to boast because I know how other people with CF are in their own walk of health.

This is not a death sentence for your son. He will become a strong little guy through this and you will see his strength and endurance in times of need. You will have so much inspiration from him, I am sure of it.

Stay strong for him, he will need you. Also, TOBI and Pulmozyme can be extremely expensive as well as his enzymes. There are programs to assist you in paying for his medicines, even if you make a decent amount of money. It is still a strain, so ask a social worker at your hospital if you would like to apply.

Your son will learn to enjoy life more and more each day he is given and he can live a complete and full life. Some advice, don't "feel sorry" for him because that always made me feel like a sick child when in reality I was just not feeling good that day. Stay positive and strong for him!

running4life · Mar 30, 2008

I do not want to say "I am sorry" or those things that I always hate when people tell me. I want to offer you hope.

I just turned 21 years old and I am training for a marathon. I am in the best shape of my life and am pretty much healthier than most people without CF. By the grace of God I am who I am today with Cystic Fibrosis and Type One Diabetes. I am not saying this to boast because I know how other people with CF are in their own walk of health.

This is not a death sentence for your son. He will become a strong little guy through this and you will see his strength and endurance in times of need. You will have so much inspiration from him, I am sure of it.

Stay strong for him, he will need you. Also, TOBI and Pulmozyme can be extremely expensive as well as his enzymes. There are programs to assist you in paying for his medicines, even if you make a decent amount of money. It is still a strain, so ask a social worker at your hospital if you would like to apply.

Your son will learn to enjoy life more and more each day he is given and he can live a complete and full life. Some advice, don't "feel sorry" for him because that always made me feel like a sick child when in reality I was just not feeling good that day. Stay positive and strong for him!

running4life · Mar 30, 2008

I do not want to say "I am sorry" or those things that I always hate when people tell me. I want to offer you hope.

I just turned 21 years old and I am training for a marathon. I am in the best shape of my life and am pretty much healthier than most people without CF. By the grace of God I am who I am today with Cystic Fibrosis and Type One Diabetes. I am not saying this to boast because I know how other people with CF are in their own walk of health.

This is not a death sentence for your son. He will become a strong little guy through this and you will see his strength and endurance in times of need. You will have so much inspiration from him, I am sure of it.

Stay strong for him, he will need you. Also, TOBI and Pulmozyme can be extremely expensive as well as his enzymes. There are programs to assist you in paying for his medicines, even if you make a decent amount of money. It is still a strain, so ask a social worker at your hospital if you would like to apply.

Your son will learn to enjoy life more and more each day he is given and he can live a complete and full life. Some advice, don't "feel sorry" for him because that always made me feel like a sick child when in reality I was just not feeling good that day. Stay positive and strong for him!

running4life · Mar 30, 2008

I do not want to say "I am sorry" or those things that I always hate when people tell me. I want to offer you hope.

I just turned 21 years old and I am training for a marathon. I am in the best shape of my life and am pretty much healthier than most people without CF. By the grace of God I am who I am today with Cystic Fibrosis and Type One Diabetes. I am not saying this to boast because I know how other people with CF are in their own walk of health.

This is not a death sentence for your son. He will become a strong little guy through this and you will see his strength and endurance in times of need. You will have so much inspiration from him, I am sure of it.

Stay strong for him, he will need you. Also, TOBI and Pulmozyme can be extremely expensive as well as his enzymes. There are programs to assist you in paying for his medicines, even if you make a decent amount of money. It is still a strain, so ask a social worker at your hospital if you would like to apply.

Your son will learn to enjoy life more and more each day he is given and he can live a complete and full life. Some advice, don't "feel sorry" for him because that always made me feel like a sick child when in reality I was just not feeling good that day. Stay positive and strong for him!

running4life · Mar 30, 2008

I do not want to say "I am sorry" or those things that I always hate when people tell me. I want to offer you hope.
 
 I just turned 21 years old and I am training for a marathon. I am in the best shape of my life and am pretty much healthier than most people without CF. By the grace of God I am who I am today with Cystic Fibrosis and Type One Diabetes. I am not saying this to boast because I know how other people with CF are in their own walk of health.
 
 This is not a death sentence for your son. He will become a strong little guy through this and you will see his strength and endurance in times of need. You will have so much inspiration from him, I am sure of it.
 
 Stay strong for him, he will need you. Also, TOBI and Pulmozyme can be extremely expensive as well as his enzymes. There are programs to assist you in paying for his medicines, even if you make a decent amount of money. It is still a strain, so ask a social worker at your hospital if you would like to apply.
 
 Your son will learn to enjoy life more and more each day he is given and he can live a complete and full life. Some advice, don't "feel sorry" for him because that always made me feel like a sick child when in reality I was just not feeling good that day. Stay positive and strong for him!

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