2.5 year old with GI symtpoms only

dlo2977 · Jul 3, 2009

Hey everyone. I just joined yesterday as my 2.5 year old daughter, Ava, just tested positive on a sweat test yesterday. I am shocked and can't stop crying <img src="i/expressions/face-icon-small-sad.gif" border="0"> Our ped and the gastroenterologist wanted her tested as a rule out and both said that they expected her to be negative. I noticed several months ago that when she ate a more fattening meal than normal, her poop would be yellow and have grease droplets in it. No diarrhea or even loose poop really. She has always been small but has never been failure to thrive and has always steadily gained weight. She has never had a respiratory symptom.

I just wanted to introduce myself and see if anyone has had similar symptoms in their kids. We have an appointment at the Riley Children's Hospital CF center on Monday. I am hoping that it is a good sign prognosis wise that she has only had such mild symptoms so far. Does anyone have a kid who has never gotten respiratory symptoms??? Is it inevitable that she will???

dlo2977 · Jul 3, 2009

Hey everyone. I just joined yesterday as my 2.5 year old daughter, Ava, just tested positive on a sweat test yesterday. I am shocked and can't stop crying <img src="i/expressions/face-icon-small-sad.gif" border="0"> Our ped and the gastroenterologist wanted her tested as a rule out and both said that they expected her to be negative. I noticed several months ago that when she ate a more fattening meal than normal, her poop would be yellow and have grease droplets in it. No diarrhea or even loose poop really. She has always been small but has never been failure to thrive and has always steadily gained weight. She has never had a respiratory symptom.

I just wanted to introduce myself and see if anyone has had similar symptoms in their kids. We have an appointment at the Riley Children's Hospital CF center on Monday. I am hoping that it is a good sign prognosis wise that she has only had such mild symptoms so far. Does anyone have a kid who has never gotten respiratory symptoms??? Is it inevitable that she will???

dlo2977 · Jul 3, 2009

Hey everyone. I just joined yesterday as my 2.5 year old daughter, Ava, just tested positive on a sweat test yesterday. I am shocked and can't stop crying <img src="i/expressions/face-icon-small-sad.gif" border="0"> Our ped and the gastroenterologist wanted her tested as a rule out and both said that they expected her to be negative. I noticed several months ago that when she ate a more fattening meal than normal, her poop would be yellow and have grease droplets in it. No diarrhea or even loose poop really. She has always been small but has never been failure to thrive and has always steadily gained weight. She has never had a respiratory symptom.

I just wanted to introduce myself and see if anyone has had similar symptoms in their kids. We have an appointment at the Riley Children's Hospital CF center on Monday. I am hoping that it is a good sign prognosis wise that she has only had such mild symptoms so far. Does anyone have a kid who has never gotten respiratory symptoms??? Is it inevitable that she will???

dlo2977 · Jul 3, 2009

Hey everyone. I just joined yesterday as my 2.5 year old daughter, Ava, just tested positive on a sweat test yesterday. I am shocked and can't stop crying <img src="i/expressions/face-icon-small-sad.gif" border="0"> Our ped and the gastroenterologist wanted her tested as a rule out and both said that they expected her to be negative. I noticed several months ago that when she ate a more fattening meal than normal, her poop would be yellow and have grease droplets in it. No diarrhea or even loose poop really. She has always been small but has never been failure to thrive and has always steadily gained weight. She has never had a respiratory symptom.

I just wanted to introduce myself and see if anyone has had similar symptoms in their kids. We have an appointment at the Riley Children's Hospital CF center on Monday. I am hoping that it is a good sign prognosis wise that she has only had such mild symptoms so far. Does anyone have a kid who has never gotten respiratory symptoms??? Is it inevitable that she will???

dlo2977 · Jul 3, 2009

Hey everyone. I just joined yesterday as my 2.5 year old daughter, Ava, just tested positive on a sweat test yesterday. I am shocked and can't stop crying <img src="i/expressions/face-icon-small-sad.gif" border="0"> Our ped and the gastroenterologist wanted her tested as a rule out and both said that they expected her to be negative. I noticed several months ago that when she ate a more fattening meal than normal, her poop would be yellow and have grease droplets in it. No diarrhea or even loose poop really. She has always been small but has never been failure to thrive and has always steadily gained weight. She has never had a respiratory symptom.
 
 I just wanted to introduce myself and see if anyone has had similar symptoms in their kids. We have an appointment at the Riley Children's Hospital CF center on Monday. I am hoping that it is a good sign prognosis wise that she has only had such mild symptoms so far. Does anyone have a kid who has never gotten respiratory symptoms??? Is it inevitable that she will???

ktsmom · Jul 3, 2009

I'm so sorry; this is a tough time and believe me we all know just how you feel.

Our daughter was diagnosed at age 3 - same thing, tested based on GI symptoms only to "rule out CF" and the ped didn't actually believe it when the sweat test came back positive. She still does not have visible or overt respiratory symptoms but believe me the GI symptoms are enough to keep us on our toes.

Unfortunately lung damage is happening even though it may not seem obvious. So we do the full/typical regimen of breathing treatments and also CPT using the vest for our daughter. Early and consistent treatment is one thing you can do to keep your daughter's lungs as healthy as possible.

Always keep your hope and faith, but don't get too caught up in focusing on whether your child's CF is "mild" or not. Take notes at Monday's appointment, and ask questions until you understand what they are saying. Bring another adult with you if you can.

Good luck. You will find lots of information and support here.

ktsmom · Jul 3, 2009

I'm so sorry; this is a tough time and believe me we all know just how you feel.

Our daughter was diagnosed at age 3 - same thing, tested based on GI symptoms only to "rule out CF" and the ped didn't actually believe it when the sweat test came back positive. She still does not have visible or overt respiratory symptoms but believe me the GI symptoms are enough to keep us on our toes.

Unfortunately lung damage is happening even though it may not seem obvious. So we do the full/typical regimen of breathing treatments and also CPT using the vest for our daughter. Early and consistent treatment is one thing you can do to keep your daughter's lungs as healthy as possible.

Always keep your hope and faith, but don't get too caught up in focusing on whether your child's CF is "mild" or not. Take notes at Monday's appointment, and ask questions until you understand what they are saying. Bring another adult with you if you can.

Good luck. You will find lots of information and support here.

ktsmom · Jul 3, 2009

I'm so sorry; this is a tough time and believe me we all know just how you feel.

Our daughter was diagnosed at age 3 - same thing, tested based on GI symptoms only to "rule out CF" and the ped didn't actually believe it when the sweat test came back positive. She still does not have visible or overt respiratory symptoms but believe me the GI symptoms are enough to keep us on our toes.

Unfortunately lung damage is happening even though it may not seem obvious. So we do the full/typical regimen of breathing treatments and also CPT using the vest for our daughter. Early and consistent treatment is one thing you can do to keep your daughter's lungs as healthy as possible.

Always keep your hope and faith, but don't get too caught up in focusing on whether your child's CF is "mild" or not. Take notes at Monday's appointment, and ask questions until you understand what they are saying. Bring another adult with you if you can.

Good luck. You will find lots of information and support here.

ktsmom · Jul 3, 2009

I'm so sorry; this is a tough time and believe me we all know just how you feel.

Our daughter was diagnosed at age 3 - same thing, tested based on GI symptoms only to "rule out CF" and the ped didn't actually believe it when the sweat test came back positive. She still does not have visible or overt respiratory symptoms but believe me the GI symptoms are enough to keep us on our toes.

Unfortunately lung damage is happening even though it may not seem obvious. So we do the full/typical regimen of breathing treatments and also CPT using the vest for our daughter. Early and consistent treatment is one thing you can do to keep your daughter's lungs as healthy as possible.

Always keep your hope and faith, but don't get too caught up in focusing on whether your child's CF is "mild" or not. Take notes at Monday's appointment, and ask questions until you understand what they are saying. Bring another adult with you if you can.

Good luck. You will find lots of information and support here.

ktsmom · Jul 3, 2009

I'm so sorry; this is a tough time and believe me we all know just how you feel.
 
 Our daughter was diagnosed at age 3 - same thing, tested based on GI symptoms only to "rule out CF" and the ped didn't actually believe it when the sweat test came back positive. She still does not have visible or overt respiratory symptoms but believe me the GI symptoms are enough to keep us on our toes.
 
 Unfortunately lung damage is happening even though it may not seem obvious. So we do the full/typical regimen of breathing treatments and also CPT using the vest for our daughter. Early and consistent treatment is one thing you can do to keep your daughter's lungs as healthy as possible.
 
 Always keep your hope and faith, but don't get too caught up in focusing on whether your child's CF is "mild" or not. Take notes at Monday's appointment, and ask questions until you understand what they are saying. Bring another adult with you if you can.
 
 Good luck. You will find lots of information and support here.

julieann1966 · Jul 3, 2009

Hi, I also have a daughter who just turned 2 in May, she was diagnosed at 16 months after I fought the doctors because I felt something wasn't right. My daughter too has never had a respiratory infection and only started showing oily diapers around 12 months. She is approximately 33 inches tall and weighs 28 lbs. I completely agree with the other posting, early treatment is the best medicine. We are in Canada and had to pay for our daughters Vest but it has also been wonderful as we couldn't get her to sit still for any type of physio, it was awful.

I know how you feel, I too felt like I couldn't stop crying, I went through the guilt, bargaining, the whole "nine yards". I still have days where I fall apart, realising you are not alone and there is hope will help you get through this. Believe me, when you go the first few times to the appointments, it will feel like you are drowning and cannot breathe, it does get easier and you will find what works best for you and your daughter.

Our daughter is doing really well, she is on enzymes and vitamins and we do the inCourage Respirtech Vest twice a day for 30 minutes each session. We are now down to visiting the CF clinic every three months, a far cry from last September when we were there every week.

Its okay to cry, infact it shows you are coping and not burying how you feel, I used to judge how I was dealing with it by how many days I went without falling apart ! I still find it hard to talk to anyone close to me about it, I get upset but I can talk to people I don't know and explain what it is and the effets.

Chat me back if you want to talk, our daughters are close in age and we have too only just begun this journey, there are wonderful people and lots of knowledge on this website.

Thinking of you and Ava.

Julieann

julieann1966 · Jul 3, 2009

Hi, I also have a daughter who just turned 2 in May, she was diagnosed at 16 months after I fought the doctors because I felt something wasn't right. My daughter too has never had a respiratory infection and only started showing oily diapers around 12 months. She is approximately 33 inches tall and weighs 28 lbs. I completely agree with the other posting, early treatment is the best medicine. We are in Canada and had to pay for our daughters Vest but it has also been wonderful as we couldn't get her to sit still for any type of physio, it was awful.

I know how you feel, I too felt like I couldn't stop crying, I went through the guilt, bargaining, the whole "nine yards". I still have days where I fall apart, realising you are not alone and there is hope will help you get through this. Believe me, when you go the first few times to the appointments, it will feel like you are drowning and cannot breathe, it does get easier and you will find what works best for you and your daughter.

Our daughter is doing really well, she is on enzymes and vitamins and we do the inCourage Respirtech Vest twice a day for 30 minutes each session. We are now down to visiting the CF clinic every three months, a far cry from last September when we were there every week.

Its okay to cry, infact it shows you are coping and not burying how you feel, I used to judge how I was dealing with it by how many days I went without falling apart ! I still find it hard to talk to anyone close to me about it, I get upset but I can talk to people I don't know and explain what it is and the effets.

Chat me back if you want to talk, our daughters are close in age and we have too only just begun this journey, there are wonderful people and lots of knowledge on this website.

Thinking of you and Ava.

Julieann

julieann1966 · Jul 3, 2009

Hi, I also have a daughter who just turned 2 in May, she was diagnosed at 16 months after I fought the doctors because I felt something wasn't right. My daughter too has never had a respiratory infection and only started showing oily diapers around 12 months. She is approximately 33 inches tall and weighs 28 lbs. I completely agree with the other posting, early treatment is the best medicine. We are in Canada and had to pay for our daughters Vest but it has also been wonderful as we couldn't get her to sit still for any type of physio, it was awful.

I know how you feel, I too felt like I couldn't stop crying, I went through the guilt, bargaining, the whole "nine yards". I still have days where I fall apart, realising you are not alone and there is hope will help you get through this. Believe me, when you go the first few times to the appointments, it will feel like you are drowning and cannot breathe, it does get easier and you will find what works best for you and your daughter.

Our daughter is doing really well, she is on enzymes and vitamins and we do the inCourage Respirtech Vest twice a day for 30 minutes each session. We are now down to visiting the CF clinic every three months, a far cry from last September when we were there every week.

Its okay to cry, infact it shows you are coping and not burying how you feel, I used to judge how I was dealing with it by how many days I went without falling apart ! I still find it hard to talk to anyone close to me about it, I get upset but I can talk to people I don't know and explain what it is and the effets.

Chat me back if you want to talk, our daughters are close in age and we have too only just begun this journey, there are wonderful people and lots of knowledge on this website.

Thinking of you and Ava.

Julieann

julieann1966 · Jul 3, 2009

Hi, I also have a daughter who just turned 2 in May, she was diagnosed at 16 months after I fought the doctors because I felt something wasn't right. My daughter too has never had a respiratory infection and only started showing oily diapers around 12 months. She is approximately 33 inches tall and weighs 28 lbs. I completely agree with the other posting, early treatment is the best medicine. We are in Canada and had to pay for our daughters Vest but it has also been wonderful as we couldn't get her to sit still for any type of physio, it was awful.

I know how you feel, I too felt like I couldn't stop crying, I went through the guilt, bargaining, the whole "nine yards". I still have days where I fall apart, realising you are not alone and there is hope will help you get through this. Believe me, when you go the first few times to the appointments, it will feel like you are drowning and cannot breathe, it does get easier and you will find what works best for you and your daughter.

Our daughter is doing really well, she is on enzymes and vitamins and we do the inCourage Respirtech Vest twice a day for 30 minutes each session. We are now down to visiting the CF clinic every three months, a far cry from last September when we were there every week.

Its okay to cry, infact it shows you are coping and not burying how you feel, I used to judge how I was dealing with it by how many days I went without falling apart ! I still find it hard to talk to anyone close to me about it, I get upset but I can talk to people I don't know and explain what it is and the effets.

Chat me back if you want to talk, our daughters are close in age and we have too only just begun this journey, there are wonderful people and lots of knowledge on this website.

Thinking of you and Ava.

Julieann

julieann1966 · Jul 3, 2009

Hi, I also have a daughter who just turned 2 in May, she was diagnosed at 16 months after I fought the doctors because I felt something wasn't right. My daughter too has never had a respiratory infection and only started showing oily diapers around 12 months. She is approximately 33 inches tall and weighs 28 lbs. I completely agree with the other posting, early treatment is the best medicine. We are in Canada and had to pay for our daughters Vest but it has also been wonderful as we couldn't get her to sit still for any type of physio, it was awful.
 
 I know how you feel, I too felt like I couldn't stop crying, I went through the guilt, bargaining, the whole "nine yards". I still have days where I fall apart, realising you are not alone and there is hope will help you get through this. Believe me, when you go the first few times to the appointments, it will feel like you are drowning and cannot breathe, it does get easier and you will find what works best for you and your daughter.
 
 Our daughter is doing really well, she is on enzymes and vitamins and we do the inCourage Respirtech Vest twice a day for 30 minutes each session. We are now down to visiting the CF clinic every three months, a far cry from last September when we were there every week.
 
 Its okay to cry, infact it shows you are coping and not burying how you feel, I used to judge how I was dealing with it by how many days I went without falling apart ! I still find it hard to talk to anyone close to me about it, I get upset but I can talk to people I don't know and explain what it is and the effets.
 
 Chat me back if you want to talk, our daughters are close in age and we have too only just begun this journey, there are wonderful people and lots of knowledge on this website.
 
 Thinking of you and Ava.
 
 Julieann

marisalynn · Jul 3, 2009

I am very sorry to hear about your news. My parents learned when I was about your daughter's age that my older brother and I had CF. I can't imagine what you are going through. But as the others said, the best thing that you can do for your daughter is to stick to the regimen that they give you. It will be a little more difficult with the respiratory aspects of it, because she is not exhibiting symptoms yet, but it is very important for her future. Other than that, try to treat her like a normal kid. Be open with her when she asks questions about CF. As easy as it could be, don't lie to her because eventually she will find out. And just think, when I was diagnosed, the average life expectancy was early 20's. Now it is 40's and keeps rising. I was able to go to school, date, go to college, and now I am working as a nurse and approaching my 1st year wedding anniversary. There are so many possibilities for the future of CF. Good luck to you.

Marisa RN, 21 w/CF

marisalynn · Jul 3, 2009

I am very sorry to hear about your news. My parents learned when I was about your daughter's age that my older brother and I had CF. I can't imagine what you are going through. But as the others said, the best thing that you can do for your daughter is to stick to the regimen that they give you. It will be a little more difficult with the respiratory aspects of it, because she is not exhibiting symptoms yet, but it is very important for her future. Other than that, try to treat her like a normal kid. Be open with her when she asks questions about CF. As easy as it could be, don't lie to her because eventually she will find out. And just think, when I was diagnosed, the average life expectancy was early 20's. Now it is 40's and keeps rising. I was able to go to school, date, go to college, and now I am working as a nurse and approaching my 1st year wedding anniversary. There are so many possibilities for the future of CF. Good luck to you.

Marisa RN, 21 w/CF

marisalynn · Jul 3, 2009

I am very sorry to hear about your news. My parents learned when I was about your daughter's age that my older brother and I had CF. I can't imagine what you are going through. But as the others said, the best thing that you can do for your daughter is to stick to the regimen that they give you. It will be a little more difficult with the respiratory aspects of it, because she is not exhibiting symptoms yet, but it is very important for her future. Other than that, try to treat her like a normal kid. Be open with her when she asks questions about CF. As easy as it could be, don't lie to her because eventually she will find out. And just think, when I was diagnosed, the average life expectancy was early 20's. Now it is 40's and keeps rising. I was able to go to school, date, go to college, and now I am working as a nurse and approaching my 1st year wedding anniversary. There are so many possibilities for the future of CF. Good luck to you.

Marisa RN, 21 w/CF

marisalynn · Jul 3, 2009

I am very sorry to hear about your news. My parents learned when I was about your daughter's age that my older brother and I had CF. I can't imagine what you are going through. But as the others said, the best thing that you can do for your daughter is to stick to the regimen that they give you. It will be a little more difficult with the respiratory aspects of it, because she is not exhibiting symptoms yet, but it is very important for her future. Other than that, try to treat her like a normal kid. Be open with her when she asks questions about CF. As easy as it could be, don't lie to her because eventually she will find out. And just think, when I was diagnosed, the average life expectancy was early 20's. Now it is 40's and keeps rising. I was able to go to school, date, go to college, and now I am working as a nurse and approaching my 1st year wedding anniversary. There are so many possibilities for the future of CF. Good luck to you.

Marisa RN, 21 w/CF

marisalynn · Jul 3, 2009

I am very sorry to hear about your news. My parents learned when I was about your daughter's age that my older brother and I had CF. I can't imagine what you are going through. But as the others said, the best thing that you can do for your daughter is to stick to the regimen that they give you. It will be a little more difficult with the respiratory aspects of it, because she is not exhibiting symptoms yet, but it is very important for her future. Other than that, try to treat her like a normal kid. Be open with her when she asks questions about CF. As easy as it could be, don't lie to her because eventually she will find out. And just think, when I was diagnosed, the average life expectancy was early 20's. Now it is 40's and keeps rising. I was able to go to school, date, go to college, and now I am working as a nurse and approaching my 1st year wedding anniversary. There are so many possibilities for the future of CF. Good luck to you.
 
 Marisa RN, 21 w/CF

2.5 year old with GI symtpoms only

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