I feel like they have given my daughter a death sentence

[MelissaW]

I am new to this site and saw your post and had to reply. I have such vivid memories of finding out my daughter had CF. My daughter was diagnosted at 2 weeks old (she is now 18 months old). I went from a happy, first time mom to a very sad and very scared mom. I know it is hard to imagine right now but it does get easier. I remember what another CF mom told me a few months after my daughter was diagnosed. She said the first year is the hardest. And she was so right. You will have good days and bad days and eventually the good days will out weigh the bad ones. I felt so alone the first few months as I could talk to my friends but they just didn't get it and did not know what to say. Through my CF center I finally asked to be put in touch with another CF mom and it helped so much to talk to someone who understood. I wish I had done it sooner. So stick with this webstie to chat with others or ask at your clinic if you can talk with another parent. It really helps.

Hang in there and take it one day at a time.

 

[MelissaW]

I am new to this site and saw your post and had to reply. I have such vivid memories of finding out my daughter had CF. My daughter was diagnosted at 2 weeks old (she is now 18 months old). I went from a happy, first time mom to a very sad and very scared mom. I know it is hard to imagine right now but it does get easier. I remember what another CF mom told me a few months after my daughter was diagnosed. She said the first year is the hardest. And she was so right. You will have good days and bad days and eventually the good days will out weigh the bad ones. I felt so alone the first few months as I could talk to my friends but they just didn't get it and did not know what to say. Through my CF center I finally asked to be put in touch with another CF mom and it helped so much to talk to someone who understood. I wish I had done it sooner. So stick with this webstie to chat with others or ask at your clinic if you can talk with another parent. It really helps.

Hang in there and take it one day at a time.

 

[MelissaW]

I am new to this site and saw your post and had to reply. I have such vivid memories of finding out my daughter had CF. My daughter was diagnosted at 2 weeks old (she is now 18 months old). I went from a happy, first time mom to a very sad and very scared mom. I know it is hard to imagine right now but it does get easier. I remember what another CF mom told me a few months after my daughter was diagnosed. She said the first year is the hardest. And she was so right. You will have good days and bad days and eventually the good days will out weigh the bad ones. I felt so alone the first few months as I could talk to my friends but they just didn't get it and did not know what to say. Through my CF center I finally asked to be put in touch with another CF mom and it helped so much to talk to someone who understood. I wish I had done it sooner. So stick with this webstie to chat with others or ask at your clinic if you can talk with another parent. It really helps.

Hang in there and take it one day at a time.

 

[MelissaW]

I am new to this site and saw your post and had to reply. I have such vivid memories of finding out my daughter had CF. My daughter was diagnosted at 2 weeks old (she is now 18 months old). I went from a happy, first time mom to a very sad and very scared mom. I know it is hard to imagine right now but it does get easier. I remember what another CF mom told me a few months after my daughter was diagnosed. She said the first year is the hardest. And she was so right. You will have good days and bad days and eventually the good days will out weigh the bad ones. I felt so alone the first few months as I could talk to my friends but they just didn't get it and did not know what to say. Through my CF center I finally asked to be put in touch with another CF mom and it helped so much to talk to someone who understood. I wish I had done it sooner. So stick with this webstie to chat with others or ask at your clinic if you can talk with another parent. It really helps.

Hang in there and take it one day at a time.

 

[MelissaW]

I am new to this site and saw your post and had to reply. I have such vivid memories of finding out my daughter had CF. My daughter was diagnosted at 2 weeks old (she is now 18 months old). I went from a happy, first time mom to a very sad and very scared mom. I know it is hard to imagine right now but it does get easier. I remember what another CF mom told me a few months after my daughter was diagnosed. She said the first year is the hardest. And she was so right. You will have good days and bad days and eventually the good days will out weigh the bad ones. I felt so alone the first few months as I could talk to my friends but they just didn't get it and did not know what to say. Through my CF center I finally asked to be put in touch with another CF mom and it helped so much to talk to someone who understood. I wish I had done it sooner. So stick with this webstie to chat with others or ask at your clinic if you can talk with another parent. It really helps.

Hang in there and take it one day at a time.

 

[Emily65Roses]

I'm not relevant to any of the people you wanted to talk to... but I thought I'd throw me in for kicks...

Mutations are in 5 different classes. Class I being the worst, class V being the mildest. It's not quite that easy, it has to do with what the mutation does, but that's essentially the idea. The important thing to note here is that no one can predict each CFer's health and even mutations mean very little in the end. There's docs, clinics, meds, therapies, blah blah blah. All sorts of junk that contribute to how a CFer does. So never go by mutations alone...

Having said that, I have two pretty bad mutations (a class I, and a class II). When I was born, my parents were told I had a 50/50 chance of seeing 18. They didn't even find the CF gene until I was 5 years old. I am now 24. I still have 90% of my lung function (which means pretty much exactly what it looks like). I was in the 100% area my whole childhood. And while I've seen as low as 44% (due to an infection when I was 16), I've only lost about 10-15% permanently in 24 years. That's surprisingly little.

Mind you, I do put a lot of time and effort (and money) into keeping my health where it is. But I have been lucky in that all the stuff I do works very well and I'm still in good health, especially for someone my age. Furthermore, your child born now has a much better chance than people my age (or older). When I was born, I didn't have anything that I take now (except for the enzymes and the chest therapy --- now I take 3 nebs, vitamins, nose sprays, inhalers, all sorts of junk). I didn't get my first neb until I was 9 years old. That's 9 years of damage that I can't get back. Your child will have all the junk I have now... from the beginning. Giving her a hell of a lot better chance than I had. And I'm even doing well.

The life expectancy now is 36. Doesn't sound like much, but knowing that it was 18 only 20 years ago makes a difference. In 20 years, they gained 18 years on the average. Think of it like this... by the time your child gets to be 20, the expectancy could easily be as high as 54.

I don't want to play down the CF. It's a serious issue, and will require lots of care on your part, and her part once she gets old enough (I was 12 when I started doing all my junk myself). Even with the care, life won't be "normal". I only ran and passed the mile once (and that was when I was 13). I can't be around smoke (even in public or outside). Laughing makes me cough. Stairs are a pain in the butt. ....At the same time, I'm going to college full time, I'm engaged and have the greatest fiance ever <img src="i/expressions/face-icon-small-smile.gif" border="0">, I have hobbies, we have pets, we're going to get our own place the end of next year... So I do still live.

In short, it's a lot better these days than if you had had her 30 years ago. So basically... it's a pain in the ass, and it won't be "normal", but you can do it.

If you ever want to ask me anything specifically, you can send me a private message here (the little chat bubble button in any post that I've written) and I'll be happy to answer it the best I can. Either way, you've found lots of good resources here, so hang around.

 

[Emily65Roses]

I'm not relevant to any of the people you wanted to talk to... but I thought I'd throw me in for kicks...

Mutations are in 5 different classes. Class I being the worst, class V being the mildest. It's not quite that easy, it has to do with what the mutation does, but that's essentially the idea. The important thing to note here is that no one can predict each CFer's health and even mutations mean very little in the end. There's docs, clinics, meds, therapies, blah blah blah. All sorts of junk that contribute to how a CFer does. So never go by mutations alone...

Having said that, I have two pretty bad mutations (a class I, and a class II). When I was born, my parents were told I had a 50/50 chance of seeing 18. They didn't even find the CF gene until I was 5 years old. I am now 24. I still have 90% of my lung function (which means pretty much exactly what it looks like). I was in the 100% area my whole childhood. And while I've seen as low as 44% (due to an infection when I was 16), I've only lost about 10-15% permanently in 24 years. That's surprisingly little.

Mind you, I do put a lot of time and effort (and money) into keeping my health where it is. But I have been lucky in that all the stuff I do works very well and I'm still in good health, especially for someone my age. Furthermore, your child born now has a much better chance than people my age (or older). When I was born, I didn't have anything that I take now (except for the enzymes and the chest therapy --- now I take 3 nebs, vitamins, nose sprays, inhalers, all sorts of junk). I didn't get my first neb until I was 9 years old. That's 9 years of damage that I can't get back. Your child will have all the junk I have now... from the beginning. Giving her a hell of a lot better chance than I had. And I'm even doing well.

The life expectancy now is 36. Doesn't sound like much, but knowing that it was 18 only 20 years ago makes a difference. In 20 years, they gained 18 years on the average. Think of it like this... by the time your child gets to be 20, the expectancy could easily be as high as 54.

I don't want to play down the CF. It's a serious issue, and will require lots of care on your part, and her part once she gets old enough (I was 12 when I started doing all my junk myself). Even with the care, life won't be "normal". I only ran and passed the mile once (and that was when I was 13). I can't be around smoke (even in public or outside). Laughing makes me cough. Stairs are a pain in the butt. ....At the same time, I'm going to college full time, I'm engaged and have the greatest fiance ever <img src="i/expressions/face-icon-small-smile.gif" border="0">, I have hobbies, we have pets, we're going to get our own place the end of next year... So I do still live.

In short, it's a lot better these days than if you had had her 30 years ago. So basically... it's a pain in the ass, and it won't be "normal", but you can do it.

If you ever want to ask me anything specifically, you can send me a private message here (the little chat bubble button in any post that I've written) and I'll be happy to answer it the best I can. Either way, you've found lots of good resources here, so hang around.

 

[Emily65Roses]

I'm not relevant to any of the people you wanted to talk to... but I thought I'd throw me in for kicks...

Mutations are in 5 different classes. Class I being the worst, class V being the mildest. It's not quite that easy, it has to do with what the mutation does, but that's essentially the idea. The important thing to note here is that no one can predict each CFer's health and even mutations mean very little in the end. There's docs, clinics, meds, therapies, blah blah blah. All sorts of junk that contribute to how a CFer does. So never go by mutations alone...

Having said that, I have two pretty bad mutations (a class I, and a class II). When I was born, my parents were told I had a 50/50 chance of seeing 18. They didn't even find the CF gene until I was 5 years old. I am now 24. I still have 90% of my lung function (which means pretty much exactly what it looks like). I was in the 100% area my whole childhood. And while I've seen as low as 44% (due to an infection when I was 16), I've only lost about 10-15% permanently in 24 years. That's surprisingly little.

Mind you, I do put a lot of time and effort (and money) into keeping my health where it is. But I have been lucky in that all the stuff I do works very well and I'm still in good health, especially for someone my age. Furthermore, your child born now has a much better chance than people my age (or older). When I was born, I didn't have anything that I take now (except for the enzymes and the chest therapy --- now I take 3 nebs, vitamins, nose sprays, inhalers, all sorts of junk). I didn't get my first neb until I was 9 years old. That's 9 years of damage that I can't get back. Your child will have all the junk I have now... from the beginning. Giving her a hell of a lot better chance than I had. And I'm even doing well.

The life expectancy now is 36. Doesn't sound like much, but knowing that it was 18 only 20 years ago makes a difference. In 20 years, they gained 18 years on the average. Think of it like this... by the time your child gets to be 20, the expectancy could easily be as high as 54.

I don't want to play down the CF. It's a serious issue, and will require lots of care on your part, and her part once she gets old enough (I was 12 when I started doing all my junk myself). Even with the care, life won't be "normal". I only ran and passed the mile once (and that was when I was 13). I can't be around smoke (even in public or outside). Laughing makes me cough. Stairs are a pain in the butt. ....At the same time, I'm going to college full time, I'm engaged and have the greatest fiance ever <img src="i/expressions/face-icon-small-smile.gif" border="0">, I have hobbies, we have pets, we're going to get our own place the end of next year... So I do still live.

In short, it's a lot better these days than if you had had her 30 years ago. So basically... it's a pain in the ass, and it won't be "normal", but you can do it.

If you ever want to ask me anything specifically, you can send me a private message here (the little chat bubble button in any post that I've written) and I'll be happy to answer it the best I can. Either way, you've found lots of good resources here, so hang around.

 

[Emily65Roses]

I'm not relevant to any of the people you wanted to talk to... but I thought I'd throw me in for kicks...

Mutations are in 5 different classes. Class I being the worst, class V being the mildest. It's not quite that easy, it has to do with what the mutation does, but that's essentially the idea. The important thing to note here is that no one can predict each CFer's health and even mutations mean very little in the end. There's docs, clinics, meds, therapies, blah blah blah. All sorts of junk that contribute to how a CFer does. So never go by mutations alone...

Having said that, I have two pretty bad mutations (a class I, and a class II). When I was born, my parents were told I had a 50/50 chance of seeing 18. They didn't even find the CF gene until I was 5 years old. I am now 24. I still have 90% of my lung function (which means pretty much exactly what it looks like). I was in the 100% area my whole childhood. And while I've seen as low as 44% (due to an infection when I was 16), I've only lost about 10-15% permanently in 24 years. That's surprisingly little.

Mind you, I do put a lot of time and effort (and money) into keeping my health where it is. But I have been lucky in that all the stuff I do works very well and I'm still in good health, especially for someone my age. Furthermore, your child born now has a much better chance than people my age (or older). When I was born, I didn't have anything that I take now (except for the enzymes and the chest therapy --- now I take 3 nebs, vitamins, nose sprays, inhalers, all sorts of junk). I didn't get my first neb until I was 9 years old. That's 9 years of damage that I can't get back. Your child will have all the junk I have now... from the beginning. Giving her a hell of a lot better chance than I had. And I'm even doing well.

The life expectancy now is 36. Doesn't sound like much, but knowing that it was 18 only 20 years ago makes a difference. In 20 years, they gained 18 years on the average. Think of it like this... by the time your child gets to be 20, the expectancy could easily be as high as 54.

I don't want to play down the CF. It's a serious issue, and will require lots of care on your part, and her part once she gets old enough (I was 12 when I started doing all my junk myself). Even with the care, life won't be "normal". I only ran and passed the mile once (and that was when I was 13). I can't be around smoke (even in public or outside). Laughing makes me cough. Stairs are a pain in the butt. ....At the same time, I'm going to college full time, I'm engaged and have the greatest fiance ever <img src="i/expressions/face-icon-small-smile.gif" border="0">, I have hobbies, we have pets, we're going to get our own place the end of next year... So I do still live.

In short, it's a lot better these days than if you had had her 30 years ago. So basically... it's a pain in the ass, and it won't be "normal", but you can do it.

If you ever want to ask me anything specifically, you can send me a private message here (the little chat bubble button in any post that I've written) and I'll be happy to answer it the best I can. Either way, you've found lots of good resources here, so hang around.

 

[Emily65Roses]

I'm not relevant to any of the people you wanted to talk to... but I thought I'd throw me in for kicks...

Mutations are in 5 different classes. Class I being the worst, class V being the mildest. It's not quite that easy, it has to do with what the mutation does, but that's essentially the idea. The important thing to note here is that no one can predict each CFer's health and even mutations mean very little in the end. There's docs, clinics, meds, therapies, blah blah blah. All sorts of junk that contribute to how a CFer does. So never go by mutations alone...

Having said that, I have two pretty bad mutations (a class I, and a class II). When I was born, my parents were told I had a 50/50 chance of seeing 18. They didn't even find the CF gene until I was 5 years old. I am now 24. I still have 90% of my lung function (which means pretty much exactly what it looks like). I was in the 100% area my whole childhood. And while I've seen as low as 44% (due to an infection when I was 16), I've only lost about 10-15% permanently in 24 years. That's surprisingly little.

Mind you, I do put a lot of time and effort (and money) into keeping my health where it is. But I have been lucky in that all the stuff I do works very well and I'm still in good health, especially for someone my age. Furthermore, your child born now has a much better chance than people my age (or older). When I was born, I didn't have anything that I take now (except for the enzymes and the chest therapy --- now I take 3 nebs, vitamins, nose sprays, inhalers, all sorts of junk). I didn't get my first neb until I was 9 years old. That's 9 years of damage that I can't get back. Your child will have all the junk I have now... from the beginning. Giving her a hell of a lot better chance than I had. And I'm even doing well.

The life expectancy now is 36. Doesn't sound like much, but knowing that it was 18 only 20 years ago makes a difference. In 20 years, they gained 18 years on the average. Think of it like this... by the time your child gets to be 20, the expectancy could easily be as high as 54.

I don't want to play down the CF. It's a serious issue, and will require lots of care on your part, and her part once she gets old enough (I was 12 when I started doing all my junk myself). Even with the care, life won't be "normal". I only ran and passed the mile once (and that was when I was 13). I can't be around smoke (even in public or outside). Laughing makes me cough. Stairs are a pain in the butt. ....At the same time, I'm going to college full time, I'm engaged and have the greatest fiance ever <img src="i/expressions/face-icon-small-smile.gif" border="0">, I have hobbies, we have pets, we're going to get our own place the end of next year... So I do still live.

In short, it's a lot better these days than if you had had her 30 years ago. So basically... it's a pain in the ass, and it won't be "normal", but you can do it.

If you ever want to ask me anything specifically, you can send me a private message here (the little chat bubble button in any post that I've written) and I'll be happy to answer it the best I can. Either way, you've found lots of good resources here, so hang around.

 

[welshwitch]

Emily says: "So basically... it's a pain in the ass"

i like that, Emily. It is a pain in the ass, but a doable pain in the ass.

 

[welshwitch]

Emily says: "So basically... it's a pain in the ass"

i like that, Emily. It is a pain in the ass, but a doable pain in the ass.

 

[welshwitch]

Emily says: "So basically... it's a pain in the ass"

i like that, Emily. It is a pain in the ass, but a doable pain in the ass.

 

[welshwitch]

Emily says: "So basically... it's a pain in the ass"

i like that, Emily. It is a pain in the ass, but a doable pain in the ass.

 

[welshwitch]

Emily says: "So basically... it's a pain in the ass"

i like that, Emily. It is a pain in the ass, but a doable pain in the ass.

 

[ADAMSMAMA2006]

Hi Sarah,

I want to reach my arms out to you and give you a big hug and let you know that you guys aren't alone. My Husband & I too share the very same vivid memories that your family is experiencing now. Our son Adam was born in June 2006 and I was an elated first time Mom floating in the clouds with my newborn son. Adam was 5lb 14 oz at birth and at 6 weeks of age after breastfeeding, he was only 6 lbs 8 oz and had developed a bizarre rash on his bottom, knees, feet, elbows, hands & face. At first our PCP told us it was a form of a yeast infection and he prescribed an ointment. After 4 days of no response to the meds, we took him to an after hours appt with a pediatrician and he instantly got on the phone with a Deornbechers Childrens Hospital Pediatric Gastrointenologist. His suggestion was to test for a cows milk protien allergy. He instantly cut Adam off of breastmilk and put him on Enfamil Nutramigen Formula and the next day we went in for a blood test. At this point, 3 days later (I kid you not) the rash had completely cleared up and in a week and a half Adam gained 1.5 lbs. The blood test results came back suggestive of a cows milk allergy and at this point in time I thought they finally figured it out. Going forward, Adam had caught up in his weight and he was a very healthy baby and we had no other real big problems.

Then at his 4 month check up, out of the blue our pediatrician suggested that he wanted Adam to have a sweat chloride test to see if he had CF and the formula that he prescribed bypassed all other characteristics of the CF. Now at this point I was very confused and scared. We immediately followed through with the request and found out that the local test did reveal as positive so then we went to the Pulminologist in Portland and their test came back positive. So at this point, I had read too much stuff on the internet and formed the opinion that my son was being handed a death sentence. I was wrong! We are blessed that Adam was Dx at an early age and we could intervene and get him on Enzymes and watch his diet more closely. We also had a genetic test done and Adam has f-508 and another defect with a # ( NOT SURE) It was rough mostly for me in the first few months after he was Dx but I learned that Adam is a normal baby boy who just needs even more TLC and needs to have meds with his food. We have learned that persistance with diet and meds are key and now Adam is 18 mo old and a very healthy 27 lbs. We take our lives day by day and are cautious but no so cautious that we create a bubble around Adam. And his CF does not stop any of us from leading a mostly normal life with a few modifications.

So be assured you are not alone and the medications and treatments that are available are phenominal. Stay strong for your new baby girl and for yourselves and remember that there are a lot of people more than willing to talk to you and share their stories or otherwise be there for you. <img src="i/expressions/heart.gif" border="0">

 

[ADAMSMAMA2006]

Hi Sarah,

I want to reach my arms out to you and give you a big hug and let you know that you guys aren't alone. My Husband & I too share the very same vivid memories that your family is experiencing now. Our son Adam was born in June 2006 and I was an elated first time Mom floating in the clouds with my newborn son. Adam was 5lb 14 oz at birth and at 6 weeks of age after breastfeeding, he was only 6 lbs 8 oz and had developed a bizarre rash on his bottom, knees, feet, elbows, hands & face. At first our PCP told us it was a form of a yeast infection and he prescribed an ointment. After 4 days of no response to the meds, we took him to an after hours appt with a pediatrician and he instantly got on the phone with a Deornbechers Childrens Hospital Pediatric Gastrointenologist. His suggestion was to test for a cows milk protien allergy. He instantly cut Adam off of breastmilk and put him on Enfamil Nutramigen Formula and the next day we went in for a blood test. At this point, 3 days later (I kid you not) the rash had completely cleared up and in a week and a half Adam gained 1.5 lbs. The blood test results came back suggestive of a cows milk allergy and at this point in time I thought they finally figured it out. Going forward, Adam had caught up in his weight and he was a very healthy baby and we had no other real big problems.

Then at his 4 month check up, out of the blue our pediatrician suggested that he wanted Adam to have a sweat chloride test to see if he had CF and the formula that he prescribed bypassed all other characteristics of the CF. Now at this point I was very confused and scared. We immediately followed through with the request and found out that the local test did reveal as positive so then we went to the Pulminologist in Portland and their test came back positive. So at this point, I had read too much stuff on the internet and formed the opinion that my son was being handed a death sentence. I was wrong! We are blessed that Adam was Dx at an early age and we could intervene and get him on Enzymes and watch his diet more closely. We also had a genetic test done and Adam has f-508 and another defect with a # ( NOT SURE) It was rough mostly for me in the first few months after he was Dx but I learned that Adam is a normal baby boy who just needs even more TLC and needs to have meds with his food. We have learned that persistance with diet and meds are key and now Adam is 18 mo old and a very healthy 27 lbs. We take our lives day by day and are cautious but no so cautious that we create a bubble around Adam. And his CF does not stop any of us from leading a mostly normal life with a few modifications.

So be assured you are not alone and the medications and treatments that are available are phenominal. Stay strong for your new baby girl and for yourselves and remember that there are a lot of people more than willing to talk to you and share their stories or otherwise be there for you. <img src="i/expressions/heart.gif" border="0">

 

[ADAMSMAMA2006]

Hi Sarah,

I want to reach my arms out to you and give you a big hug and let you know that you guys aren't alone. My Husband & I too share the very same vivid memories that your family is experiencing now. Our son Adam was born in June 2006 and I was an elated first time Mom floating in the clouds with my newborn son. Adam was 5lb 14 oz at birth and at 6 weeks of age after breastfeeding, he was only 6 lbs 8 oz and had developed a bizarre rash on his bottom, knees, feet, elbows, hands & face. At first our PCP told us it was a form of a yeast infection and he prescribed an ointment. After 4 days of no response to the meds, we took him to an after hours appt with a pediatrician and he instantly got on the phone with a Deornbechers Childrens Hospital Pediatric Gastrointenologist. His suggestion was to test for a cows milk protien allergy. He instantly cut Adam off of breastmilk and put him on Enfamil Nutramigen Formula and the next day we went in for a blood test. At this point, 3 days later (I kid you not) the rash had completely cleared up and in a week and a half Adam gained 1.5 lbs. The blood test results came back suggestive of a cows milk allergy and at this point in time I thought they finally figured it out. Going forward, Adam had caught up in his weight and he was a very healthy baby and we had no other real big problems.

Then at his 4 month check up, out of the blue our pediatrician suggested that he wanted Adam to have a sweat chloride test to see if he had CF and the formula that he prescribed bypassed all other characteristics of the CF. Now at this point I was very confused and scared. We immediately followed through with the request and found out that the local test did reveal as positive so then we went to the Pulminologist in Portland and their test came back positive. So at this point, I had read too much stuff on the internet and formed the opinion that my son was being handed a death sentence. I was wrong! We are blessed that Adam was Dx at an early age and we could intervene and get him on Enzymes and watch his diet more closely. We also had a genetic test done and Adam has f-508 and another defect with a # ( NOT SURE) It was rough mostly for me in the first few months after he was Dx but I learned that Adam is a normal baby boy who just needs even more TLC and needs to have meds with his food. We have learned that persistance with diet and meds are key and now Adam is 18 mo old and a very healthy 27 lbs. We take our lives day by day and are cautious but no so cautious that we create a bubble around Adam. And his CF does not stop any of us from leading a mostly normal life with a few modifications.

So be assured you are not alone and the medications and treatments that are available are phenominal. Stay strong for your new baby girl and for yourselves and remember that there are a lot of people more than willing to talk to you and share their stories or otherwise be there for you. <img src="i/expressions/heart.gif" border="0">

 

[ADAMSMAMA2006]

Hi Sarah,

I want to reach my arms out to you and give you a big hug and let you know that you guys aren't alone. My Husband & I too share the very same vivid memories that your family is experiencing now. Our son Adam was born in June 2006 and I was an elated first time Mom floating in the clouds with my newborn son. Adam was 5lb 14 oz at birth and at 6 weeks of age after breastfeeding, he was only 6 lbs 8 oz and had developed a bizarre rash on his bottom, knees, feet, elbows, hands & face. At first our PCP told us it was a form of a yeast infection and he prescribed an ointment. After 4 days of no response to the meds, we took him to an after hours appt with a pediatrician and he instantly got on the phone with a Deornbechers Childrens Hospital Pediatric Gastrointenologist. His suggestion was to test for a cows milk protien allergy. He instantly cut Adam off of breastmilk and put him on Enfamil Nutramigen Formula and the next day we went in for a blood test. At this point, 3 days later (I kid you not) the rash had completely cleared up and in a week and a half Adam gained 1.5 lbs. The blood test results came back suggestive of a cows milk allergy and at this point in time I thought they finally figured it out. Going forward, Adam had caught up in his weight and he was a very healthy baby and we had no other real big problems.

Then at his 4 month check up, out of the blue our pediatrician suggested that he wanted Adam to have a sweat chloride test to see if he had CF and the formula that he prescribed bypassed all other characteristics of the CF. Now at this point I was very confused and scared. We immediately followed through with the request and found out that the local test did reveal as positive so then we went to the Pulminologist in Portland and their test came back positive. So at this point, I had read too much stuff on the internet and formed the opinion that my son was being handed a death sentence. I was wrong! We are blessed that Adam was Dx at an early age and we could intervene and get him on Enzymes and watch his diet more closely. We also had a genetic test done and Adam has f-508 and another defect with a # ( NOT SURE) It was rough mostly for me in the first few months after he was Dx but I learned that Adam is a normal baby boy who just needs even more TLC and needs to have meds with his food. We have learned that persistance with diet and meds are key and now Adam is 18 mo old and a very healthy 27 lbs. We take our lives day by day and are cautious but no so cautious that we create a bubble around Adam. And his CF does not stop any of us from leading a mostly normal life with a few modifications.

So be assured you are not alone and the medications and treatments that are available are phenominal. Stay strong for your new baby girl and for yourselves and remember that there are a lot of people more than willing to talk to you and share their stories or otherwise be there for you. <img src="i/expressions/heart.gif" border="0">

 

[ADAMSMAMA2006]

Hi Sarah,

I want to reach my arms out to you and give you a big hug and let you know that you guys aren't alone. My Husband & I too share the very same vivid memories that your family is experiencing now. Our son Adam was born in June 2006 and I was an elated first time Mom floating in the clouds with my newborn son. Adam was 5lb 14 oz at birth and at 6 weeks of age after breastfeeding, he was only 6 lbs 8 oz and had developed a bizarre rash on his bottom, knees, feet, elbows, hands & face. At first our PCP told us it was a form of a yeast infection and he prescribed an ointment. After 4 days of no response to the meds, we took him to an after hours appt with a pediatrician and he instantly got on the phone with a Deornbechers Childrens Hospital Pediatric Gastrointenologist. His suggestion was to test for a cows milk protien allergy. He instantly cut Adam off of breastmilk and put him on Enfamil Nutramigen Formula and the next day we went in for a blood test. At this point, 3 days later (I kid you not) the rash had completely cleared up and in a week and a half Adam gained 1.5 lbs. The blood test results came back suggestive of a cows milk allergy and at this point in time I thought they finally figured it out. Going forward, Adam had caught up in his weight and he was a very healthy baby and we had no other real big problems.

Then at his 4 month check up, out of the blue our pediatrician suggested that he wanted Adam to have a sweat chloride test to see if he had CF and the formula that he prescribed bypassed all other characteristics of the CF. Now at this point I was very confused and scared. We immediately followed through with the request and found out that the local test did reveal as positive so then we went to the Pulminologist in Portland and their test came back positive. So at this point, I had read too much stuff on the internet and formed the opinion that my son was being handed a death sentence. I was wrong! We are blessed that Adam was Dx at an early age and we could intervene and get him on Enzymes and watch his diet more closely. We also had a genetic test done and Adam has f-508 and another defect with a # ( NOT SURE) It was rough mostly for me in the first few months after he was Dx but I learned that Adam is a normal baby boy who just needs even more TLC and needs to have meds with his food. We have learned that persistance with diet and meds are key and now Adam is 18 mo old and a very healthy 27 lbs. We take our lives day by day and are cautious but no so cautious that we create a bubble around Adam. And his CF does not stop any of us from leading a mostly normal life with a few modifications.

So be assured you are not alone and the medications and treatments that are available are phenominal. Stay strong for your new baby girl and for yourselves and remember that there are a lot of people more than willing to talk to you and share their stories or otherwise be there for you. <img src="i/expressions/heart.gif" border="0">