newly diagnosed at 5months old.

[Ratatosk]

DS was diagnosed shortly after he was born because of a bowel obstruction. The first year is pretty much a blur -- dealing with meds, cpt, diagnosis, denial -- kept thinking it was all a big mistake. No family history. I've combed the internet trying to find out how long people with his same gene mutation live, what are their symptoms -- but there can be children in the same family who have very very different symptoms -- some are bowel related, sinuses, lung...

I can remember feeling absolutely crushed when I asked the doctor about the possiblity of it just being "mild" cf and was told CF was a progressive disease -- it progesses differently with each person. They're born with normal lungs, but with infections, thick mucus problems occur, so it's important to practice good lung care, be proactive with your child's health care....

DS is a busy toddler. He goes to preschool. Has been in daycare since he was 3 months old. Tonight he starts up swimming lessons again. Like Folione's little guy, I swear DS does much better healthwise than some of his classmates and cousins who don't have CF.

Oh, and our state JUST began screening last January for CF. The first month there were 3 children in our City who were diagnosed. Prior to that there wasn't newborn screening. And the state to our east began screening last April.

 

[ktsmom]

Hi Jennifer. I am sorry for your diagnosis but happy that now your daughter can get the treatment she needs, and that she is already feeling better! Our diagnosis is still very recent (almost 8 weeks now) but I have been amazed at how we have been able to adjust. At first I never ever EVER thought I could.

Clearly you have been researching, and you found this site. Both good things to do IMHO! I immersed myself in this site for days. I learned things that scared the living daylights out of me, so much so that sometimes I thought to keep reading would be the wrong thing to do. However, I feel it is up to us to be as informed as we can and it has really helped me make our doctor's appointments more productive.

In fact, she presented only with GI issues so our first doc visit was a shock but nothing like when the doc called a week later and said she had "cultured PA". My response was "Already?" because I knew from reading here exactly what that meant. Crushed (like Liza) but well-informed (also like Liza). That's me! And all of us!

Our state also only recently added newborn screening. We, too, were completely shocked and surprised when our daughter was diagnosed. I continue to feel anger and guilt - anger that the pediatrician didn't diagnose earlier; guilt that I didn't push harder.

My daughter goes to preschool and after-school care MWF, a home babysitter TTh. Me and my husband work full time. The school and the babysitter have been extremely supportive. I've arranged her treatment and med schedule so that the only thing they have to help her with is her enzymes. I provide them with a new 'kit' every day - applesauce, plastic spoons, little plastic cups, Creon. You won't be doing applesauce yet but just know that Wal-Mart has like 6 feet of shelving top to bottom dedicated to applesauce....LOL

Please hang in there and know that everything you are feeling is normal. It will get better for you some day, I promise.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[ktsmom]

Hi Jennifer. I am sorry for your diagnosis but happy that now your daughter can get the treatment she needs, and that she is already feeling better! Our diagnosis is still very recent (almost 8 weeks now) but I have been amazed at how we have been able to adjust. At first I never ever EVER thought I could.

Clearly you have been researching, and you found this site. Both good things to do IMHO! I immersed myself in this site for days. I learned things that scared the living daylights out of me, so much so that sometimes I thought to keep reading would be the wrong thing to do. However, I feel it is up to us to be as informed as we can and it has really helped me make our doctor's appointments more productive.

In fact, she presented only with GI issues so our first doc visit was a shock but nothing like when the doc called a week later and said she had "cultured PA". My response was "Already?" because I knew from reading here exactly what that meant. Crushed (like Liza) but well-informed (also like Liza). That's me! And all of us!

Our state also only recently added newborn screening. We, too, were completely shocked and surprised when our daughter was diagnosed. I continue to feel anger and guilt - anger that the pediatrician didn't diagnose earlier; guilt that I didn't push harder.

My daughter goes to preschool and after-school care MWF, a home babysitter TTh. Me and my husband work full time. The school and the babysitter have been extremely supportive. I've arranged her treatment and med schedule so that the only thing they have to help her with is her enzymes. I provide them with a new 'kit' every day - applesauce, plastic spoons, little plastic cups, Creon. You won't be doing applesauce yet but just know that Wal-Mart has like 6 feet of shelving top to bottom dedicated to applesauce....LOL

Please hang in there and know that everything you are feeling is normal. It will get better for you some day, I promise.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[ktsmom]

Hi Jennifer. I am sorry for your diagnosis but happy that now your daughter can get the treatment she needs, and that she is already feeling better! Our diagnosis is still very recent (almost 8 weeks now) but I have been amazed at how we have been able to adjust. At first I never ever EVER thought I could.

Clearly you have been researching, and you found this site. Both good things to do IMHO! I immersed myself in this site for days. I learned things that scared the living daylights out of me, so much so that sometimes I thought to keep reading would be the wrong thing to do. However, I feel it is up to us to be as informed as we can and it has really helped me make our doctor's appointments more productive.

In fact, she presented only with GI issues so our first doc visit was a shock but nothing like when the doc called a week later and said she had "cultured PA". My response was "Already?" because I knew from reading here exactly what that meant. Crushed (like Liza) but well-informed (also like Liza). That's me! And all of us!

Our state also only recently added newborn screening. We, too, were completely shocked and surprised when our daughter was diagnosed. I continue to feel anger and guilt - anger that the pediatrician didn't diagnose earlier; guilt that I didn't push harder.

My daughter goes to preschool and after-school care MWF, a home babysitter TTh. Me and my husband work full time. The school and the babysitter have been extremely supportive. I've arranged her treatment and med schedule so that the only thing they have to help her with is her enzymes. I provide them with a new 'kit' every day - applesauce, plastic spoons, little plastic cups, Creon. You won't be doing applesauce yet but just know that Wal-Mart has like 6 feet of shelving top to bottom dedicated to applesauce....LOL

Please hang in there and know that everything you are feeling is normal. It will get better for you some day, I promise.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[Faith4Liliana]

What is cultured PA? I I know they do a culture everytime we go and her so far are fine. We have to go every two weeks for now because her weight dropped so low and they want to make sure she keeps gaining. She is 10lbs and 21 1/2 inches, which they tell me is the size of a 2month old. She is not even on the charts for her age. And the doctor do have us tring infant applesauce. But its easier for me to just poor the beads into her mouth. Why did it take so long for her to be diagnosed? She must have been doing pretty good for the first two years. I have all of you in my prayers. Pleasee allow everyone to stay healthy..... Thank you all again for being so welcoming.
Jennifer mother to 5month old with cf.

 

[Faith4Liliana]

What is cultured PA? I I know they do a culture everytime we go and her so far are fine. We have to go every two weeks for now because her weight dropped so low and they want to make sure she keeps gaining. She is 10lbs and 21 1/2 inches, which they tell me is the size of a 2month old. She is not even on the charts for her age. And the doctor do have us tring infant applesauce. But its easier for me to just poor the beads into her mouth. Why did it take so long for her to be diagnosed? She must have been doing pretty good for the first two years. I have all of you in my prayers. Pleasee allow everyone to stay healthy..... Thank you all again for being so welcoming.
Jennifer mother to 5month old with cf.

 

[Faith4Liliana]

What is cultured PA? I I know they do a culture everytime we go and her so far are fine. We have to go every two weeks for now because her weight dropped so low and they want to make sure she keeps gaining. She is 10lbs and 21 1/2 inches, which they tell me is the size of a 2month old. She is not even on the charts for her age. And the doctor do have us tring infant applesauce. But its easier for me to just poor the beads into her mouth. Why did it take so long for her to be diagnosed? She must have been doing pretty good for the first two years. I have all of you in my prayers. Pleasee allow everyone to stay healthy..... Thank you all again for being so welcoming.
Jennifer mother to 5month old with cf.

 

[Faith4Liliana]

What is cultured PA? I I know they do a culture everytime we go and her so far are fine. We have to go every two weeks for now because her weight dropped so low and they want to make sure she keeps gaining. She is 10lbs and 21 1/2 inches, which they tell me is the size of a 2month old. She is not even on the charts for her age. And the doctor do have us tring infant applesauce. But its easier for me to just poor the beads into her mouth. Why did it take so long for her to be diagnosed? She must have been doing pretty good for the first two years. I have all of you in my prayers. Pleasee allow everyone to stay healthy..... Thank you all again for being so welcoming.
Jennifer mother to 5month old with cf.

 

[Faith4Liliana]

What is cultured PA? I I know they do a culture everytime we go and her so far are fine. We have to go every two weeks for now because her weight dropped so low and they want to make sure she keeps gaining. She is 10lbs and 21 1/2 inches, which they tell me is the size of a 2month old. She is not even on the charts for her age. And the doctor do have us tring infant applesauce. But its easier for me to just poor the beads into her mouth. Why did it take so long for her to be diagnosed? She must have been doing pretty good for the first two years. I have all of you in my prayers. Pleasee allow everyone to stay healthy..... Thank you all again for being so welcoming.
Jennifer mother to 5month old with cf.

 

[Faith4Liliana]

What is cultured PA? I I know they do a culture everytime we go and her so far are fine. We have to go every two weeks for now because her weight dropped so low and they want to make sure she keeps gaining. She is 10lbs and 21 1/2 inches, which they tell me is the size of a 2month old. She is not even on the charts for her age. And the doctor do have us tring infant applesauce. But its easier for me to just poor the beads into her mouth. Why did it take so long for her to be diagnosed? She must have been doing pretty good for the first two years. I have all of you in my prayers. Pleasee allow everyone to stay healthy..... Thank you all again for being so welcoming.
Jennifer mother to 5month old with cf.

 

[mneville]

Jennifer- Our son Aidan (just turned two) was one of the lucky ones to be diagnosed through NJ newborn screening. He was already showing GI symptoms by the day of diagnosis at 8 days old. It was devastating esp since we thought we had been screened for the gene. Our OB screwed up.

Two years later- it is SO much easier. Aidan has the two most severe mutations as some say but he is thriving. He is a crazy, active, BIG 2 year old. There is nothing different about him other than the extra meds and treatments. He is great about his treatments- it is the only thing he knows.

Have faith that it will get better. Love your baby and treat them the same as any other baby. We fully expect Aidan to grow up, have children and become a grandfather someday. Hang in there.

Megan

 

[mneville]

Jennifer- Our son Aidan (just turned two) was one of the lucky ones to be diagnosed through NJ newborn screening. He was already showing GI symptoms by the day of diagnosis at 8 days old. It was devastating esp since we thought we had been screened for the gene. Our OB screwed up.

Two years later- it is SO much easier. Aidan has the two most severe mutations as some say but he is thriving. He is a crazy, active, BIG 2 year old. There is nothing different about him other than the extra meds and treatments. He is great about his treatments- it is the only thing he knows.

Have faith that it will get better. Love your baby and treat them the same as any other baby. We fully expect Aidan to grow up, have children and become a grandfather someday. Hang in there.

Megan

 

[mneville]

Jennifer- Our son Aidan (just turned two) was one of the lucky ones to be diagnosed through NJ newborn screening. He was already showing GI symptoms by the day of diagnosis at 8 days old. It was devastating esp since we thought we had been screened for the gene. Our OB screwed up.

Two years later- it is SO much easier. Aidan has the two most severe mutations as some say but he is thriving. He is a crazy, active, BIG 2 year old. There is nothing different about him other than the extra meds and treatments. He is great about his treatments- it is the only thing he knows.

Have faith that it will get better. Love your baby and treat them the same as any other baby. We fully expect Aidan to grow up, have children and become a grandfather someday. Hang in there.

Megan

 

[ktsmom]

Pseudomonas aeruginosa (you can see why we abbreviate to PA) is a nasty and opporunistic bacteria that is very problematic for CF people. That is why they culture for it and other bugs - if she ever cultures it, they can start your daughter on inhalation treatements and antibiotics to try to delay their progress.

My daughter's diagnosis was delayed because she only had GI symptoms and our doc pretty much thought it was impossible for her to have CF. Turns out he didn't know much about CF except that it meant lung problems.

Wow, I hope you get your daughter's weight issue under control. Now that she is taking enzymes it should be helping. We noticed an improvement right away. My daughter also takes Prevacid once a day - this is supposed to help the enzymes do their job by reducing stomach acid. Maybe they should work on your daughter's Creon dosage?

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[ktsmom]

Pseudomonas aeruginosa (you can see why we abbreviate to PA) is a nasty and opporunistic bacteria that is very problematic for CF people. That is why they culture for it and other bugs - if she ever cultures it, they can start your daughter on inhalation treatements and antibiotics to try to delay their progress.

My daughter's diagnosis was delayed because she only had GI symptoms and our doc pretty much thought it was impossible for her to have CF. Turns out he didn't know much about CF except that it meant lung problems.

Wow, I hope you get your daughter's weight issue under control. Now that she is taking enzymes it should be helping. We noticed an improvement right away. My daughter also takes Prevacid once a day - this is supposed to help the enzymes do their job by reducing stomach acid. Maybe they should work on your daughter's Creon dosage?

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[ktsmom]

Pseudomonas aeruginosa (you can see why we abbreviate to PA) is a nasty and opporunistic bacteria that is very problematic for CF people. That is why they culture for it and other bugs - if she ever cultures it, they can start your daughter on inhalation treatements and antibiotics to try to delay their progress.

My daughter's diagnosis was delayed because she only had GI symptoms and our doc pretty much thought it was impossible for her to have CF. Turns out he didn't know much about CF except that it meant lung problems.

Wow, I hope you get your daughter's weight issue under control. Now that she is taking enzymes it should be helping. We noticed an improvement right away. My daughter also takes Prevacid once a day - this is supposed to help the enzymes do their job by reducing stomach acid. Maybe they should work on your daughter's Creon dosage?

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[angelas]

We also had no family history when my daughter was diagnosed 23
years ago. My son 16 does not have CF. But my daughter had a
wonderful life and did everything that any other child would have
done. Pretty soon the meds just seem like a normal part of life.
Just enjoy your child everyday and things will work out.<br>
<br>
Angelas

 

[angelas]

We also had no family history when my daughter was diagnosed 23
years ago. My son 16 does not have CF. But my daughter had a
wonderful life and did everything that any other child would have
done. Pretty soon the meds just seem like a normal part of life.
Just enjoy your child everyday and things will work out.<br>
<br>
Angelas

 

[angelas]

We also had no family history when my daughter was diagnosed 23
years ago. My son 16 does not have CF. But my daughter had a
wonderful life and did everything that any other child would have
done. Pretty soon the meds just seem like a normal part of life.
Just enjoy your child everyday and things will work out.<br>
<br>
Angelas

 

[Ratatosk]

We found that baby food bananas worked much better than applesauce. DS early on had texture isssues -- didn't like the feel on his tongue or something. So the CF nurses told us to try bananas.