Hi there~
I'm April, and I'm writing in regards to my daughter Catie, who is 4 months
old. Catie was born at 37 weeks and was 8 lbs 8 ounces. From the start she had some breathing difficulties... her heart rate would drop with every contraction and she didn't "pink up" quite fast enough when she came out.
Soon after birth, she was diagnosed with reflux and put on zantac. She was
always very, very gassy. She would gag and choke a lot during feedings. She
also would have milk come out of her nose.
At about 7 weeks, she began to develop an enormous ammount of mucous in her
nose. This kid is a snot machine. It's 24/7 and never goes away. It's so bad
that she has to take breaths while nursing. She's had a few spells of
bronchiolitis since then. She's had steroid shots, antibiotics, breathing
treatments, we've seen a chiropractor, etc. She is in the 5th percentile for
weight gain, weighing just 11 pounds, 2 ounces. She's in the 10th percentile
for height. We've been in and out of the ped's office almost weekly, b/c I
refused to let them keep blowing me off and telling me that it's normal for
a baby to be "stuffy" and that she might just be "petite" (in regards to the
weight gain.)
Her stomach was always puffy and oddly shaped. People would always comment
and ask me if she was OK. The old ped said she was fine. But, when she was
recently hospitalized, nurses called it "distended."
She also has some pooping issues. She was pooping regularly in the early
weeks, and then went to about every 4 to 5 days and then to once every 7
days. At one point, she had gone 13 days. It was so weird, b/c I could
literally SMELL the poop in her. It was like it was just sitting there and
would not come out. She smelled for DAYS. When she would poop, it was not
firm or constipated. It was pretty wet and somewhat mucousy. Her ped said
she had a "narrow anus," and that was the problem.
I finally fired the old ped and recruited a new one. He immediately told me
to eliminate dairy from my diet and it helped some. I then began pursuing
allergy treatment and testing for her, convinced her problem was
allergy-related.
She was hospitalized for 4 days last week for RSV. The new ped called in a
pulmonologist to consult with him. He ordered chest X-rays and found a small
mucous plug in one of her lungs. I was told that could be from a bad RSV
infection or from CF. He also said her tummy was like a "balloon about to
pop" b/c it was so full of gas. He said that could be a CF enzyme problem or
could be from something as simple as lactose intolerance. He also ordered a
scan of her tummy and could see that she was about to poop. But it never
came. They had to give her an enema, and once again it was a firm or
constipated poop. It just wouldn't come out.
There is a history of CF in my family, though it is fairly far removed (3rd
& 4th cousins). My husband is not aware of a history in his family, though
we're told that means nothing.
After speaking with me and examining Catie and looking over her chest x-ray
and stomach scan and looking at her poop, the pulmonologist has given us
what he calls a "presumptive diagnosis of cystic fibrosis." He tells me he's
"pretty sure" that's what she has.
He's started treating her as though she has it. She now gets enzymes before
each meal, takes a breathing treatment of pulmozyme in the morning, another
treatment of albuterol and a hyperponic saline solution in the morning and
at night. She also is on mirelax to help her have a BM, and takes the
vitamins as well, and is also on a larger dose of zantac.
We are awaiting the results of a gene study to see if she is positive for
CF.It was sent out last Thursday and could take 1 to 2 weeks to get it back.
I'm just wondering about this "presumptive diagnosis" and how worried I
should be? I'm a little suspicious of anything "presumptive". The
pulmonologist tells me all of her symptoms could be the result of things
totally unrelated to CF. She's not salty tasting, either. Also, he did some
testing on her liver function and it was excellent. He also says her vitamin
levels were great.
We went back to the doc this morning and she weighed 10.12 and is almost 5 months, so she still is not gaining. Her lungs looked good, but she was still gassy so he upped her enzymes.
The results of a stool study were not consistent with CF, but the doctor told me that they're often inaccurate here, b/c they don't do them often enough here to truly know what they're looking for. I also asked about doing a swet test here and he says the same thing--they don't do them enough so they're not accurate here. He wants to send us to a CF clinic in Ft. Worth.
I'm just wondering if she doesn't have CF, and I really feel she does not, the WHAT does she have? Why is she not gaining weight?
I would appreciate ANY insight!
I'm April, and I'm writing in regards to my daughter Catie, who is 4 months
old. Catie was born at 37 weeks and was 8 lbs 8 ounces. From the start she had some breathing difficulties... her heart rate would drop with every contraction and she didn't "pink up" quite fast enough when she came out.
Soon after birth, she was diagnosed with reflux and put on zantac. She was
always very, very gassy. She would gag and choke a lot during feedings. She
also would have milk come out of her nose.
At about 7 weeks, she began to develop an enormous ammount of mucous in her
nose. This kid is a snot machine. It's 24/7 and never goes away. It's so bad
that she has to take breaths while nursing. She's had a few spells of
bronchiolitis since then. She's had steroid shots, antibiotics, breathing
treatments, we've seen a chiropractor, etc. She is in the 5th percentile for
weight gain, weighing just 11 pounds, 2 ounces. She's in the 10th percentile
for height. We've been in and out of the ped's office almost weekly, b/c I
refused to let them keep blowing me off and telling me that it's normal for
a baby to be "stuffy" and that she might just be "petite" (in regards to the
weight gain.)
Her stomach was always puffy and oddly shaped. People would always comment
and ask me if she was OK. The old ped said she was fine. But, when she was
recently hospitalized, nurses called it "distended."
She also has some pooping issues. She was pooping regularly in the early
weeks, and then went to about every 4 to 5 days and then to once every 7
days. At one point, she had gone 13 days. It was so weird, b/c I could
literally SMELL the poop in her. It was like it was just sitting there and
would not come out. She smelled for DAYS. When she would poop, it was not
firm or constipated. It was pretty wet and somewhat mucousy. Her ped said
she had a "narrow anus," and that was the problem.
I finally fired the old ped and recruited a new one. He immediately told me
to eliminate dairy from my diet and it helped some. I then began pursuing
allergy treatment and testing for her, convinced her problem was
allergy-related.
She was hospitalized for 4 days last week for RSV. The new ped called in a
pulmonologist to consult with him. He ordered chest X-rays and found a small
mucous plug in one of her lungs. I was told that could be from a bad RSV
infection or from CF. He also said her tummy was like a "balloon about to
pop" b/c it was so full of gas. He said that could be a CF enzyme problem or
could be from something as simple as lactose intolerance. He also ordered a
scan of her tummy and could see that she was about to poop. But it never
came. They had to give her an enema, and once again it was a firm or
constipated poop. It just wouldn't come out.
There is a history of CF in my family, though it is fairly far removed (3rd
& 4th cousins). My husband is not aware of a history in his family, though
we're told that means nothing.
After speaking with me and examining Catie and looking over her chest x-ray
and stomach scan and looking at her poop, the pulmonologist has given us
what he calls a "presumptive diagnosis of cystic fibrosis." He tells me he's
"pretty sure" that's what she has.
He's started treating her as though she has it. She now gets enzymes before
each meal, takes a breathing treatment of pulmozyme in the morning, another
treatment of albuterol and a hyperponic saline solution in the morning and
at night. She also is on mirelax to help her have a BM, and takes the
vitamins as well, and is also on a larger dose of zantac.
We are awaiting the results of a gene study to see if she is positive for
CF.It was sent out last Thursday and could take 1 to 2 weeks to get it back.
I'm just wondering about this "presumptive diagnosis" and how worried I
should be? I'm a little suspicious of anything "presumptive". The
pulmonologist tells me all of her symptoms could be the result of things
totally unrelated to CF. She's not salty tasting, either. Also, he did some
testing on her liver function and it was excellent. He also says her vitamin
levels were great.
We went back to the doc this morning and she weighed 10.12 and is almost 5 months, so she still is not gaining. Her lungs looked good, but she was still gassy so he upped her enzymes.
The results of a stool study were not consistent with CF, but the doctor told me that they're often inaccurate here, b/c they don't do them often enough here to truly know what they're looking for. I also asked about doing a swet test here and he says the same thing--they don't do them enough so they're not accurate here. He wants to send us to a CF clinic in Ft. Worth.
I'm just wondering if she doesn't have CF, and I really feel she does not, the WHAT does she have? Why is she not gaining weight?
I would appreciate ANY insight!