Re: Baby's first illness - what now?

[Guest guest]

,

OMG what a scary story! I so glad to hear you little Evan is doing better.

I guess it just reinforces what we hear about mother's intuition being right. I

still feel so new to the diagnosis of CF that I have no idea what I should or

shouldn't be concerned about. I don't even know if a FEV1 of 105 is good or

bad. I'm sure I'll be learning about that in the future. How do you take care

of all your other kids and do CPT more then 3 times per day?!? You are

supermom!!

I will let everyone know how Leila is doing. So far we have determined that

she is not excited about the taste of Septra. It's so nice to talk with people

who understand what your going through. I have friends who try very hard to be

supportive, but they really have no idea.

Keeley

Re: Baby's first illness - what now?

Keeley,

I have 2 children w/cf, one is 14 and the other is 11 wks. My son Evan is

the baby and he recently had a lung infection, he just got out of the

hospital after being there for 16 days . I was on the phone and at the cf

center 2x a week they never heard his cough so they assumed it was from

reflux because each time they listened to his lungs they said he sounded

clear, I didn't like his cough or stuffy nose but they kept assuring me that

he was fine. In the mean time my 14 year old got sick (most likely caught

it from Evan) she was admitted to the hospital and while she was there I had

Evan w/me(we were in a private room and he wore a mask, he slept most of

time) anyway Evan started coughing and the nurse looked alarmed at his

cough...I told her it was from reflux and she said " no, I don't think so

...let me go get the dr. " .

Guess what? they admitted him with a lung infection and a small part of his

lung collapsed. He's ok now, just got off of augmentin but he was on 2 i.v.

meds while in the hospital.

I just wanted to tell you to make sure you are persistant with your doctors,

just to be sure get an xray.

I was really upset with the drs. but they have been so great with my

daughter, her FEV1 is 105!!!! she wasn't diagnosed until she was 5 so I'm

nervous...even if he sneezes I'm pacing the floor. They assured me from now

on they will treat Evan differently. I'm sure that means a lot of xrays,

which also makes me nervous!

He is doing great now, I also asked the question about his cpt, I do it 3

times a day, sometimes more and he doesn't cough anything up, the drs.

explained that babies swallow their mucus and then poop it out.

Please let me know how Leila is doing. Good luck....be persistant

mom to 14 w/cf, Cody 11 wocf, Zoey 3 wocf, Evan 11 wks w/cf

[Guest guest]

,

OMG what a scary story! I so glad to hear you little Evan is doing better.

I guess it just reinforces what we hear about mother's intuition being right. I

still feel so new to the diagnosis of CF that I have no idea what I should or

shouldn't be concerned about. I don't even know if a FEV1 of 105 is good or

bad. I'm sure I'll be learning about that in the future. How do you take care

of all your other kids and do CPT more then 3 times per day?!? You are

supermom!!

I will let everyone know how Leila is doing. So far we have determined that

she is not excited about the taste of Septra. It's so nice to talk with people

who understand what your going through. I have friends who try very hard to be

supportive, but they really have no idea.

Keeley

Re: Baby's first illness - what now?

Keeley,

I have 2 children w/cf, one is 14 and the other is 11 wks. My son Evan is

the baby and he recently had a lung infection, he just got out of the

hospital after being there for 16 days . I was on the phone and at the cf

center 2x a week they never heard his cough so they assumed it was from

reflux because each time they listened to his lungs they said he sounded

clear, I didn't like his cough or stuffy nose but they kept assuring me that

he was fine. In the mean time my 14 year old got sick (most likely caught

it from Evan) she was admitted to the hospital and while she was there I had

Evan w/me(we were in a private room and he wore a mask, he slept most of

time) anyway Evan started coughing and the nurse looked alarmed at his

cough...I told her it was from reflux and she said " no, I don't think so

...let me go get the dr. " .

Guess what? they admitted him with a lung infection and a small part of his

lung collapsed. He's ok now, just got off of augmentin but he was on 2 i.v.

meds while in the hospital.

I just wanted to tell you to make sure you are persistant with your doctors,

just to be sure get an xray.

I was really upset with the drs. but they have been so great with my

daughter, her FEV1 is 105!!!! she wasn't diagnosed until she was 5 so I'm

nervous...even if he sneezes I'm pacing the floor. They assured me from now

on they will treat Evan differently. I'm sure that means a lot of xrays,

which also makes me nervous!

He is doing great now, I also asked the question about his cpt, I do it 3

times a day, sometimes more and he doesn't cough anything up, the drs.

explained that babies swallow their mucus and then poop it out.

Please let me know how Leila is doing. Good luck....be persistant

mom to 14 w/cf, Cody 11 wocf, Zoey 3 wocf, Evan 11 wks w/cf

[Guest guest]

,

OMG what a scary story! I so glad to hear you little Evan is doing better.

I guess it just reinforces what we hear about mother's intuition being right. I

still feel so new to the diagnosis of CF that I have no idea what I should or

shouldn't be concerned about. I don't even know if a FEV1 of 105 is good or

bad. I'm sure I'll be learning about that in the future. How do you take care

of all your other kids and do CPT more then 3 times per day?!? You are

supermom!!

I will let everyone know how Leila is doing. So far we have determined that

she is not excited about the taste of Septra. It's so nice to talk with people

who understand what your going through. I have friends who try very hard to be

supportive, but they really have no idea.

Keeley

Re: Baby's first illness - what now?

Keeley,

I have 2 children w/cf, one is 14 and the other is 11 wks. My son Evan is

the baby and he recently had a lung infection, he just got out of the

hospital after being there for 16 days . I was on the phone and at the cf

center 2x a week they never heard his cough so they assumed it was from

reflux because each time they listened to his lungs they said he sounded

clear, I didn't like his cough or stuffy nose but they kept assuring me that

he was fine. In the mean time my 14 year old got sick (most likely caught

it from Evan) she was admitted to the hospital and while she was there I had

Evan w/me(we were in a private room and he wore a mask, he slept most of

time) anyway Evan started coughing and the nurse looked alarmed at his

cough...I told her it was from reflux and she said " no, I don't think so

...let me go get the dr. " .

Guess what? they admitted him with a lung infection and a small part of his

lung collapsed. He's ok now, just got off of augmentin but he was on 2 i.v.

meds while in the hospital.

I just wanted to tell you to make sure you are persistant with your doctors,

just to be sure get an xray.

I was really upset with the drs. but they have been so great with my

daughter, her FEV1 is 105!!!! she wasn't diagnosed until she was 5 so I'm

nervous...even if he sneezes I'm pacing the floor. They assured me from now

on they will treat Evan differently. I'm sure that means a lot of xrays,

which also makes me nervous!

He is doing great now, I also asked the question about his cpt, I do it 3

times a day, sometimes more and he doesn't cough anything up, the drs.

explained that babies swallow their mucus and then poop it out.

Please let me know how Leila is doing. Good luck....be persistant

mom to 14 w/cf, Cody 11 wocf, Zoey 3 wocf, Evan 11 wks w/cf

[Guest guest]

I know what you mean about wanting your girl to have a sister. I have a younger

sister (who is also a cf carrier, but married a man who isn't) and I definitely

wanted that for my girl. Now I want a boy, too, but mainly I want a third

child. For me, 3 seems like the perfect number. One of the (many) things that

hit me so hard with this double diagnosis was the thought that we may never have

another. I wouldn't purposely have another child with CF and A1AT. Our chances

are 9 in 16 that we would have a child without either defect, but may be a

carrier of one or both. I have been looking into in vitro fertilization with

pregenetic diagnosis as a way to have a third. I have been told they can test

the embryo for both. The up side is the certainty of getting a child without

either defect, but there are several downsides - the big one being the $10,000

price tag. Well, we'll see what the future holds on this. Right now we're

still getting used to having the second one.

We found out we were having a girl the moment the ultrasound wand hit my belly

at the standard 20 week check. She opened her legs and I exclaimed " Oh wow,

it's a girl! " . The tech just smiled and agreed. During that u/s the tech

thought she saw a problem with the bowel and used a term " echogenicity " . She

was so concerned that we were referred for a level 2 ultrasound. It was really

neat because we could see so much detail. We were told by the doctor that

echogenicity in the bowel was a marker for CF and Down's syndrome. We told him

we had no family history of CF and he made some comment like " Oh, well then you

don't have to worry about that " (how stupid that seems now!). He did the u/s

and didn't see any problem. In fact, the words he used were " I'm not

impressed " . We were reassured she was normal/healthy and didn't think about it

another moment. It wasn't until we were visiting our baby in the NICU for the

first time that I remembered that u/s. I'm certain now that there was something

there, and they missed it.

Re: Baby's first illness - what now?

Ah, so you've had the crud your way too. It really hasn't been too bad.

My big girl hasn't acted even slightly ill, but she has a lgt. yellow

runny nose and night cough. I hope Leila ends up doing as well as your

Jake. Hadley has only been sick a couple times in her life, and hasn't

ever had antibiotics. She stays at home with me and while we do attend

a play group, we are careful about handwashing. I wasn't too surprised

our doc wanted us on antibiotics, but I'm not thrilled about it. I know

the antibiotics are preventative, but I hate giving them when she

doesn't need it now. What about bug resistance? We'll do what we have

too to keep her well, but I don't have to like it!

So I take it you didn't know you were having a boy before he was born?

Leila is a family name for us. It took us a long time to agree on a

second name, but when we found this one it seemed perfect. How nice

that you have a boy and a girl. My husband really wanted a boy, but I

definitely wanted another girl. Now I'd like a third to be a boy, but

we'll see if that third actually happens.

Keeley

[Guest guest]

This is one of those things that opinion varies widely on. Our doc

has always said he wants them on an antibiotic, because the excess

mucus caused by the cold is a breeding ground for bacteria.

Some parents are more hesitant to go the antibiotic route. So, you

sort of have to form your own opinion re: aggressiveness, caution re:

a/b resistence, etc.

Sorry, there are no magic answers. I hope that your babe gets better

soon.

Jen

Mommy of 7, 3 with CF- In cfparents@y..., " Keeley Browder "

wrote:

> My little Leila has her first cold. I'm not surprised, actually,

because her older sister started it and now we all have it. If Leila

were a child w/o CF I would be completely unconcerned. She has a

mild runny nose, but still smiles & plays, eating well, no fever,

sleeping fine. It started on Wednesday, and she had a little cough

then. This morning she was really coughing on awakening and couldn't

breath because her little nose was so clogged. I did CPT and she

coughed a little, but nothing came up. If today were a week day I'd

call her pulmonologist, but here we are on a weekend (aren't they

always sick on holiday/weekends?). I am concerned because I was told

if she got sick she would be put on antibiotics, but does that mean

every time she gets a runny nose? I guess I'm still unsure what I'm

supposed to be looking for. Is this CF or a cold or both? I feel

like a new parent and I'm not! I'm worried, but I'm not sure if I

should be or not. Arrrgh!

>

> Keeley, mom to Leila, 4 months wcf and Hadley, 2.5 yrs. nocf

>

>

>

[Guest guest]

Keely,

My son is 10 months old. He has two older brothers, one who is in

school full time so he is ultimately bringing home all sorts of bugs.

Luckily,until just last week, Matty has been ok. He developed a pretty bad

cough as did my middle son Jake, he's 2. I had all three of them at the doctors

a week ago. Zac,my oldest had the stomach flu. Jake had a double ear infection

and a chest infection. Matty, had an ear infection in one ear and a chest

infection. He was taken off of the Keflex and put on Biaxin for 10 days. He

had a chest x-ray that night that was clear, thank the lord!! He was on the

Keflex for staph that he cultured in MaY. He has since had two clean cultures

but the CF clinic decided to keep him on it thru the cold winter months.

I would keep an eye on the colour of the mucus coming from her nose. If it's

green/yellowish that usually means infection.

Go with your instincts. I am still new at the this too. Just remember you are

her mother and you know her better than anyone else.

Cheryl, mom to 3 boys, Zac 6 yrs. wocf, Jake 2 yrs. wocf, Matty 10 mo. wcf

Baby's first illness - what now?

My little Leila has her first cold. I'm not surprised, actually, because her

older sister started it and now we all have it. If Leila were a child w/o CF I

would be completely unconcerned. She has a mild runny nose, but still smiles &

plays, eating well, no fever, sleeping fine. It started on Wednesday, and she

had a little cough then. This morning she was really coughing on awakening and

couldn't breath because her little nose was so clogged. I did CPT and she

coughed a little, but nothing came up. If today were a week day I'd call her

pulmonologist, but here we are on a weekend (aren't they always sick on

holiday/weekends?). I am concerned because I was told if she got sick she would

be put on antibiotics, but does that mean every time she gets a runny nose? I

guess I'm still unsure what I'm supposed to be looking for. Is this CF or a

cold or both? I feel like a new parent and I'm not! I'm worried, but I'm not

sure if I should be or not. Arrrgh!

Keeley, mom to Leila, 4 months wcf and Hadley, 2.5 yrs. nocf

[Guest guest]

Cheryl,

My daughter is 17 months old and has been culturing staph for at least 6 months

now but they will not treat it all. Our doctors hold the opinion not to treat

them until they start causing problems. They believe, that lots of antibiotics

might increase your probability of having pseudomonas. I guess there different

views..... Even if she has colds and is not running a temperature they do not

prescribe any antibiotics.

So far it worked this way. But I guess nobody knows for sure whats best.

Tana, Mom to Christian 3wocf + Mira 17mths wcf

>

> My son is 10 months old. He has two older brothers, one who is in

> school full time so he is ultimately bringing home all sorts of bugs.

> Luckily,until just last week, Matty has been ok. He developed a pretty bad

> cough as did my middle son Jake, he's 2. I had all three of them at the

> doctors a week ago. Zac,my oldest had the stomach flu. Jake had a double

> ear infection and a chest infection. Matty, had an ear infection in one ear

> and a chest infection. He was taken off of the Keflex and put on Biaxin for

> 10 days. He had a chest x-ray that night that was clear, thank the lord!!

> He was on the Keflex for staph that he cultured in MaY. He has since had

> two clean cultures but the CF clinic decided to keep him on it thru the cold

> winter months.

>

> I would keep an eye on the colour of the mucus coming from her nose. If it's

> green/yellowish that usually means infection.

>

> Go with your instincts. I am still new at the this too. Just remember you

> are her mother and you know her better than anyone else.

>

> Cheryl, mom to 3 boys, Zac 6 yrs. wocf, Jake 2 yrs. wocf, Matty 10 mo. wcf

> Baby's first illness - what now?

>

>

> My little Leila has her first cold. I'm not surprised, actually, because

> her older sister started it and now we all have it. If Leila were a child

> w/o CF I would be completely unconcerned. She has a mild runny nose, but

> still smiles & plays, eating well, no fever, sleeping fine. It started on

> Wednesday, and she had a little cough then. This morning she was really

> coughing on awakening and couldn't breath because her little nose was so

> clogged. I did CPT and she coughed a little, but nothing came up. If today

> were a week day I'd call her pulmonologist, but here we are on a weekend

> (aren't they always sick on holiday/weekends?). I am concerned because I

> was told if she got sick she would be put on antibiotics, but does that mean

> every time she gets a runny nose? I guess I'm still unsure what I'm

> supposed to be looking for. Is this CF or a cold or both? I feel like a

> new parent and I'm not! I'm worried, but I'm not sure if I should be or

> not. Arrrgh!

>

> Keeley, mom to Leila, 4 months wcf and Hadley, 2.5 yrs. nocf

>

>

>

[Guest guest]

Cheryl,

My daughter is 17 months old and has been culturing staph for at least 6 months

now but they will not treat it all. Our doctors hold the opinion not to treat

them until they start causing problems. They believe, that lots of antibiotics

might increase your probability of having pseudomonas. I guess there different

views..... Even if she has colds and is not running a temperature they do not

prescribe any antibiotics.

So far it worked this way. But I guess nobody knows for sure whats best.

Tana, Mom to Christian 3wocf + Mira 17mths wcf

>

> My son is 10 months old. He has two older brothers, one who is in

> school full time so he is ultimately bringing home all sorts of bugs.

> Luckily,until just last week, Matty has been ok. He developed a pretty bad

> cough as did my middle son Jake, he's 2. I had all three of them at the

> doctors a week ago. Zac,my oldest had the stomach flu. Jake had a double

> ear infection and a chest infection. Matty, had an ear infection in one ear

> and a chest infection. He was taken off of the Keflex and put on Biaxin for

> 10 days. He had a chest x-ray that night that was clear, thank the lord!!

> He was on the Keflex for staph that he cultured in MaY. He has since had

> two clean cultures but the CF clinic decided to keep him on it thru the cold

> winter months.

>

> I would keep an eye on the colour of the mucus coming from her nose. If it's

> green/yellowish that usually means infection.

>

> Go with your instincts. I am still new at the this too. Just remember you

> are her mother and you know her better than anyone else.

>

> Cheryl, mom to 3 boys, Zac 6 yrs. wocf, Jake 2 yrs. wocf, Matty 10 mo. wcf

> Baby's first illness - what now?

>

>

> My little Leila has her first cold. I'm not surprised, actually, because

> her older sister started it and now we all have it. If Leila were a child

> w/o CF I would be completely unconcerned. She has a mild runny nose, but

> still smiles & plays, eating well, no fever, sleeping fine. It started on

> Wednesday, and she had a little cough then. This morning she was really

> coughing on awakening and couldn't breath because her little nose was so

> clogged. I did CPT and she coughed a little, but nothing came up. If today

> were a week day I'd call her pulmonologist, but here we are on a weekend

> (aren't they always sick on holiday/weekends?). I am concerned because I

> was told if she got sick she would be put on antibiotics, but does that mean

> every time she gets a runny nose? I guess I'm still unsure what I'm

> supposed to be looking for. Is this CF or a cold or both? I feel like a

> new parent and I'm not! I'm worried, but I'm not sure if I should be or

> not. Arrrgh!

>

> Keeley, mom to Leila, 4 months wcf and Hadley, 2.5 yrs. nocf

>

>

>

[Guest guest]

Cheryl,

My daughter is 17 months old and has been culturing staph for at least 6 months

now but they will not treat it all. Our doctors hold the opinion not to treat

them until they start causing problems. They believe, that lots of antibiotics

might increase your probability of having pseudomonas. I guess there different

views..... Even if she has colds and is not running a temperature they do not

prescribe any antibiotics.

So far it worked this way. But I guess nobody knows for sure whats best.

Tana, Mom to Christian 3wocf + Mira 17mths wcf

>

> My son is 10 months old. He has two older brothers, one who is in

> school full time so he is ultimately bringing home all sorts of bugs.

> Luckily,until just last week, Matty has been ok. He developed a pretty bad

> cough as did my middle son Jake, he's 2. I had all three of them at the

> doctors a week ago. Zac,my oldest had the stomach flu. Jake had a double

> ear infection and a chest infection. Matty, had an ear infection in one ear

> and a chest infection. He was taken off of the Keflex and put on Biaxin for

> 10 days. He had a chest x-ray that night that was clear, thank the lord!!

> He was on the Keflex for staph that he cultured in MaY. He has since had

> two clean cultures but the CF clinic decided to keep him on it thru the cold

> winter months.

>

> I would keep an eye on the colour of the mucus coming from her nose. If it's

> green/yellowish that usually means infection.

>

> Go with your instincts. I am still new at the this too. Just remember you

> are her mother and you know her better than anyone else.

>

> Cheryl, mom to 3 boys, Zac 6 yrs. wocf, Jake 2 yrs. wocf, Matty 10 mo. wcf

> Baby's first illness - what now?

>

>

> My little Leila has her first cold. I'm not surprised, actually, because

> her older sister started it and now we all have it. If Leila were a child

> w/o CF I would be completely unconcerned. She has a mild runny nose, but

> still smiles & plays, eating well, no fever, sleeping fine. It started on

> Wednesday, and she had a little cough then. This morning she was really

> coughing on awakening and couldn't breath because her little nose was so

> clogged. I did CPT and she coughed a little, but nothing came up. If today

> were a week day I'd call her pulmonologist, but here we are on a weekend

> (aren't they always sick on holiday/weekends?). I am concerned because I

> was told if she got sick she would be put on antibiotics, but does that mean

> every time she gets a runny nose? I guess I'm still unsure what I'm

> supposed to be looking for. Is this CF or a cold or both? I feel like a

> new parent and I'm not! I'm worried, but I'm not sure if I should be or

> not. Arrrgh!

>

> Keeley, mom to Leila, 4 months wcf and Hadley, 2.5 yrs. nocf

>

>

>