Re: our story

[Guest guest]

Thanks for sharing! Everyones diagnosis is different but similar. Welcome again

and any questions fire away!

love,

your neighbor in Orange County CA

mom of age 19 wcf and Nick age 21 nocf

[Guest guest]

Thank you for the wonderful intro. You write beautifully. I am so sorry you

have been thru this horrible journey. It really is hard to believe sooooo

many missed this .This is one reason why we ant the CF AWARENESS WEEK IN

OCTOBER, to be really full blow. It will make the quiet DOCS that really

just don't think of it (CF) to always question.. Maybe we should also push

for newborn testing too. What a relief for so many to have that out ..CARE

then is so much better & helps prevent worse conditions. like you all went

thru. Gosh, I am glad you are here. Ask....tell all here & on any of the CF

lists. Enjoy.

LOVE & HUGS<

GRANMOMBEV

our story

Alrighty then, since you have all been kind of enough to share your stories,

I am flattered that you have asked about ours. I warn you...this will not

be breif. As it is 10:00 pm, kids are in bed, husband is out, I have all the

time in the world...for a change. One thing is for sure, this is one story

where no detail is fuzzy. I can recall the exact emotions when I heard the

words " has tested positive " , but I digress. Let me start from the

beginning.

was born on June 17, 1993 in Butte Montana. It was a normal, no

complication, kind of delivery. She weighed a healthy 9lbs7oz ( my son was

10lbs 14oz). At our first check up, she had lost 2 lbs. The Dr. said she was

not tolerating the formula, so we switched to soy. She was also born with a

polyp on her anus, which he said would eventually go away ( hello!!!, clue

#1 as I found out later). When was 3, we moved to Seattle. She was

always in good health, but she had really stinky pooh and was very petite. I

was never concerned about her being small because my Grandmother was only

4ft8, and my husbands mother was 5'2, so we had a family history of petite

women ( well I know for sure she does not take after me in this regard!!!)

After Seattle, we moved to Whidbey Island, about 2 hrs north. began

to cough. I took her to the Navy doc's and they said it was probably asthma

since asthma was prevalent in my family history. So they put her on

albuterol, which,

obviously, did nothing.

When was 6 we moved to Columbus Ohio. Her cough became quite

persistent and her nose was runny all the time. I took her to our family

doctor who then subjected her to allergy testing. However, nothing changed.

Last year we moved to San Diego. I had made a doctors appointment at the

NAval hospital in Camp Pendleton, because it seemed her cough was getting

worse. When the nurse took her oxygen saturation, her levels were at 84.

they were all dumbfounded! they gave her two breathing treatments to see if

it would come up. Well it did'nt. So they hospitalized her. Oh the

horror!!My husband was off at a bass fishing tournament on the Colorado

River, and I could not reach him via cell phone. My son, who was 12 at the

time was not allowed to stay overnight with me, and I could not fathom

leaving either one of them alone for the night. Especially since we had only

lived here for two months. We knew nobody. My family was hours away, yet

they were willing to make the trek down.

Finally, my best friend( who has twin toddlers) was able to tear herself

away for the night ( she lives 2 hours north) and she came to my rescue.

The next day was released. her O2 levels had come up to 96, and they

were not very willing to let her leave. I threw a big fit, threatened to

call in the commanding officer of the hospital etc, and, finally they said

ok. Well about two weeks later I took her to the emergency room because she

had a sore throat. Usually when one of my kids gets a sore throat, it is

strep. So we went in and they hooked her up to get her vitals and her O2

levels were at 92. they panicked. Gave her a breathing treatment, her levels

stayed the same. So they informed me that they were going to keep her. I

said, " no I don't think so, we are going home " . They threatened to call

child services and get a court order ( here it was 2 in the morning) and

even picked up the phone to call the MP's. Well, I gave in.

The doctor that was on duty was wonderful. She was practicing to be a

pulmonologist and was doing her residency there in the Peds clinic. She is

the one who suggested the sweat test. The lump that hit my stomach when she

mentioned CF was horrible. The next three days were horrible. However, I

always felt..no, not me, not my baby. Things like this do not happen to me.

I got on the internet and researched. had all the symptoms...the bulky

bowel movements, the fingertips, the low weight and the chronic cough. Two

days later, we got the call... " tested positive " . My life as I knew

it ended that day, and a new one began.

We met with the pulmonologist at the San Diego Naval hospital..aka Balboa.

He is an absolute godsend. He holds nothing back, yet he is gentle in his

delivery. He asked me about 's history. I told him about her polyp when

she was born, and a trip we had to take to the ER because of a rectal

prolapse. He was infuriated when he heard all of the telltale symptoms that

were never recognized. He even said that if we had been seen at military

facilities, he would have the nerve to call these doctors and point out what

idiots they were.

So, here we are today. At first it was hard...VERY hard. What gets me

through it? I think....one never knows what is going to happen. The way

medical advances are being made, it would be foolish to give up hope. But I

cannot lie, that dark cloud lingers in the back of my mind. 's cultures

have always come back with staph a. 2 weeks ago, she had her 3 month visit,

and her culture came back with MRSA ( bacteria resistant to penicillin based

antibiotics...not a good thing). Her regimen is albuterol and flovent twice

a day. She does pulmozyme ( sp) twice a day. She takes alegra to control

allergies. She also takes MT20 enzymes. 3 with meals and 2 with snacks. This

has been our biggest challenge. We cannot get her to gain weight. the child

loves to eat, but her idea of food is, chicken breast, brocoli and cheese,

fruit and veggies. She does not like the really good fatty stuff ( like her

mother does). She is 48 inches tall and weighs 54lbs. Our goal is to hit 60

lbs by next month.

We have enrolled in a trial for airway clearance by using the vest. She

will get her vest next week. Funny, she is actually looking forward to it.

A little about us. I am 35 and my husband, Damon is 37 ( our birthdays are

on the same day). We have been married for 13 years and have a 13 year old

son, Ian. they said we should get him tested also, but I do not have the

heart to do it. He has absolutely no symptoms whatsoever. I am sure that in

the future we will test him to see if he is a carrier, but for right now, he

is healthy.

Well, I will wrap it up for now. I have a ton of questions, but I can't

throw them at everybody all at once. thank you all for being so nice and

supportive.

e

[Guest guest]

That's quite the story e. Thank you so much for sharing it with us.

will love the vest. Patti is only 2.5 and loves hers. She likes not

having to lay down while doing therapy.

Dawn mom of 4, 7 and under, the youngest wcf

[Guest guest]

e,

I imagine that after all of that it is nice to some degree to just

know what is going on with your daughter.

I have been looking into MSRA. I seem to find little and get

little responce from my doc when I ask about it. I have heard that it

in some shape or form comes from those kids who have carried the staph

bacteria for a long time. WHat have you heard from your doc now that

you are dealing with it directly. How is your daughter doing at this

point? I hope that you are all well

Love to you and your kids and husband away.

Ashauna

[Guest guest]

Hi e and Welcome!

We, too have a 10 year old girl with cf and she was diagnosed not too

long ago, May 2002. a was born July 28, 1993.

In your post you do not mention any inhaled antibiotics, have your

daughter done any?

In our case, a did not have any of the tale tell signs as your

daughter, so I do not have anybody to get mad at. I still can't

shake the guilty feeling.

Well, I am still learning as I go but if you have any questions I

will be more than happy to help. This is a fantastic bunch of

people. What makes it so great is the diversty of people that we

have, from the old salty fools club to people like me that are just

learning, people from all over the world, stop here everyday. I for

one have learned a lot from here and still learning.

Welcome!

mom of a 10 wcf, Venanzio 7 nocf, Pepe 3 nocf

> Alrighty then, since you have all been kind of enough to share your

stories, I am flattered that you have asked about ours. I warn

you...this will not be breif. As it is 10:00 pm, kids are in bed,

husband is out, I have all the time in the world...for a change. One

thing is for sure, this is one story where no detail is fuzzy. I can

recall the exact emotions when I heard the words " has tested

positive " , but I digress. Let me start from the beginning.

> was born on June 17, 1993 in Butte Montana. It was a

normal, no complication, kind of delivery. She weighed a healthy

9lbs7oz ( my son was 10lbs 14oz). At our first check up, she had lost

2 lbs. The Dr. said she was not tolerating the formula, so we

switched to soy. She was also born with a polyp on her anus, which

he said would eventually go away ( hello!!!, clue #1 as I found out

later). When was 3, we moved to Seattle. She was always in

good health, but she had really stinky pooh and was very petite. I

was never concerned about her being small because my Grandmother was

only 4ft8, and my husbands mother was 5'2, so we had a family history

of petite women ( well I know for sure she does not take after me in

this regard!!!) After Seattle, we moved to Whidbey Island, about 2

hrs north. began to cough. I took her to the Navy doc's and

they said it was probably asthma since asthma was prevalent in my

family history. So they put her on albuterol, which,

> obviously, did nothing.

> When was 6 we moved to Columbus Ohio. Her cough became quite

persistent and her nose was runny all the time. I took her to our

family doctor who then subjected her to allergy testing. However,

nothing changed. Last year we moved to San Diego. I had made a

doctors appointment at the NAval hospital in Camp Pendleton, because

it seemed her cough was getting worse. When the nurse took her oxygen

saturation, her levels were at 84. they were all dumbfounded! they

gave her two breathing treatments to see if it would come up. Well it

did'nt. So they hospitalized her. Oh the horror!!My husband was off

at a bass fishing tournament on the Colorado River, and I could not

reach him via cell phone. My son, who was 12 at the time was not

allowed to stay overnight with me, and I could not fathom leaving

either one of them alone for the night. Especially since we had only

lived here for two months. We knew nobody. My family was hours away,

yet they were willing to make the trek down.

> Finally, my best friend( who has twin toddlers) was able to tear

herself away for the night ( she lives 2 hours north) and she came to

my rescue. The next day was released. her O2 levels had come

up to 96, and they were not very willing to let her leave. I threw a

big fit, threatened to call in the commanding officer of the hospital

etc, and, finally they said ok. Well about two weeks later I took her

to the emergency room because she had a sore throat. Usually when one

of my kids gets a sore throat, it is strep. So we went in and they

hooked her up to get her vitals and her O2 levels were at 92. they

panicked. Gave her a breathing treatment, her levels stayed the same.

So they informed me that they were going to keep her. I said, " no I

don't think so, we are going home " . They threatened to call child

services and get a court order ( here it was 2 in the morning) and

even picked up the phone to call the MP's. Well, I gave in.

> The doctor that was on duty was wonderful. She was practicing to

be a pulmonologist and was doing her residency there in the Peds

clinic. She is the one who suggested the sweat test. The lump that

hit my stomach when she mentioned CF was horrible. The next three

days were horrible. However, I always felt..no, not me, not my baby.

Things like this do not happen to me. I got on the internet and

researched. had all the symptoms...the bulky bowel movements,

the fingertips, the low weight and the chronic cough. Two days later,

we got the call... " tested positive " . My life as I knew it

ended that day, and a new one began.

> We met with the pulmonologist at the San Diego Naval

hospital..aka Balboa. He is an absolute godsend. He holds nothing

back, yet he is gentle in his delivery. He asked me about 's

history. I told him about her polyp when she was born, and a trip we

had to take to the ER because of a rectal prolapse. He was infuriated

when he heard all of the telltale symptoms that were never

recognized. He even said that if we had been seen at military

facilities, he would have the nerve to call these doctors and point

out what idiots they were.

> So, here we are today. At first it was hard...VERY hard. What gets

me through it? I think....one never knows what is going to happen.

The way medical advances are being made, it would be foolish to give

up hope. But I cannot lie, that dark cloud lingers in the back of my

mind. 's cultures have always come back with staph a. 2 weeks

ago, she had her 3 month visit, and her culture came back with MRSA (

bacteria resistant to penicillin based antibiotics...not a good

thing). Her regimen is albuterol and flovent twice a day. She does

pulmozyme ( sp) twice a day. She takes alegra to control allergies.

She also takes MT20 enzymes. 3 with meals and 2 with snacks. This has

been our biggest challenge. We cannot get her to gain weight. the

child loves to eat, but her idea of food is, chicken breast, brocoli

and cheese, fruit and veggies. She does not like the really good

fatty stuff ( like her mother does). She is 48 inches tall and weighs

54lbs. Our goal is to hit 60 lbs by next month.

> We have enrolled in a trial for airway clearance by using the

vest. She will get her vest next week. Funny, she is actually looking

forward to it.

>

> A little about us. I am 35 and my husband, Damon is 37 ( our

birthdays are on the same day). We have been married for 13 years and

have a 13 year old son, Ian. they said we should get him tested

also, but I do not have the heart to do it. He has absolutely no

symptoms whatsoever. I am sure that in the future we will test him to

see if he is a carrier, but for right now, he is healthy.

>

> Well, I will wrap it up for now. I have a ton of questions, but I

can't throw them at everybody all at once. thank you all for being so

nice and supportive.

>

> e

>

>

>

>

>

[Guest guest]

e,

My son was born 9 weeks premature with a meconium ileus. Even with

those symptoms he was misdiagnosed until he was 13 months old. I

can only imagine your anger that your daughter went years being

misdiagnosed.

You mentioned that your life changed forever that day. Thanks for

saying that. I have felt that way too. It is hard for others to

understand though. They keep waiting for us " get back to normal " .

They can't understand this is what is normal for us now. Everything

has changed and it is going to stay that way.

I will be 35 in January and my husband is 36. We have been married

almost 11 years. Zach is our only child.

I am glad you joined the group. I recently met a 27 yo woman wcf

that runs marathons. There are a lot of reasons to hope.

Sara - mommy of Zach 19 months wcf

> Alrighty then, since you have all been kind of enough to share

your stories, I am flattered that you have asked about ours. I warn

you...this will not be breif. As it is 10:00 pm, kids are in bed,

husband is out, I have all the time in the world...for a change. One

thing is for sure, this is one story where no detail is fuzzy. I

can recall the exact emotions when I heard the words " has

tested positive " , but I digress. Let me start from the beginning.

> was born on June 17, 1993 in Butte Montana. It was a

normal, no complication, kind of delivery. She weighed a healthy

9lbs7oz ( my son was 10lbs 14oz). At our first check up, she had

lost 2 lbs. The Dr. said she was not tolerating the formula, so we

switched to soy. She was also born with a polyp on her anus, which

he said would eventually go away ( hello!!!, clue #1 as I found out

later). When was 3, we moved to Seattle. She was always in

good health, but she had really stinky pooh and was very petite. I

was never concerned about her being small because my Grandmother was

only 4ft8, and my husbands mother was 5'2, so we had a family

history of petite women ( well I know for sure she does not take

after me in this regard!!!) After Seattle, we moved to Whidbey

Island, about 2 hrs north. began to cough. I took her to the

Navy doc's and they said it was probably asthma since asthma was

prevalent in my family history. So they put her on albuterol, which,

> obviously, did nothing.

> When was 6 we moved to Columbus Ohio. Her cough became

quite persistent and her nose was runny all the time. I took her to

our family doctor who then subjected her to allergy testing.

However, nothing changed. Last year we moved to San Diego. I had

made a doctors appointment at the NAval hospital in Camp Pendleton,

because it seemed her cough was getting worse. When the nurse took

her oxygen saturation, her levels were at 84. they were all

dumbfounded! they gave her two breathing treatments to see if it

would come up. Well it did'nt. So they hospitalized her. Oh the

horror!!My husband was off at a bass fishing tournament on the

Colorado River, and I could not reach him via cell phone. My son,

who was 12 at the time was not allowed to stay overnight with me,

and I could not fathom leaving either one of them alone for the

night. Especially since we had only lived here for two months. We

knew nobody. My family was hours away, yet they were willing to make

the trek down.

> Finally, my best friend( who has twin toddlers) was able to tear

herself away for the night ( she lives 2 hours north) and she came

to my rescue. The next day was released. her O2 levels had

come up to 96, and they were not very willing to let her leave. I

threw a big fit, threatened to call in the commanding officer of the

hospital etc, and, finally they said ok. Well about two weeks later

I took her to the emergency room because she had a sore throat.

Usually when one of my kids gets a sore throat, it is strep. So we

went in and they hooked her up to get her vitals and her O2 levels

were at 92. they panicked. Gave her a breathing treatment, her

levels stayed the same. So they informed me that they were going to

keep her. I said, " no I don't think so, we are going home " . They

threatened to call child services and get a court order ( here it

was 2 in the morning) and even picked up the phone to call the

MP's. Well, I gave in.

> The doctor that was on duty was wonderful. She was practicing to

be a pulmonologist and was doing her residency there in the Peds

clinic. She is the one who suggested the sweat test. The lump that

hit my stomach when she mentioned CF was horrible. The next three

days were horrible. However, I always felt..no, not me, not my

baby. Things like this do not happen to me. I got on the internet

and researched. had all the symptoms...the bulky bowel

movements, the fingertips, the low weight and the chronic cough. Two

days later, we got the call... " tested positive " . My life as

I knew it ended that day, and a new one began.

> We met with the pulmonologist at the San Diego Naval

hospital..aka Balboa. He is an absolute godsend. He holds nothing

back, yet he is gentle in his delivery. He asked me about 's

history. I told him about her polyp when she was born, and a trip we

had to take to the ER because of a rectal prolapse. He was

infuriated when he heard all of the telltale symptoms that were

never recognized. He even said that if we had been seen at military

facilities, he would have the nerve to call these doctors and point

out what idiots they were.

> So, here we are today. At first it was hard...VERY hard. What

gets me through it? I think....one never knows what is going to

happen. The way medical advances are being made, it would be foolish

to give up hope. But I cannot lie, that dark cloud lingers in the

back of my mind. 's cultures have always come back with staph

a. 2 weeks ago, she had her 3 month visit, and her culture came back

with MRSA ( bacteria resistant to penicillin based antibiotics...not

a good thing). Her regimen is albuterol and flovent twice a day.

She does pulmozyme ( sp) twice a day. She takes alegra to control

allergies. She also takes MT20 enzymes. 3 with meals and 2 with

snacks. This has been our biggest challenge. We cannot get her to

gain weight. the child loves to eat, but her idea of food is,

chicken breast, brocoli and cheese, fruit and veggies. She does not

like the really good fatty stuff ( like her mother does). She is 48

inches tall and weighs 54lbs. Our goal is to hit 60 lbs by next

month.

> We have enrolled in a trial for airway clearance by using the

vest. She will get her vest next week. Funny, she is actually

looking forward to it.

>

> A little about us. I am 35 and my husband, Damon is 37 ( our

birthdays are on the same day). We have been married for 13 years

and have a 13 year old son, Ian. they said we should get him tested

also, but I do not have the heart to do it. He has absolutely no

symptoms whatsoever. I am sure that in the future we will test him

to see if he is a carrier, but for right now, he is healthy.

>

> Well, I will wrap it up for now. I have a ton of questions, but I

can't throw them at everybody all at once. thank you all for being

so nice and supportive.

>

> e

>

>

>

>

>