Re: Hi! Glad to find this group. . .

[Guest guest]

Welcome ,

Your intro was not too long. I like seeing how other kids come to be diagnosed.

My names M, I have 2 kids, one with cf-- age 19 and one

without--Nick age 20 almost legal. was diagnosed at age 8 months due to

electrolyte imbalances and failure to thrive, Luckily when she got on enzymes

and pregestimil she did well. Now she is in college and doing great. her lung

functions are still almost normal, she just has a little problem in her small

airways.

Anyway, welcome, hope you like it here!

love,

M

[Guest guest]

In a message dated 2/14/2003 4:44:43 PM Central Standard Time,

juliewilkins2001@... writes:

> Hi! After days of searching for the right place to

> unload, I think I've found a spot!

>

> Just five weeks ago, by daughter, Emma, was diagnosed

> with CF. She is five years old. In a nutshell,

> here's my story. . .

>

> Emma has battled multiple (seemingly minor) health

> problems since birth. By the time she was four weeks

> old, she had been in two different hospitals & was

> diagnosed with GE Reflux. She cried & vomited for

> hours on end. By the time she was 21 months old, she

> had an impressive list of diagnoses. . .failure to

> thrive, GE Reflux, milk & soy protein intolerence,

> asthma and two " aspiration " pneumonias. This resulted

> in a Nissen Fundoplication surgery to correct her

> reflux. All seemed well for a while, but I soon began

> to notice that Emma looked thin & seemed to still be

> having some reflux symptoms. They were different,

> though. . . She would cough & gag herself with her

> fingers. Her asthma seemed worse, and we wondered if

> the reflux was back. We were in & out of the doctor

> every two weeks, it seemed.

>

> It was just this past summer that I began to really

> worry. I began to notice dark circles under her eyes,

> absolutely no weight gain, & I could see every rib on

> her back. I got pats on the back from doctors,

> friends, family, & teachers. I began to take special

> notice of EVERYTHING so that I could figure this out

> for myself since I was getting no help.

>

> Ironically, I have a friend whose sister has CF. My

> friend told me that I needed, for peace of mind, to

> have the test done. Her sister has CF & muscular

> distrophy, so I really wasn't sure which symptoms

> belonged to what diagnosis. I looked CF symptoms up

> on the internet & my heart sank! It had everything on

> it but my child's name. Her poop always floated, her

> hair barely grew, she always had that cough, by this

> time, her pneumonias were up to five. I made little

> of it to my husband, who worries about everything, but

> went to the doctor to ask for a sweat test. He again,

> patted me on the back, but made an appointment for the

> test the following week so that we could " mark another

> thing off our list. " Yep. He really said that!

> Well, we did the test, repeated it the next day, &

> ended up in the hospital for twelve days with CF and

> yet another pneumonia. We were devistated at first,

> but we're adjusting more and more as the days go on.

> It has been only five weeks & Emma has gone from 30

> pounds 14 ounces to 34 1/2 pounds. She FINALLY weighs

> more than her 2 year old brother, who does not have

> CF. She doesn't have circles under her eyes, and she

> is so much happier. How can that not make us feel

> good? She's always had CF . . . now we just know what

> we need to fight! Anyway, that's my story & here I

> am. Thanks for reading my (too long) introduction.

>

>

>

Welcome to the group !! I have two daughters with CF. This is a great

group to vent with. Everyone is so understanding and supportive. So glad you

are joining in! Deb A

[Guest guest]

Hi >

Yes-Welcome! Never feel that you are unloading too much! WE are all here

to listen and try to heal together>

Lesley

Re: Hi! Glad to find this group. . .

In a message dated 2/14/2003 4:44:43 PM Central Standard Time,

juliewilkins2001@... writes:

> Hi! After days of searching for the right place to

> unload, I think I've found a spot!

>

> Just five weeks ago, by daughter, Emma, was diagnosed

> with CF. She is five years old. In a nutshell,

> here's my story. . .

>

> Emma has battled multiple (seemingly minor) health

> problems since birth. By the time she was four weeks

> old, she had been in two different hospitals & was

> diagnosed with GE Reflux. She cried & vomited for

> hours on end. By the time she was 21 months old, she

> had an impressive list of diagnoses. . .failure to

> thrive, GE Reflux, milk & soy protein intolerence,

> asthma and two " aspiration " pneumonias. This resulted

> in a Nissen Fundoplication surgery to correct her

> reflux. All seemed well for a while, but I soon began

> to notice that Emma looked thin & seemed to still be

> having some reflux symptoms. They were different,

> though. . . She would cough & gag herself with her

> fingers. Her asthma seemed worse, and we wondered if

> the reflux was back. We were in & out of the doctor

> every two weeks, it seemed.

>

> It was just this past summer that I began to really

> worry. I began to notice dark circles under her eyes,

> absolutely no weight gain, & I could see every rib on

> her back. I got pats on the back from doctors,

> friends, family, & teachers. I began to take special

> notice of EVERYTHING so that I could figure this out

> for myself since I was getting no help.

>

> Ironically, I have a friend whose sister has CF. My

> friend told me that I needed, for peace of mind, to

> have the test done. Her sister has CF & muscular

> distrophy, so I really wasn't sure which symptoms

> belonged to what diagnosis. I looked CF symptoms up

> on the internet & my heart sank! It had everything on

> it but my child's name. Her poop always floated, her

> hair barely grew, she always had that cough, by this

> time, her pneumonias were up to five. I made little

> of it to my husband, who worries about everything, but

> went to the doctor to ask for a sweat test. He again,

> patted me on the back, but made an appointment for the

> test the following week so that we could " mark another

> thing off our list. " Yep. He really said that!

> Well, we did the test, repeated it the next day, &

> ended up in the hospital for twelve days with CF and

> yet another pneumonia. We were devistated at first,

> but we're adjusting more and more as the days go on.

> It has been only five weeks & Emma has gone from 30

> pounds 14 ounces to 34 1/2 pounds. She FINALLY weighs

> more than her 2 year old brother, who does not have

> CF. She doesn't have circles under her eyes, and she

> is so much happier. How can that not make us feel

> good? She's always had CF . . . now we just know what

> we need to fight! Anyway, that's my story & here I

> am. Thanks for reading my (too long) introduction.

>

>

>

Welcome to the group !! I have two daughters with CF. This is a great

group to vent with. Everyone is so understanding and supportive. So glad you

are joining in! Deb A