Re: 2 yo son just diagnosed

[Guest guest]

HI,

I also have a son who will be 2 in April, . I had him 6 weeks premature,

and he was born with a bowel obstruction (meconium ilius) He was airlifted to

the nearest large city, Spokane Wa and at 12 hrs old he had a colostomy done.

the surgeon informed us that 85% babies born with meconium ilius have cf. we

were in complete shock and were even in denial for awhile. next day Dna test was

done to confirm dx ,and a week later we knew the cold hard truth. I am 40,

husband 41 we have been together 18 years, only married 4. I took better care of

myself during pregnancy than ever before even took prenatal water arobeics . I

didn't think I could get pregnant (no birth control for 8 yrs) so I was very

excited. so I completely understand and feel your pain with this dx. I didn't

read any cf books at first or look on the web for probably the first 6-8 months,

couldn't bring myself to know the truth I guess, now im like a sponge I want to

know everything. this group has helped me so much I don't post often but read

and learn daily. it is a very scary disease ,fear of the unknown! but take one

day at a time and keep your chin up it will get easier as time goes on. good

luck and keep us posted.

amy mom to 22 months w/cf

-- Original Message -----

To: cfparents

Sent: Monday, February 24, 2003 6:36 PM

Subject: 2 yo son just diagnosed

From the time my son was 3 weeks old he has been sick with some sort

of respritory problem or another and has always had real bad

diarhea. We have, for 2 years now, tried to find out what was wrong

with our baby. It finally took a trip to the ER just before x-mas

for them to decided to test him for CF. I have brought this up with

my dr.s 2 times in the last year (testing him). I was lead to

believe that it was am impossible diagnosis because we had no family

history. To my sadness this is not a true assumption. This past

wednesday we finally had his sweat test and by that afternoon we knew

the results. I am completly shocked at the results. Thursday was a

long confusing day with all the info I recieved from his Dr.s.

Needless to say I am still confused and struggling through this

initial dose of info. Any tips on how I can grasp all this info and

remember the important things would be wonderful. I would appreciate

all the help I can get from anyone who knows what this is like,

because I feel like my world just fell apart.

[Guest guest]

HI,

I also have a son who will be 2 in April, . I had him 6 weeks premature,

and he was born with a bowel obstruction (meconium ilius) He was airlifted to

the nearest large city, Spokane Wa and at 12 hrs old he had a colostomy done.

the surgeon informed us that 85% babies born with meconium ilius have cf. we

were in complete shock and were even in denial for awhile. next day Dna test was

done to confirm dx ,and a week later we knew the cold hard truth. I am 40,

husband 41 we have been together 18 years, only married 4. I took better care of

myself during pregnancy than ever before even took prenatal water arobeics . I

didn't think I could get pregnant (no birth control for 8 yrs) so I was very

excited. so I completely understand and feel your pain with this dx. I didn't

read any cf books at first or look on the web for probably the first 6-8 months,

couldn't bring myself to know the truth I guess, now im like a sponge I want to

know everything. this group has helped me so much I don't post often but read

and learn daily. it is a very scary disease ,fear of the unknown! but take one

day at a time and keep your chin up it will get easier as time goes on. good

luck and keep us posted.

amy mom to 22 months w/cf

-- Original Message -----

To: cfparents

Sent: Monday, February 24, 2003 6:36 PM

Subject: 2 yo son just diagnosed

From the time my son was 3 weeks old he has been sick with some sort

of respritory problem or another and has always had real bad

diarhea. We have, for 2 years now, tried to find out what was wrong

with our baby. It finally took a trip to the ER just before x-mas

for them to decided to test him for CF. I have brought this up with

my dr.s 2 times in the last year (testing him). I was lead to

believe that it was am impossible diagnosis because we had no family

history. To my sadness this is not a true assumption. This past

wednesday we finally had his sweat test and by that afternoon we knew

the results. I am completly shocked at the results. Thursday was a

long confusing day with all the info I recieved from his Dr.s.

Needless to say I am still confused and struggling through this

initial dose of info. Any tips on how I can grasp all this info and

remember the important things would be wonderful. I would appreciate

all the help I can get from anyone who knows what this is like,

because I feel like my world just fell apart.

[Guest guest]

Please send me your mailing address & I will send you much info , tapes,

booklets ...that actually contain all the info they tell you, BUT you can

sit at home & quietly read as you have time & let it sink in. It is NOT a

booklet & information By Dr's DOOM & GLOOM either. .I will be happy to send

to you as I do many folks. It truly helps.

LOVE & HUGS, GrandmomBEV

2 yo son just diagnosed

From the time my son was 3 weeks old he has been sick with some sort

of respritory problem or another and has always had real bad

diarhea. We have, for 2 years now, tried to find out what was wrong

with our baby. It finally took a trip to the ER just before x-mas

for them to decided to test him for CF. I have brought this up with

my dr.s 2 times in the last year (testing him). I was lead to

believe that it was am impossible diagnosis because we had no family

history. To my sadness this is not a true assumption. This past

wednesday we finally had his sweat test and by that afternoon we knew

the results. I am completly shocked at the results. Thursday was a

long confusing day with all the info I recieved from his Dr.s.

Needless to say I am still confused and struggling through this

initial dose of info. Any tips on how I can grasp all this info and

remember the important things would be wonderful. I would appreciate

all the help I can get from anyone who knows what this is like,

because I feel like my world just fell apart.

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

[Guest guest]

Please send me your mailing address & I will send you much info , tapes,

booklets ...that actually contain all the info they tell you, BUT you can

sit at home & quietly read as you have time & let it sink in. It is NOT a

booklet & information By Dr's DOOM & GLOOM either. .I will be happy to send

to you as I do many folks. It truly helps.

LOVE & HUGS, GrandmomBEV

2 yo son just diagnosed

From the time my son was 3 weeks old he has been sick with some sort

of respritory problem or another and has always had real bad

diarhea. We have, for 2 years now, tried to find out what was wrong

with our baby. It finally took a trip to the ER just before x-mas

for them to decided to test him for CF. I have brought this up with

my dr.s 2 times in the last year (testing him). I was lead to

believe that it was am impossible diagnosis because we had no family

history. To my sadness this is not a true assumption. This past

wednesday we finally had his sweat test and by that afternoon we knew

the results. I am completly shocked at the results. Thursday was a

long confusing day with all the info I recieved from his Dr.s.

Needless to say I am still confused and struggling through this

initial dose of info. Any tips on how I can grasp all this info and

remember the important things would be wonderful. I would appreciate

all the help I can get from anyone who knows what this is like,

because I feel like my world just fell apart.

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

[Guest guest]

Hi there,

I know exactly how you feel, however, I was " lucky " enough, don't feel lucky

but, we were lucky enough to have a diagnosis almost right from birth. We too,

have no family history of cf, so I can relate with you there. I was so shocked

too. You keep shaking your head, right?, saying how can this be, how can this

be happening. I still sometimes do that and my son just turned one a few weeks

ago. I was going thru all that one year ago.

Now here we are, one year later, my son, touch wood, has been pretty healthy.

Since he had an early diagnosis, we have been blessed with wonderful doctors

etc. who have given us the tools we need to keep him healthy. He has enzymes

with all his meals, takes vitamins and sometimes some antibiotics though we just

found out after three clear throat cultures that he can go off of his Keflex for

now. Yahoo!! We also do physical therapy on him twice a day to prevent mucus

build up in his lungs. He doesn't like it much but hey, too bad, we do it

anyway!!

You will get thru this , you will still be angry and sad and mad sometimes but

it will get better. It has too. We are all here for you, we have all felt as

you are now!! I don't know what I would do without this site, just to read the

posts day in and day out. I don't write a lot but in the beginning , I wrote

all the time and everyone helped me, answered my questions, dried my tears for

me so to speak, just helped me . No one can understand what you are going thru

like all of us. We know what you are going thru.

Hope this helps....take each day as it comes.

Love,

Cheryl from Canada, mom to 3 boys, Zac 7 yrs. wocf, Jake 2 yrs. wocf, Matty 1

yrs. wcf

2 yo son just diagnosed

From the time my son was 3 weeks old he has been sick with some sort

of respritory problem or another and has always had real bad

diarhea. We have, for 2 years now, tried to find out what was wrong

with our baby. It finally took a trip to the ER just before x-mas

for them to decided to test him for CF. I have brought this up with

my dr.s 2 times in the last year (testing him). I was lead to

believe that it was am impossible diagnosis because we had no family

history. To my sadness this is not a true assumption. This past

wednesday we finally had his sweat test and by that afternoon we knew

the results. I am completly shocked at the results. Thursday was a

long confusing day with all the info I recieved from his Dr.s.

Needless to say I am still confused and struggling through this

initial dose of info. Any tips on how I can grasp all this info and

remember the important things would be wonderful. I would appreciate

all the help I can get from anyone who knows what this is like,

because I feel like my world just fell apart.

[Guest guest]

Take a deep breath .Buy a pocket note pad/book maybe a planner of some sort

..Any questions you have write them down .It is at first so confusing and hard

to grasp.Write down what the doctor says if you need too so you can go back

over later when you are less stressed (clinic visits can still be stressful

even after 19 years).I am glad you found this group.I am sorry your child has

cf , it is not the end of the world you have just stepped into a new world

..Hopefully your child will improve with treatment quickly and life will

become easier for you all.BeckyB. Mama to 8 kids,2w/cf,and Nana to 2

[Guest guest]

You can make it through this. Just go on automatic for awhile and one day

you'll notice that the numbness has disappeared.

It is confusing when all of the specialists begin to throw stuff at you and

insist you become an expert in it yesterday. Gird up your belt and dive in.

Learning as much as you can will help stave off the despair that can follow a

diagnosis. The good thing about this list is that we have all been where you

are and we all have made through to some point or another.

At least now you have the diagnosis and you can begin to help your son get well.

love and good wishes,

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

[Guest guest]

Our daughter was 2 as well when she was

diagnosed. As well we felt the world was caving in on

us. But look at it this way, you now know what your

boy has and can now take care of him the right way. If

you need anything please email us whenever.

Traci & parents of 3 girls no cf

no cf, Allsion cf.

From the time my son was 3 weeks old he has been sick

with some sort

of respritory problem or another and has always had

real bad

diarhea.  We have, for 2 years now, tried to find out

what was wrong

with our baby.  It finally took a trip to the ER just

before x-mas

for them to decided to test him for CF.  I have brought

this up with

my dr.s 2 times in the last year (testing him).  I was

lead to

believe that it was am impossible diagnosis because we

had no family

history.  To my sadness this is not a true assumption. 

This past

wednesday we finally had his sweat test and by that

afternoon we knew

the results.  I am completly shocked at the results. 

Thursday was a

long confusing day with all the info I recieved from

his Dr.s. 

Needless to say I am still confused and struggling

through this

initial dose of info.  Any tips on how I can grasp all

this info and

remember the important things would be wonderful.  I

would appreciate

all the help I can get from anyone who knows what this

is like,

because I feel like my world just fell apart.

[Guest guest]

((Hugs)). I can totally relate. My son was just diagnosed 4 weeks ago

and he's 18mos. We also have no family history. I have found this

list helpful and I'm sure you will too

Wendi

Mom to Keira (3 wocf) and (18ms wcf)

> From the time my son was 3 weeks old he has been sick with some

sort

> of respritory problem or another and has always had real bad

> diarhea. We have, for 2 years now, tried to find out what was

wrong

> with our baby. It finally took a trip to the ER just before x-mas

> for them to decided to test him for CF. I have brought this up

with

> my dr.s 2 times in the last year (testing him). I was lead to

> believe that it was am impossible diagnosis because we had no

family

> history. To my sadness this is not a true assumption. This past

> wednesday we finally had his sweat test and by that afternoon we

knew

> the results. I am completly shocked at the results. Thursday was

a

> long confusing day with all the info I recieved from his Dr.s.

> Needless to say I am still confused and struggling through this

> initial dose of info. Any tips on how I can grasp all this info

and

> remember the important things would be wonderful. I would

appreciate

> all the help I can get from anyone who knows what this is like,

> because I feel like my world just fell apart.

[Guest guest]

Sorry to hear has Cf. Your world , as you knew it, did fall

apart. Those first months even year are hard. I was on automatic pilot

for about 1 year, then suddenly without noticing, Cf didn't consume my

every thought. your world will get back to normal. Not the normal of

most people, but the normal your family will create with cf being only 1

aspect of it. Let yourselves grieve for the life you've lost and the

new life you now have to face.

WE took a note pad and wrote things down. WE had lists for everything

as we couldn't take a lot in, mainly because we were in a void. Things

will get better. You'll get so much great advice and even though at the

moment you might not think it, this list also provides some great

humour.

(Australia)

Mummy to Liam 8.6 wocf & Eilish 5.6 wcf

Re: 2 yo son just diagnosed

Our daughter was 2 as well when she was

diagnosed. As well we felt the world was caving in on

us. But look at it this way, you now know what your

boy has and can now take care of him the right way. If

you need anything please email us whenever.

Traci & parents of 3 girls no cf

no cf, Allsion cf.

From the time my son was 3 weeks old he has been sick

with some sort

of respritory problem or another and has always had

real bad

diarhea. We have, for 2 years now, tried to find out

what was wrong

with our baby. It finally took a trip to the ER just

before x-mas

for them to decided to test him for CF. I have brought

this up with

my dr.s 2 times in the last year (testing him). I was

lead to

believe that it was am impossible diagnosis because we

had no family

history. To my sadness this is not a true assumption.

This past

wednesday we finally had his sweat test and by that

afternoon we knew

the results. I am completly shocked at the results.

Thursday was a

long confusing day with all the info I recieved from

his Dr.s.

Needless to say I am still confused and struggling

through this

initial dose of info. Any tips on how I can grasp all

this info and

remember the important things would be wonderful. I

would appreciate

all the help I can get from anyone who knows what this

is like,

because I feel like my world just fell apart.

[Guest guest]

I am sorry to hear of your son's diagnosis. I hope you find the

support and answers you need here as I'm sure you will. This is a

wonderful group of people. My advice especially since you are

overwhelmed is to take it slowly at first and allow yourself to

grieve and go through your range of emotions you are surely feeling

right now. Read a little a day or whatever you feel you can handle

then give yourself some time to just enjoy your son. Hopefully now

you can get him into a stable condition w/ not as much illness. Love

and support,

Christy Mom of Wyatt 7wcf and Hunter 3wocf

> From the time my son was 3 weeks old he has been sick with some

sort

> of respritory problem or another and has always had real bad

> diarhea. We have, for 2 years now, tried to find out what was

wrong

> with our baby. It finally took a trip to the ER just before x-mas

> for them to decided to test him for CF. I have brought this up

with

> my dr.s 2 times in the last year (testing him). I was lead to

> believe that it was am impossible diagnosis because we had no

family

> history. To my sadness this is not a true assumption. This past

> wednesday we finally had his sweat test and by that afternoon we

knew

> the results. I am completly shocked at the results. Thursday was

a

> long confusing day with all the info I recieved from his Dr.s.

> Needless to say I am still confused and struggling through this

> initial dose of info. Any tips on how I can grasp all this info

and

> remember the important things would be wonderful. I would

appreciate

> all the help I can get from anyone who knows what this is like,

> because I feel like my world just fell apart.

[Guest guest]

-Amy, although Wyatt was not premature my story is so close to yours

w/ the surgery, the denial and not wanting to know much information.

Only it took me a lot longer to come around to being a sponge than it

did you. Just thought I'd share. Christy MOm of Wyatt 7wcf and Hunter

3wocf

-- In cfparents , " Amy Finke " <sillapoop@h...> wrote:

>

> HI,

>

> I also have a son who will be 2 in April, . I had him 6 weeks

premature, and he was born with a bowel obstruction (meconium ilius)

He was airlifted to the nearest large city, Spokane Wa and at 12 hrs

old he had a colostomy done. the surgeon informed us that 85% babies

born with meconium ilius have cf. we were in complete shock and were

even in denial for awhile. next day Dna test was done to confirm

dx ,and a week later we knew the cold hard truth. I am 40, husband 41

we have been together 18 years, only married 4. I took better care of

myself during pregnancy than ever before even took prenatal water

arobeics . I didn't think I could get pregnant (no birth control for

8 yrs) so I was very excited. so I completely understand and feel

your pain with this dx. I didn't read any cf books at first or look

on the web for probably the first 6-8 months, couldn't bring myself

to know the truth I guess, now im like a sponge I want to know

everything. this group has helped me so much I don't post often but

read and learn daily. it is a very scary disease ,fear of the

unknown! but take one day at a time and keep your chin up it will get

easier as time goes on. good luck and keep us posted.

>

> amy mom to 22 months w/cf

>

>

>

> -- Original Message -----

> From: cgrldreams <blueyecowgrl1978@a...>

> To: cfparents

> Sent: Monday, February 24, 2003 6:36 PM

> Subject: 2 yo son just diagnosed

>

>

> From the time my son was 3 weeks old he has been sick with some

sort

> of respritory problem or another and has always had real bad

> diarhea. We have, for 2 years now, tried to find out what was

wrong

> with our baby. It finally took a trip to the ER just before x-

mas

> for them to decided to test him for CF. I have brought this up

with

> my dr.s 2 times in the last year (testing him). I was lead to

> believe that it was am impossible diagnosis because we had no

family

> history. To my sadness this is not a true assumption. This past

> wednesday we finally had his sweat test and by that afternoon we

knew

> the results. I am completly shocked at the results. Thursday

was a

> long confusing day with all the info I recieved from his Dr.s.

> Needless to say I am still confused and struggling through this

> initial dose of info. Any tips on how I can grasp all this info

and

> remember the important things would be wonderful. I would

appreciate

> all the help I can get from anyone who knows what this is like,

> because I feel like my world just fell apart.

>

>

>

>

[Guest guest]

Hello,

You are not alone. Now you know, he can start getting

the treatment he needs. The unfortunate fact is that

there needn't be any history of cf in either of your

families for it to be lurking in your and your dh's

genes. More often than not there isn't a history

of it. Many people with cf were never even diagnosed.

Their conditions were attributed to pneumonia,

tuberculosis or other illnesses. CF was only given

a name in the 30's, so prior to that there wouldn't

be a record of the disease.

The good news is that today's treatments are giving

people with cf a better outcome than ever before.

There are those with cf who are living well into

their 40's, 50's, and 60's and beyond. Children

born today with CF are looking at a bright future.

There are alot of people working diligently for a

cure, and good things are coming out of genetic

research.

Still, the best medicine is a positive outlook and

staying informed. By joining this list, you'll

be getting great support and information.

hugs,

C

Mommy to Mick and Alli, 3 yo twins wcf

--- " cgrldreams "

wrote:

> From the time my son was 3 weeks old he has been

> sick with some sort

> of respritory problem or another and has always had

> real bad

> diarhea. We have, for 2 years now, tried to find

> out what was wrong

> with our baby. It finally took a trip to the ER

> just before x-mas

> for them to decided to test him for CF. I have

> brought this up with

> my dr.s 2 times in the last year (testing him). I

> was lead to

> believe that it was am impossible diagnosis because

> we had no family

> history. To my sadness this is not a true

> assumption. This past

> wednesday we finally had his sweat test and by that

> afternoon we knew

> the results. I am completly shocked at the results.

> Thursday was a

> long confusing day with all the info I recieved from

> his Dr.s.

> Needless to say I am still confused and struggling

> through this

> initial dose of info. Any tips on how I can grasp

> all this info and

> remember the important things would be wonderful. I

> would appreciate

> all the help I can get from anyone who knows what

> this is like,

> because I feel like my world just fell apart.

>

>

>

[Guest guest]

This sounds all too familiar to us. Only it took until our daughter was 10

years old to find out what was wrong. There were visits to the er where

they would tell her to " stop coughing " some even told us " nothing was wrong

with her " . She went through so many invasive tests that I can't count them

on my fingers. And it wasn't until an intern in the middle of the night

when she was in the ICU suffering from malnutrition and an extreme upper

respiratory infection that he suggested that she be tested for CF. It was

quite a shock for us. As far as the family history. Nobody wanted to stand

up and understand it could be handed down, because it wasn't until recently

that people knew why people were dying from it - they thought it was

infection or malnutrition things like that. When we found out we were so

angry, we tried to sue the doctors. The lawyers told us they couldn't do a

thing for us because it wouldn't have changed the outcome of the diagnosis.

My daughter said " let them try having their lives turned upside down for

over 9 years " . She's a tough cookie! The good news is, since the

diagnosis, she has been a healthier child. She has rough times, but no

where near like before and now we know the enemy and can fight it with all

our might. It will take a while to get use to it, and its okay for you to

feel sorry for yourself and your child for as long as it takes. We still go

through phases. Hang in there!

G

from MD, mom of sammy 14 w/cf and two little brother w/no CF