New to the group

April 22, 2003

Welcome to the group Libby!

Debbie with twins

- Jordan (ASD) 2.5yo

- (NT) 2.5yo

April 22, 2003

Hi Libby and welcome to the group. I know you will find the support,

encouragement, acceptance and understanding here that we all so desperately

need.

Love, prayers and heart hugs,

Debbie (GA), Mom to Evan (4.5 y/o with ToF, RBBB, Autism Spectrum Disorder,

Asthma); (now a whole year old and HH and NT?); and my 3 angel babies

whom I will finally see when God says it's time!

9:1-3

============================================================

Date: 2003/04/22 Tue PM 12:29:00 EDT

To: parenting_autism

Subject: New to the group

============================================================

April 22, 2003

Greetings Libby! I am Missy, mom to 5.. (13, ADD), Robby(11, emotional but

OK), JB(9, possible ADHD), (7, mild unknown LD) and Ashlyn(almost 3, dx

unknown but full of issues..possible HFA)...was homeschooling but now they are

back in public since we moved to a small country town from Atlanta(now in

Centre, AL)..welcome to the group..these ladies have been nothing but wonderful

and supportive since I have been here!!!

Missy in AL

wife, mother, homesteader, writer, student, teacher, dreamer

New to the group

Hello everyone,

I have 3 boys 8, 7, and 5 1/2. My oldest is " typical " my middle is

ADHD, and my youngest is PDD-NOS with a mild sezuire disorder.

My dh and I both work full time, and he is attempting to go to night

school. We are tired all the time, and is hard playing pass the kids

and juggling all the schedules. I am fortunate to have my two younger

boys in a private school for kids with ASD along with their typical

peers. They are doing well there. I am worried about my 7 year old.

He is struggling with reading and it is frustrating to see him try so

hard. My youngest son is doing good. He is verbal, but no

conversation yet. He is starting to answer small questions and can

ask for things he wants. He is finally potty trained during the day,

but latley he has been having accidents. I am hoping he is just

intersted in what he is doing and forgets. It never happens in the

house- always ouside.

Anyway..I ramble, sorry.

Life is hard sometimes and beautiful others .

I look forward to getting to know you all, and hear about your lives

and experiances.

Take care,

Libby

April 22, 2003

Welcome Libby! I have two boys 29 months who is ASD and 4 on May

10th (who is NT).

This is a great place!!

Warm Regards

& ASD 11/25/00 in Maine

Re: New to the group

Welcome, Libby!

My name is , I am a stay at home mom in the Atlanta area to n

(3 in July) who we think is moving toward an HFA dx (will find out in Oct),

and Phoebe (10 mo today).

I don't know how you do it with working, I can't imagine trying to manage

the kids and work at the same time. I'm curious about your school for ASD

kids ... where are you located and what is the school like?

(SAHM in GA)

MSN elizabethloht@...

n 33, mo, no formal dx

Phoebe, 10 wks

----- Original Message -----

> Hello everyone,

> I have 3 boys 8, 7, and 5 1/2. My oldest is " typical " my middle is

> ADHD, and my youngest is PDD-NOS with a mild sezuire disorder.

> My dh and I both work full time, and he is attempting to go to night

> school. We are tired all the time, and is hard playing pass the kids

> and juggling all the schedules. I am fortunate to have my two younger

> boys in a private school for kids with ASD along with their typical

> peers. They are doing well there. I am worried about my 7 year old.

> He is struggling with reading and it is frustrating to see him try so

> hard. My youngest son is doing good. He is verbal, but no

> conversation yet. He is starting to answer small questions and can

> ask for things he wants. He is finally potty trained during the day,

> but latley he has been having accidents. I am hoping he is just

> intersted in what he is doing and forgets. It never happens in the

> house- always ouside.

> Anyway..I ramble, sorry.

> Life is hard sometimes and beautiful others .

> I look forward to getting to know you all, and hear about your lives

> and experiances.

> Take care,

> Libby

April 22, 2003

Hi Libby,

Welcome to the list. Where are you from?

Ramble anytime, hon, that's what we're here for.

Tuna

=====

mom to:

, 8, ASD

, 4, NT

Normal is just a setting on the washing machine.

- Whoopi Goldberg

______________________________________________________________________

Post your free ad now! http://personals.yahoo.ca

August 19, 2003

Kristi, welcome aboard our wildly tossing big ship on a wild sea!

Glad you made it to us! Thank you for choosing cfparents; I think

that it is the very best list in cyberspace for those coping with cf.

But, then I have my own biases, too! Do not panic if you do not get

responses right away. This is the August vacation/kids back to school

slump, but we are here and do thank you for choosing our list to join!

Dive right in; the water is always fine!

Love to you and to yours,

n Rojas

August 19, 2003

Welcome to this group. I think that you will enjoy it.

I am so glad that you know about your baby's CF already. It will

allow you to take good care of him right away. Many of us didn't

learn about CF until our children (or in my case grandchild) were

really sick. It's hard to know that things aren't the way you had

wished, but he will still be PERFECT! Congratulations! I am really

excited for you!

Gale

> Hi my name is Kristi. I'm due late nov with my first child. He has

> cf. I found out a couple of months ago. I learning as much as i can

> to prepare myself. I didn't know anything about before cf before

all

> this. It's alot to take in. So much to know. Any help for a soon to

> be new parent would be gladly appreciated.

August 19, 2003

Kristi,

Where do you live? What made you check for CF? It was a really

smart move.

Gale

> Hi my name is Kristi. I'm due late nov with my first child. He has

> cf. I found out a couple of months ago. I learning as much as i can

> to prepare myself. I didn't know anything about before cf before

all

> this. It's alot to take in. So much to know. Any help for a soon to

> be new parent would be gladly appreciated.

August 19, 2003

HI Kristi and all,

I'm sorry to hear your baby has cf. I, on the other hand think it's great he is

already diagnosed and you are already learning about it. This is a great list

and I know you'll get plenty of support and advice.

We just got home Sunday from Yellowstone and various other places, we went to

Vegas and saw the white tigers, we went to Zion Natl Park and Bryce Canyon in

Utah, also Rocky Mnt Natl Park and was great but *I* couldn't breathe(I

have asthma!) We went to the Grand Tetons and The Craters of the Moon in Idaho

and Crater Lake in Oregon, plus the Redwood Forest in Northern CA, SF, Monterrey

Bay Aquarium and finally home. We had a great time, but now that we are home

is sick. She already had to start school yesterday and went sick, she

went to her morning class today but not the afternoon. I've gotten her Tobi

refilled and she has a clinic appt for next week, hopefully she'll be OK to wait

till then. I am hoping the Tobi will help.

Anyway we're back in case anyone missed us! I think I forgot to write to tell

you we were going!

love,

M

August 19, 2003

I've lived in land most of my live. We just moved to virginia beach 2

months ago to be close my family. My doctor checked with my first blood

work. I didn't even know she did it. That when I found out I was a

cairier.We didn't even know it ran in my family nor did Jeff. He then got

tested.When we both were cairiers I decided to have a cvs. I needed to know.

>

>Reply-To: cfparents

>To: cfparents

>Subject: Re: New to the group

>Date: Tue, 19 Aug 2003 22:02:16 -0000

>

>Kristi,

>

>Where do you live? What made you check for CF? It was a really

>smart move.

>

>Gale

>

> > Hi my name is Kristi. I'm due late nov with my first child. He has

> > cf. I found out a couple of months ago. I learning as much as i can

> > to prepare myself. I didn't know anything about before cf before

>all

> > this. It's alot to take in. So much to know. Any help for a soon to

> > be new parent would be gladly appreciated.

>

_________________________________________________________________

Get MSN 8 and help protect your children with advanced parental

controls. http://join.msn.com/?page=features/parental

August 19, 2003

In a message dated 8/19/2003 4:58:02 PM Central Daylight Time,

tyler1401@... writes:

> Kristi

I am a Mom of three and two of them have CF we were not diagnosed until my

oldest was 6 and my youngest was 1. It is GREAT that you are finding out so

soon! That is the best thing for you child know as soon as you do. There is a

lot

of new advances in CF so don't be down in the dumps about this diagnoses I

know that is hard to understand but of any disease in the world this one they

are

getting close to a cure. Our doctor told us when we were diagnosed he thought

there would be one in the next 10 years and I am holding him to it he has 5

more years to go! Have you found out what mutation you child is carrying? How

did you know so soon? Where do you live? If you have any questions there are a

lot of knowledgeable people on here that can help so ask away. Deb A

August 19, 2003

In a message dated 8/19/2003 5:59:31 PM Central Daylight Time,

brmorey@... writes:

> M

You must have been gone for a month!! That is seeing a lot!!! I hope you had

fun!! It's always nice to get away. Glad your back save and sound!! Deb A

August 19, 2003

We didn't know that we were carriers either. We are not aware of

anyone with cf on either side. I didn't even know what cf was. Now,

I tell everyone about cf. I want everyone to know what cf is, so

that maybe they'll donate to a fund raiser or think twice before they

light a cigarette.

My grand daughter was diagnosed with cf at 3 months age. She is now

19 months old. I think that she is the cutest, smartest baby ever.

I've noticed that people with cf are exceptionally smart.

We live in Ohio and my grand daughter, Abigail (Abby), lives about a

mile away from us. I love having her so close. She's my only grand

baby, so she gets a lot of attention.

Will your son arrive in time for Thanksgiving?

Gale

August 19, 2003

Hi Kristi,

Welcome to the group. We are happy to answer any questions you have. I am

sorry that your baby has CF but knowing ahead will really make a difference in

his health. You will be able to learn about what you will need to do before he

is born, rather than having a sick baby and trying to get someone to figure out

the problem. It is really to his benefit and yours that you have the diagnosis

before birth. If I had known that I was a carrier and my husband was too, we

would have also had pre-natal testing to find out if the baby had CF. I would

have needed to know too. You will find that many of us had " No idea it was in

either family "

Keep us updated and ask any questions you want.

Mom of 4 & 1/2 with CF

check out http://groups.msn.com/TeamJane to read our story

New to the group

Hi my name is Kristi. I'm due late nov with my first child. He has

cf. I found out a couple of months ago. I learning as much as i can

to prepare myself. I didn't know anything about before cf before all

this. It's alot to take in. So much to know. Any help for a soon to

be new parent would be gladly appreciated.

August 20, 2003

Kristi,

Welcome to our beloved cyber world.....You are one of the few lucky ones to

have the prenatal screening available to you without you specifically

requesting it. Now that you know, you can prepare yourself and start treatment

as soon

as he is born. Hopefully your doctor will be doing regular ultrasounds to

make sure your boy does not get a bowel obstruction. Are you near a CF center?

I know things will be very overwhelming after he is born, but we are here to

help you in any way we can. Don't be scared if the docs want to put your son

on a lot of meds from the start. If you are unsure of why he is being given a

med, just ask. There is always someone here on the list that has been there

and done that and can help you.

My son is 5 and a half years old and we found out when he was 3 weeks old

that he had CF. He was born with Mecconium Illeus that ruptured in utero. He

underwent surgery at 5 hours old to repair the ruptured intestine and another

surgery at 5 weeks old to reconnect the intestine. He was started on Pulmozyme

at 4 months of age along with albuterol treatments, of course the enzymes too.

I believe he has been very healthy, lung wise, because of early intervention.

Again, welcome!!

Dawn

mom to Tyler 5 w CF

August 20, 2003

Welcome to this group.

I wish that we had known about our daughter from day one. We would have

spent less time doing 99 different tests and doctors. Children with CF are

very unique and wonderful children. They certainly give us a different way

at looking at life.

Love your baby and take care of it just like you would any other child. The

only difference is that there may be some additional medical treatments to

do. There are no limits for these children, just the ones we impose on

them. They can do and be whatever they want. Congratulations and Best

wishes to your family.

Tina W. mother of Steph wcf, 17yoa

Re: New to the group

Welcome to this group. I think that you will enjoy it.

I am so glad that you know about your baby's CF already. It will

allow you to take good care of him right away. Many of us didn't

learn about CF until our children (or in my case grandchild) were

really sick. It's hard to know that things aren't the way you had

wished, but he will still be PERFECT! Congratulations! I am really

excited for you!

Gale

> Hi my name is Kristi. I'm due late nov with my first child. He has

> cf. I found out a couple of months ago. I learning as much as i can

> to prepare myself. I didn't know anything about before cf before

all

> this. It's alot to take in. So much to know. Any help for a soon to

> be new parent would be gladly appreciated.

August 20, 2003

Deb Thank you for writing to me. This is alot to take in. I do know I'm very

lucky to know my son has cf before he is even born. My ob in the first set

blood work test for cf. Alot of doctors do now. One out of ever 25 white

person is a carrier. I know nothing about cf nor did we know it ran in

either of our familys.When we found out we were both carriers I wanted to

know if my child had cf. I didn't want to wait and I wanted to perpare

myself cause I knew nothing about it. For that whole week of waiting I kept

telling myself he wasn't going to have it. I knew it was a one in four

chance.It's been hard. I feel helpless. I don't want him to have hard life.

We do know that he has both the most common gene. I was told that means hes

in the higher risk for more problems.I live in virginia beach.The doctors

have been great and our family too.

>From: gdattig5@...

>Reply-To: cfparents

>To: cfparents

>Subject: Re: New to the group

>Date: Wed, 20 Aug 2003 00:39:34 EDT

>

>In a message dated 8/19/2003 4:58:02 PM Central Daylight Time,

>tyler1401@... writes:

>

> > Kristi

>

>I am a Mom of three and two of them have CF we were not diagnosed until my

>oldest was 6 and my youngest was 1. It is GREAT that you are finding out so

>soon! That is the best thing for you child know as soon as you do. There is

>a lot

>of new advances in CF so don't be down in the dumps about this diagnoses I

>know that is hard to understand but of any disease in the world this one

>they are

>getting close to a cure. Our doctor told us when we were diagnosed he

>thought

>there would be one in the next 10 years and I am holding him to it he has 5

>more years to go! Have you found out what mutation you child is carrying?

>How

>did you know so soon? Where do you live? If you have any questions there

>are a

>lot of knowledgeable people on here that can help so ask away. Deb A

>

August 20, 2003

I hope so but knowing my lick it will be right as the whole family is

sitting down for thanksgiving dinner

>

>Reply-To: cfparents

>To: cfparents

>Subject: Re: New to the group

>Date: Wed, 20 Aug 2003 01:11:46 -0000

>

>We didn't know that we were carriers either. We are not aware of

>anyone with cf on either side. I didn't even know what cf was. Now,

>I tell everyone about cf. I want everyone to know what cf is, so

>that maybe they'll donate to a fund raiser or think twice before they

>light a cigarette.

>

>My grand daughter was diagnosed with cf at 3 months age. She is now

>19 months old. I think that she is the cutest, smartest baby ever.

>I've noticed that people with cf are exceptionally smart.

>

>We live in Ohio and my grand daughter, Abigail (Abby), lives about a

>mile away from us. I love having her so close. She's my only grand

>baby, so she gets a lot of attention.

>

>Will your son arrive in time for Thanksgiving?

>

>Gale

>

_________________________________________________________________

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August 20, 2003

My grand daughter also has two of the deltaF508 mutations. She is 19

months old and if I didn't tell you that she has CF, you'd never know

it. She is REALLY active, funny and cute. I wish that she had been

diagnosed prior to birth. She would probably never have gotten sick

then. I don't think that having two of this most common gene implies

a more difficult case. Alot depends on the care, the environment AND

the luck of the draw. I'm sure that Junior will do just fine!

Gale

> Deb Thank you for writing to me. This is alot to take in. I do know

I'm very

> lucky to know my son has cf before he is even born. My ob in the

first set

> blood work test for cf. Alot of doctors do now. One out of ever 25

white

> person is a carrier. I know nothing about cf nor did we know it ran

in

> either of our familys.When we found out we were both carriers I

wanted to

> know if my child had cf. I didn't want to wait and I wanted to

perpare

> myself cause I knew nothing about it. For that whole week of

waiting I kept

> telling myself he wasn't going to have it. I knew it was a one in

four

> chance.It's been hard. I feel helpless. I don't want him to have

hard life.

> We do know that he has both the most common gene. I was told that

means hes

> in the higher risk for more problems.I live in virginia beach.The

doctors

> have been great and our family too.

>

> >From: gdattig5@a...

> >Reply-To: cfparents

> >To: cfparents

> >Subject: Re: New to the group

> >Date: Wed, 20 Aug 2003 00:39:34 EDT

> >

> >In a message dated 8/19/2003 4:58:02 PM Central Daylight Time,

> >tyler1401@h... writes:

> >

> > > Kristi

> >

> >I am a Mom of three and two of them have CF we were not diagnosed

until my

> >oldest was 6 and my youngest was 1. It is GREAT that you are

finding out so

> >soon! That is the best thing for you child know as soon as you do.

There is

> >a lot

> >of new advances in CF so don't be down in the dumps about this

diagnoses I

> >know that is hard to understand but of any disease in the world

this one

> >they are

> >getting close to a cure. Our doctor told us when we were diagnosed

he

> >thought

> >there would be one in the next 10 years and I am holding him to it

he has 5

> >more years to go! Have you found out what mutation you child is

carrying?

> >How

> >did you know so soon? Where do you live? If you have any questions

there

> >are a

> >lot of knowledgeable people on here that can help so ask away. Deb

A

> >

August 20, 2003

At least all of the family would get to see him! You said that this

is your first baby. I was wondering how old you are. My daughter

(Abby's mom) is 27 years old. She was 25 when Abby was born.

I had my first baby (Abby's mom) at 16 years old (not a good idea)

and my second at 26 years old. I had my third (Nick) and last at 28

years old. My second child () was Trisomy 13 and only lived

one day. A " trisomy " is a major birth defect (3 copies of a

chromosone rather than 2 copies). His birth defect was not related

to CF. I heard once, that 12% of all babies have some birth defect.

As sad as Abby's CF diagnosis makes us feel, I know that it could be

much worse.

Abby's CF doctor also told us that a cure is within 10 years.

I'm glad that you joined this list.

Gale

> I hope so but knowing my lick it will be right as the whole family

is

> sitting down for thanksgiving dinner

August 20, 2003

My daughter also has two of the delta f508 mutations. She is almost 18

years old and is very active, extremely beautiful(I think), and has an

extremely funny sense of humor. She has been involved in dance(tap,ballet &

jazz) since she was 3years of age. She has danced in competition for the

last 8 years and has a whole shelf of blue ribbons and trophies. She is

also in drill/dance team the last 4 years in high school. She was a captain

on the team last year and choreographed several songs for their end of the

year show. She works part time as there is not any more time to fit in the

day. If you didn't know she had CF you would never know she was sick.

There are kids that she dances with and goes to school with that don't know.

The believe that all this activity and the fact that she loves to eat has

kept her so healthy. She also played the clarinet for three years. This

sure helps with pft's. So you see, they can lead a pretty normal life. On

those days that they don't feel well or are having some down days we thank

God for the other days. The importance is making sure that they take

medications and do their treatments. The longer they are healthy the better

the chance to see a cure.

Tina W mother of Steph wcf, age almost 18.

Re: New to the group

> >Date: Wed, 20 Aug 2003 00:39:34 EDT

> >

> >In a message dated 8/19/2003 4:58:02 PM Central Daylight Time,

> >tyler1401@h... writes:

> >

> > > Kristi

> >

> >I am a Mom of three and two of them have CF we were not diagnosed

until my

> >oldest was 6 and my youngest was 1. It is GREAT that you are

finding out so

> >soon! That is the best thing for you child know as soon as you do.

There is

> >a lot

> >of new advances in CF so don't be down in the dumps about this

diagnoses I

> >know that is hard to understand but of any disease in the world

this one

> >they are

> >getting close to a cure. Our doctor told us when we were diagnosed

he

> >thought

> >there would be one in the next 10 years and I am holding him to it

he has 5

> >more years to go! Have you found out what mutation you child is

carrying?

> >How

> >did you know so soon? Where do you live? If you have any questions

there

> >are a

> >lot of knowledgeable people on here that can help so ask away. Deb

A

> >

August 20, 2003

I'm 27 and jeff is 26.I really thing this group is going to be good for us.

>

>Reply-To: cfparents

>To: cfparents

>Subject: Re: New to the group

>Date: Wed, 20 Aug 2003 16:41:37 -0000

>

>At least all of the family would get to see him! You said that this

>is your first baby. I was wondering how old you are. My daughter

>(Abby's mom) is 27 years old. She was 25 when Abby was born.

>

>I had my first baby (Abby's mom) at 16 years old (not a good idea)

>and my second at 26 years old. I had my third (Nick) and last at 28

>years old. My second child () was Trisomy 13 and only lived

>one day. A " trisomy " is a major birth defect (3 copies of a

>chromosone rather than 2 copies). His birth defect was not related

>to CF. I heard once, that 12% of all babies have some birth defect.

>As sad as Abby's CF diagnosis makes us feel, I know that it could be

>much worse.

>

>Abby's CF doctor also told us that a cure is within 10 years.

>

>I'm glad that you joined this list.

>

>Gale

>

> > I hope so but knowing my lick it will be right as the whole family

>is

> > sitting down for thanksgiving dinner

>

_________________________________________________________________

MSN 8: Get 6 months for $9.95/month.

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August 20, 2003

No it was only 2 weeks. My (semi-anal) husband planned the whole thing,

including making motel/hotel reservations, we stayed in Yellowstone for 3

nights, and everywhere else 1, except SF we stayed 2 nights. Most days we

didn't drive too much, just the worst was from Idaho Falls to Bend Oregon,

including stopping off at the Craters of the Moon Natl Park in Idaho. We didn't

get into Bend until close to midnight. All the other days were not so

exhausting. My husband knows how to do these things, hes an engineer, does that

explain anything?

Love,

August 20, 2003

Hi Kristi,

As almost everyone has said already, it is incredibly fortunate that you

found out before he is born. Kate was diagnosed at two months, and I

was a wreck for that time period. Things were MUCH better after

diagnosis! She grew fat and rosy and happy (finally)! I've mulled it

over a little and here's some stuff I wish I had known at the beginning.

1) If you are considering breastfeeding, try it. Your docs may suggest

Pregestimil or some other predigested formula. But, I would ask them to

give it a try for a few weeks. I'm sure you've heard all the lectures

about the benefits of breastfeeding, so I will only point out that

breastfed babies tend to have fewer allergies. This will be incredibly

important later on in avoiding GI upset (food allergies) and lung

involvement (airborne allergies.) And you'll save lots of money! :-)

2) Get a copy of Orenstein's book Cystic Fibrosis: A Guide for

Patient and Family - I like this book because you can just read the

chapters you're needing at the time. The latest edition of this book is

coming out this November, so you may want to just borrow a copy until

the new one is available. Anyone else have a favorite CF book to

recommend?

3) Enzymes will most likely be prescribed for your baby. I fed these to

Kate in applesauce, but other acidic foods work too. Anybody have

favorites other than applesauce?

4) ADEK vitamins will almost certainly be prescribed for your infant.

Kate DID NOT like the liquid. She LOVES the chewables. If your baby

does not like the liquid, check with his doctors and see if you can

grind up the tablets and give as a powder. Note: As I found out AFTER

giving vitamins for a couple of months, vitamins should be taken with

enzymes.

5) Nebulized (inhaled) medications and CPT (chest physical or physio

therapy) were hard for me in the beginning. I was afraid of it being

really unpleasant for Kate. But, we just worked at it and gradually

moved from doing " blow-bys " to using a little mask. And CPT was really

clumsy and short at first, but then I found some videos that held Kate's

attention and was able to improve and extend the sessions. Now Kate

really enjoys treatment time - it's the only time she's allowed to watch

TV.

6) My husband just said, " Tell her about clinic; I'd never heard of

'clinic' before. " Once your baby is born, you'll take him to the

nearest CF Center (you can find all the centers near you at www.cff.org

<http://www.cff.org/> ) on a regular basis. Kate goes once every three

months, but it may be more frequent than that at first. At clinic, your

baby will be measured first (weight, length, oxygen saturation, blood

pressure, etc.) Then a nurse will talk to you about how things are

going with your baby - eating, pooping, sleeping, etc. You will also

have a chance to see the nutritionist, the social worker (problem

solvers extraordinaire), the respiratory therapist, and finally your

doctor(s). Our doctor is a pediatric pulmonologist, but we've also seen

a gastroenterologist. And one clinic we went to in Florida even had a

pharmaceutical specialist to monitor dosing of medication, drug

interactions, etc. Anyway, clinic takes a LONG time, and offers lots of

opportunities for your child to get restless. If you can, bring someone

with you to these appointments - husband, parent, friend, etc. You'll

want to pay attention to what these specialists are telling you, and

it's really difficult if your child is screaming in your ear or trying

to lick the floor!

OK, I'm stopping here. Looking over my rather lengthy reply, it seems

that I've focused on the extra things that need attention when you have

a child with CF. Like you said, it's overwhelming. However, you'll get

used to it gradually. Don't think you have to do everything

immediately. I started with enzymes first. Then I added vitamins.

Then I tried the nebulizer (a respiratory therapist will show you how to

work it.) And so on.

I hope this helps a little. Let us know how you're doing and what

you're thinking about.

Jane Lindrum

Mom of Kate, 4 wcf

New to the group

Hi my name is Kristi. I'm due late nov with my first child. He has

cf. I found out a couple of months ago. I learning as much as i can

to prepare myself. I didn't know anything about before cf before all

this. It's alot to take in. So much to know. Any help for a soon to

be new parent would be gladly appreciated.

August 20, 2003

Kristi, about the breastfeeding...if you want to breastfeed please try it. We

didn't know my son had cf until he was 4 months and I breastfed. Turns out he

is pancreatic sufficient and breastfeeding was fine. If I had known about the

cf when he was born, I may have listened the the " experts " who usually recommend

special formula and I wouldn't have had the pleasure of bf my boy. Some cf

children do fine on breast milk and some need a little extra help. I feel

strongly that breastfeeding for the first 18 months (along with other food) of

course) is one of the reasons my son has been so healthy.

Angie (Ma to JC, 3yo, wcf)

RE: New to the group