Introduction

[Guest guest]

You didn't leave your name so I'm not sure who I'm talking to.

I received the cook-book....Cooking Up Calories. It costs around 10.00

dollars and I think I got it from the Pittsburgh Cystic Fibrosis Center. If

anyone happens to know this phone # would you please print it for this lady?

from PA

[Guest guest]

Welcome to this group. I have a booklet with recipes etc. from babies to

preschoolers and older that was given to me from the hsp. when my daughter

was dx at 3 weeks of age. I could e-mail these if you would like. Just let

me know.

Mummy to Liam 7 wocf and

Eilish 4 wcf

Introduction

> I am a foster mother to a 10 month old boy with cf who my husband and

> I are hoping to adopt. He is doing well overall but has had

> pneumonia x3 since birth and is currently on Tobi and Augmentin in

> addition to his regular nembulizer treatments of Pulmicort with

> Albuterol BID. He is also on Pancrecarb MS-4 for his enzymes but has

> still had problems with wgt gain. Does anyone have suggestions for

> recipe books for high protein/fat recipies for this age group and/or

> suggestions for how to entertain a 10 month old for 2 nembulizer

> treatments twice daily? We have been fairly successful with Baby

> Einstein videos but he still gets bored. He is also fighting his CPT

> more and more as he gets older but so far we have still been managing

> to get it done. I am glad this group is available and look forward to

> networking with you.

>

>

>

> PLEASE do not post religious emails to the list.

>

>

> -------------------------------------------

>

>

> 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]

The CF Centers are the only ones that have them.It is aDCI sponsored

cookbook by Gail farmer. (she is with Kaiser Peremente clinics in CA. (5).

She has written several .I have one from 1986. " Fat & Loving it " It is

excellent book. right now she is doing one with Sanford that should be out

soon.

The one you have can be gotten from CF Centers only , as I understand it. I

had a form several issues back in my newsletter telling folks to go to

their centers Coor.'s or Dietians and ask them for it .

At that time it wasn't an item for sale.....Only so many were printed for

giveaways compliments of PANCRECARB(DCI).............

LOVE & HUGS, GRANDMOMBEV

Re: Introduction

You didn't leave your name so I'm not sure who I'm talking to.

I received the cook-book....Cooking Up Calories. It costs around 10.00

dollars and I think I got it from the Pittsburgh Cystic Fibrosis Center. If

anyone happens to know this phone # would you please print it for this lady?

from PA

PLEASE do not post religious emails to the list.

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

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]

Hello. What is your name? My name is Dawn and my husband and I have

adopted a sibling group of three from foster care, none with cf, and later

had another daughter with cf.

I have a bunch of questins to ask before I give advice...... What type of

formula is he on? Are you mixing the formula at higher concentrations to

give extra calories? If so, is he getting 24 calories per ounce or 27

calories per ounce? If he is getting the 27 and is stil not gaining weight

I have a smootie formula that I came up with when Patti was around 9 months

old and teething and wouldn't take a bottle. It is 1/2 cup vanilla hagendaz

(270 cal) 1/4 cup formulamixed to 27 cal/oz. (54 cal.) 1/4 cup yoplait

custard style yogurt, any flavor, (75-90 cal). Mix it all up in the

blender. the recipe makes a total of 8 oz. and it has aproximately 51

cal/oz. Patti loved them and would drink them out of a cup with a straw.

If you need information on how to increse the formula calories I will be

happy to tell you how to do that as well.

Dawn mom of 4, 6 and under, the youngest wcf

Introduction

> I am a foster mother to a 10 month old boy with cf who my husband and

> I are hoping to adopt. He is doing well overall but has had

> pneumonia x3 since birth and is currently on Tobi and Augmentin in

> addition to his regular nembulizer treatments of Pulmicort with

> Albuterol BID. He is also on Pancrecarb MS-4 for his enzymes but has

> still had problems with wgt gain. Does anyone have suggestions for

> recipe books for high protein/fat recipies for this age group and/or

> suggestions for how to entertain a 10 month old for 2 nembulizer

> treatments twice daily? We have been fairly successful with Baby

> Einstein videos but he still gets bored. He is also fighting his CPT

> more and more as he gets older but so far we have still been managing

> to get it done. I am glad this group is available and look forward to

> networking with you.

>

>

>

> PLEASE do not post religious emails to the list.

>

>

> -------------------------------------------

>

>

> 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, . It seems like you have already gotten some good responses, but I

thought I would add my two cents. I was surprised to read that you do not

have a doctor's appointment for three weeks. Is it a CF center? If not, I

would find one quick. My daughter had a positive sweat test on a Thursday,

saw her new CF doctor on Sunday and was in clinic starting treatment on

Tuesday. Three weeks seems excessive, especially for a new case. The sweat

test is the " gold standard " in CF testing. Once the test is positive, it

will always be positive. Was the test done at an experience lab? Again, if

not, find your local CF center and get the test done there. If however, it

was a Cf center, you can trust the results. The most important thing is to

get the correct diagnosis and treatment. I know that the test results were

shocking. I think many people on the list have felt the same way, I know I

did. Keep in touch and let us know what happens.

Stay strong,

Colleen

Mom to Elyse, 1 year w/ cf

ps. If you need to, go to www.cff.org for a list of centers. Good luck.

Introduction

I am in need of a lot of information.

This is all very new to me and I am not even sure that I agree with

the diagnosis.

My son is 2.5 and although I now understand that children and even

some adults can be diagnosed after infancy - I guess I just don't

understand why or how.

Again - I am relaly looking for info - there is so little out there

and to be honest I am looking for something to tell me they are wrong.

As I have said my son is 2.5 and up until now had been diagnosed and

been treated for growth hormone dificency and reactive airway

disease.

I don't think I can handle anything more right now. It took me 9

months to get the courage to agree to treatment for the GHD and to

give the injections and we are doing it and he is growing and it has

gotten easier but .......

sorry I am rambling but I haven't told anyone about this yet because

I still don't feel like it is official. We have only had one sweat

test and it just doesn't seam like that one test should be able to

diagnose an illness like this. So they have agreed to test again but

not until Feb 7!!! I swear they are trying to make me go crazy.

Ok deep breath ... I just read through a lot of the archives and

maybe he has a mild case if anything - he is on albuterol and

pulmicort inhalers and nebulizer treatments - has been since he was 9

months old - for RAD. He has recently been placed on agumentum and

will be for another 3 weeks for a bad sinus infection.

he has never had any digestive issues. his bm are fine. we have no

family history of this.

he was tested at 12 months for GHD because he had failed to grow - he

has always been 100% propotionate just extreamly short - fell off all

charts at 6 months. The GHT has helped a lot but we didn't start

until he was 18 months so he still has a lot of catch up ( not on the

charts yet).

he is not a perfectly healthy child but I would not concider him ill

or what I would think of a child would CF looks like. He is not thin -

does not taste like salt ( I don't know if that really works or

not), etc.

I am sure some of you have gone through what we are going through

now. I don't even know for sure if my DH and I are both carriers. I

guess I would think they would check that - right?

We don't even go for another doc appointment for 3 weeks -

I just don't understand all of this - are there any other parents

that had children diagnosed over the age of 2 years? If so what tests

did your child go through. No one has even told me what the next step

is - although I think I stopped listening at " it came back possitive. "

Any help is appreciated.

[Guest guest]

Hi there! Welcome to our group. I'm sure you will find it a great place for

support, information, and friendship. I am a foster mom as well, not had any

children with cf, but currently have a 15year old girl. Have you been a

foster parent for a long time or is this your first?

Again, glad to have you join!

Amy (mom to Skyler 4yr w/ocf, Tristan 20months w/cf, Cary 15yr w/ocf)

Introduction

I am a foster mother to a 10 month old boy with cf who my husband and

I are hoping to adopt. He is doing well overall but has had

pneumonia x3 since birth and is currently on Tobi and Augmentin in

addition to his regular nembulizer treatments of Pulmicort with

Albuterol BID. He is also on Pancrecarb MS-4 for his enzymes but has

still had problems with wgt gain. Does anyone have suggestions for

recipe books for high protein/fat recipies for this age group and/or

suggestions for how to entertain a 10 month old for 2 nembulizer

treatments twice daily? We have been fairly successful with Baby

Einstein videos but he still gets bored. He is also fighting his CPT

more and more as he gets older but so far we have still been managing

to get it done. I am glad this group is available and look forward to

networking with you.

[Guest guest]

I would love to see the recipes. Thanks for offering. Emma is not on solid

foods yet but I will file the recipes away

Jen, daughter Emma, 3 mos w/cf

[Guest guest]

> I am sorry for your diagnosis and denial is normal feeling.

We have two children with CF our 5 mth old was diagnosed through amniotsis

we did not have a clue that she would have anything wrong with her.

She has been in the hospitol three times since she was born and is taking a

lot of medication and breathing treatments. She looks the picture of health

and is cute as a button. The doctors said we might want to test her older

sisiter who is 2 yrs old. We did and her test came back positive we had the

blood test done on her. She has shown no signs or symptoms except her stools

were many and loose very rarely did she have hard stools but we did no that

was a symptom. She is a very healthy and thick girl who doesnt lok like she

missed a meal. She has never been in the hospitol and she only had a few ear

infections. So when her test came back positive it was a shock to us. There

must be several differnt levels of the disease and degrees of what it

affects. She is not salty tasting either. her sister is really salty

tasting. There has been no children with cf on either side of our families

until now.

Hope this helps you so bottom line is only the test can tell for sure.

and nna jade5mths and chyann 2yrold wcf

Introduction

> I am in need of a lot of information.

>

> This is all very new to me and I am not even sure that I agree with

> the diagnosis.

>

> My son is 2.5 and although I now understand that children and even

> some adults can be diagnosed after infancy - I guess I just don't

> understand why or how.

>

> Again - I am relaly looking for info - there is so little out there

> and to be honest I am looking for something to tell me they are wrong.

>

> As I have said my son is 2.5 and up until now had been diagnosed and

> been treated for growth hormone dificency and reactive airway

> disease.

>

> I don't think I can handle anything more right now. It took me 9

> months to get the courage to agree to treatment for the GHD and to

> give the injections and we are doing it and he is growing and it has

> gotten easier but .......

>

> sorry I am rambling but I haven't told anyone about this yet because

> I still don't feel like it is official. We have only had one sweat

> test and it just doesn't seam like that one test should be able to

> diagnose an illness like this. So they have agreed to test again but

> not until Feb 7!!! I swear they are trying to make me go crazy.

>

> Ok deep breath ... I just read through a lot of the archives and

> maybe he has a mild case if anything - he is on albuterol and

> pulmicort inhalers and nebulizer treatments - has been since he was 9

> months old - for RAD. He has recently been placed on agumentum and

> will be for another 3 weeks for a bad sinus infection.

>

> he has never had any digestive issues. his bm are fine. we have no

> family history of this.

>

> he was tested at 12 months for GHD because he had failed to grow - he

> has always been 100% propotionate just extreamly short - fell off all

> charts at 6 months. The GHT has helped a lot but we didn't start

> until he was 18 months so he still has a lot of catch up ( not on the

> charts yet).

>

> he is not a perfectly healthy child but I would not concider him ill

> or what I would think of a child would CF looks like. He is not thin -

> does not taste like salt ( I don't know if that really works or

> not), etc.

>

> I am sure some of you have gone through what we are going through

> now. I don't even know for sure if my DH and I are both carriers. I

> guess I would think they would check that - right?

>

> We don't even go for another doc appointment for 3 weeks -

>

> I just don't understand all of this - are there any other parents

> that had children diagnosed over the age of 2 years? If so what tests

> did your child go through. No one has even told me what the next step

> is - although I think I stopped listening at " it came back possitive. "

>

> Any help is appreciated.

>

>

>

>

>

> PLEASE do not post religious emails to the list.

>

>

> -------------------------------------------

>

>

> 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]

Yes, I will take you off of my address book. I'm new to this computer thing

and I didn't know a virus went out to address book. Earlier I had asked the

group if anyone minded me adding their name to my add. book and I think only

one responded. I'm sorry.

This message is for sueandjacques

from PA

[Guest guest]

,

I am new to this also and it probably was me that responded to you and said

that I didn;t mind but since then have learned that viruses can be spread

that way. I am probably over reacting....nothing new there.

Thanks

Mom to Elliot

11mths wcf

[Guest guest]

hi ,

sorry to hear of your diagnosis, it always starts with

the dreaded sweat test, and they may perform this

several more times, many of us probably denied this as

proof of CF, in the beginning, i know i did!!!

Especially when your child is not really unhealthy to

look at. i have been through the same with my twins

and they are still doing tests since April last

Year,when they were 7, you get used to it -really!!

This list will help you come to terms with the

diagnosis and provides a lot of support.

Talk more soon,

Love Nat, mum to Marc 10wo/cf, Jake & Jordan 8 w/cf

and Dee-anna 5 wo/cf

--- lrojasmsi lrojascms@...> wrote: > I am in

need of a lot of information.

>

> This is all very new to me and I am not even sure

> that I agree with

> the diagnosis.

>

> My son is 2.5 and although I now understand that

> children and even

> some adults can be diagnosed after infancy - I

> guess I just don't

> understand why or how.

>

> Again - I am relaly looking for info - there is so

> little out there

> and to be honest I am looking for something to tell

> me they are wrong.

>

> As I have said my son is 2.5 and up until now had

> been diagnosed and

> been treated for growth hormone dificency and

> reactive airway

> disease.

>

> I don't think I can handle anything more right now.

> It took me 9

> months to get the courage to agree to treatment for

> the GHD and to

> give the injections and we are doing it and he is

> growing and it has

> gotten easier but .......

>

> sorry I am rambling but I haven't told anyone about

> this yet because

> I still don't feel like it is official. We have only

> had one sweat

> test and it just doesn't seam like that one test

> should be able to

> diagnose an illness like this. So they have agreed

> to test again but

> not until Feb 7!!! I swear they are trying to make

> me go crazy.

>

> Ok deep breath ... I just read through a lot of the

> archives and

> maybe he has a mild case if anything - he is on

> albuterol and

> pulmicort inhalers and nebulizer treatments - has

> been since he was 9

> months old - for RAD. He has recently been placed on

> agumentum and

> will be for another 3 weeks for a bad sinus

> infection.

>

> he has never had any digestive issues. his bm are

> fine. we have no

> family history of this.

>

> he was tested at 12 months for GHD because he had

> failed to grow - he

> has always been 100% propotionate just extreamly

> short - fell off all

> charts at 6 months. The GHT has helped a lot but we

> didn't start

> until he was 18 months so he still has a lot of

> catch up ( not on the

> charts yet).

>

> he is not a perfectly healthy child but I would not

> concider him ill

> or what I would think of a child would CF looks

> like. He is not thin -

> does not taste like salt ( I don't know if that

> really works or

> not), etc.

>

> I am sure some of you have gone through what we are

> going through

> now. I don't even know for sure if my DH and I are

> both carriers. I

> guess I would think they would check that - right?

>

> We don't even go for another doc appointment for 3

> weeks -

>

> I just don't understand all of this - are there any

> other parents

> that had children diagnosed over the age of 2 years?

> If so what tests

> did your child go through. No one has even told me

> what the next step

> is - although I think I stopped listening at " it

> came back possitive. "

>

> Any help is appreciated.

>

>

>

>

>

[Guest guest]

Where are you? It really does not seem right that they make you

wait so long. do they realize how stressed that you are?

perhaps you should call your pediatrician and let him know how

stressed you are and ask him to step in.

What about considering this?

for example, had his first sweat test on Dec 17 and the

lab set the next one u p for the next day, and the lab tech told us

they always work in positives because of the stress for the

families. (because we knew already they were booked up for

over a mo n th for sweat tests). Also, when our pediatrician tried

to get us in for a first appt with the cf doc, apparently they were

really booked b/c of the holidays and they saw us on christmas

Eve, to this day I still believe that we were dealing with a bunch of

people who didn't want to leave us stressed over the holidays,

and I will always be grateful. cf docs are some of the kindest

docs around, and they certainly care about their kids. (of course,

there are bad ones out there too, that is why I asked where you

are. like anything,t here are cocky ones or ones who are more

into their own accomplishments than their patients health, but

our experiences have all been positive.

good luck

Jen, mommy of 7, 3 with CF > I am in

> need of a lot of information.

> >

> > This is all very new to me and I am not even sure

> > that I agree with

> > the diagnosis.

> >

> > My son is 2.5 and although I now understand that

> > children and even

> > some adults can be diagnosed after infancy - I

> > guess I just don't

> > understand why or how.

> >

> > Again - I am relaly looking for info - there is so

> > little out there

> > and to be honest I am looking for something to tell

> > me they are wrong.

> >

> > As I have said my son is 2.5 and up until now had

> > been diagnosed and

> > been treated for growth hormone dificency and

> > reactive airway

> > disease.

> >

> > I don't think I can handle anything more right now.

> > It took me 9

> > months to get the courage to agree to treatment for

> > the GHD and to

> > give the injections and we are doing it and he is

> > growing and it has

> > gotten easier but .......

> >

> > sorry I am rambling but I haven't told anyone about

> > this yet because

> > I still don't feel like it is official. We have only

> > had one sweat

> > test and it just doesn't seam like that one test

> > should be able to

> > diagnose an illness like this. So they have agreed

> > to test again but

> > not until Feb 7!!! I swear they are trying to make

> > me go crazy.

> >

> > Ok deep breath ... I just read through a lot of the

> > archives and

> > maybe he has a mild case if anything - he is on

> > albuterol and

> > pulmicort inhalers and nebulizer treatments - has

> > been since he was 9

> > months old - for RAD. He has recently been placed on

> > agumentum and

> > will be for another 3 weeks for a bad sinus

> > infection.

> >

> > he has never had any digestive issues. his bm are

> > fine. we have no

> > family history of this.

> >

> > he was tested at 12 months for GHD because he had

> > failed to grow - he

> > has always been 100% propotionate just extreamly

> > short - fell off all

> > charts at 6 months. The GHT has helped a lot but we

> > didn't start

> > until he was 18 months so he still has a lot of

> > catch up ( not on the

> > charts yet).

> >

> > he is not a perfectly healthy child but I would not

> > concider him ill

> > or what I would think of a child would CF looks

> > like. He is not thin -

> > does not taste like salt ( I don't know if that

> > really works or

> > not), etc.

> >

> > I am sure some of you have gone through what we are

> > going through

> > now. I don't even know for sure if my DH and I are

> > both carriers. I

> > guess I would think they would check that - right?

> >

> > We don't even go for another doc appointment for 3

> > weeks -

> >

> > I just don't understand all of this - are there any

> > other parents

> > that had children diagnosed over the age of 2 years?

> > If so what tests

> > did your child go through. No one has even told me

> > what the next step

> > is - although I think I stopped listening at " it

> > came back possitive. "

> >

> > Any help is appreciated.

> >

> >

> >

> >

> >

[Guest guest]

..it's quite overwhelming ..there are as you have already found out many

children that have been diagnosed later in life.

I hope you find the support you need here during this trying time..

Stein..mom to CF (20 mo) & Tori wo/CF in Mass

Introduction

I am in need of a lot of information.

This is all very new to me and I am not even sure that I agree with

the diagnosis.

My son is 2.5 and although I now understand that children and even

some adults can be diagnosed after infancy - I guess I just don't

understand why or how.

Again - I am relaly looking for info - there is so little out there

and to be honest I am looking for something to tell me they are wrong.

As I have said my son is 2.5 and up until now had been diagnosed and

been treated for growth hormone dificency and reactive airway

disease.

I don't think I can handle anything more right now. It took me 9

months to get the courage to agree to treatment for the GHD and to

give the injections and we are doing it and he is growing and it has

gotten easier but .......

sorry I am rambling but I haven't told anyone about this yet because

I still don't feel like it is official. We have only had one sweat

test and it just doesn't seam like that one test should be able to

diagnose an illness like this. So they have agreed to test again but

not until Feb 7!!! I swear they are trying to make me go crazy.

Ok deep breath ... I just read through a lot of the archives and

maybe he has a mild case if anything - he is on albuterol and

pulmicort inhalers and nebulizer treatments - has been since he was 9

months old - for RAD. He has recently been placed on agumentum and

will be for another 3 weeks for a bad sinus infection.

he has never had any digestive issues. his bm are fine. we have no

family history of this.

he was tested at 12 months for GHD because he had failed to grow - he

has always been 100% propotionate just extreamly short - fell off all

charts at 6 months. The GHT has helped a lot but we didn't start

until he was 18 months so he still has a lot of catch up ( not on the

charts yet).

he is not a perfectly healthy child but I would not concider him ill

or what I would think of a child would CF looks like. He is not thin -

does not taste like salt ( I don't know if that really works or

not), etc.

I am sure some of you have gone through what we are going through

now. I don't even know for sure if my DH and I are both carriers. I

guess I would think they would check that - right?

We don't even go for another doc appointment for 3 weeks -

I just don't understand all of this - are there any other parents

that had children diagnosed over the age of 2 years? If so what tests

did your child go through. No one has even told me what the next step

is - although I think I stopped listening at " it came back possitive. "

Any help is appreciated.

[Guest guest]

Name:Annette

Age: 37

What year was your tubal ligation? 1993, I had the tubal because it

was the " socially conscious " thing to do. I didn't want

to " overpopulate " the world, or at least that's what everyone told

me I should do. I was weak back then, I listened and didn't make the

choice on my own.

What state do you live in? Connecticut

Where are you in the reversal process?

I have had a histogram(?) performed and received my medical records

from the tl. I have been looking for information to see if it is

possible to have the procedure done, finding the right doctor and

worried about taking the leap, sending the info and having a doctor

tell me that it can't be reversed.

If you have had your reversal, which doctor did your surgery? If you

have not, which doctor do you plan to use?

I am still nervous about choosing and also about cost. It is a great

deal of money to spend for only the " possibility " of another child.

I want to be sure that I choose a doctor that has a lot of

experience and a high success rate. But I have wanted another child,

or several, so much, and for so long.

Tell us a little about yourself, such as your interests and/or

hobbies:

I am a soap/toiletries maker who has a wonderful husband, two

beautiful teenagers and three cats that have seen fit to adopt us as

their own, lol. I knit, crochet, read, sew, garden and bake for fun.

We plan on moving to a bigger piece of land if all goes well, so

that we can continue to grow an organic garden and maybe get a few

more animals.

Hope this isn't too much information.

Annette