getting started

[Guest guest]

Welcome, Lori. Sounds like life is a little tough and frustrating right

now...we have all been there, and it's not easy. To top it off, you are

expecting another baby soon, and know how much busier you will be after

that. This is a great group, with a fantastic bunch of people from every

walk of life, and all around the globe. We have fun talking about

everything and anything, and we are there for each other when life gets

tough. You have joined a great group, and you will get lots of answers and

support here.

Where are you from, if you don't mind me asking? We live in Fargo, ND, and

there are a lot of Grothes here.

Best of luck to you, and we look forward to getting to know you better!

S., mom to Cody (7, pwcf, nissen for severe reflux, malnutrition,

ADHD), DJ (9, nocf, asthma, ADD), and a (14, nocf, ADHD)

Getting started

> Hello everyone,

> I am a 25 year old mother of 3, *The 3rd is due in 4 weeks* My oldest,

is 3 1/2. She was diagnosed with CF in May of this year. She has

been really good about her treatments and all the changes that have taken

place lately. , who is 2 is full of questions about why Emi is sick and

he is not. I think he is getting a good idea though. I honestly think that

myself and the other adults in her life are having a harder time of it.

Which I guess is to be expected. Her father and I are no longer together.

He isn't taking an active role in learning about her CF. He does the

treatments when he has them. For the most part though he chooses to ignore

it. I see it affecting in a negative way and am not sure how to react

to it. I don't want her to feel different from her brother, or other

children around her. Yet I want her to understand the importance of her

treatments and why she needs them. Sometimes I feel strong and in

" control " , if thats what you want to call

> it. Other times I feel like I could fall apart at the seams. I decided

to stay at home and take care of her. She currently gets 3 CPT a day, and I

feel better knowing I am the one to do them. Not that someone else isn't

capable....but just for my own peace of mind. I guess I am looking for

answers to the questions that can't really be answered. lol Ironic huh.

Anyone with any suggestions or really anything to say at all would be

refreshing. Just looking to talk to other people who can empathize, without

sympathy.

>

> Thanks,

> Lori (mother of 3 yr old with cf)

[Guest guest]

How smart!!!

Gale

> Rather than dwelling on CF as an illness, I have always pointed out

to my

> children, with and without CF, that everyone needs to know their

body and

> take care of their own special needs. I use examples, for instance,

their

> cousin has to make sure she carries an EpiPen everywhere she goes

(analgous

> to carrying enzymes everywhere) and be VERY careful about what she

eats as

> some foods could kill her. Other children might need insulin shots

> regularly. Some might struggle with reading and have to take extra

long to

> get homework done even if they seem very smart. It is useful to

point out

> that we don't always know what others need to do to keep as healthy

as they

> can so we shouldn't make assumptions about people's halth or luck.

Even

> those who are healthy now likely will have times in their lives

when they

> have extra needs. While I tell my son with CF that he needs to be

concerned

> about taking extra salt and calories, I tell my other children that

they

> need to be careful they don't use too much salt and that they have

important

> nutritional needs to be aware of as well -- just that they are

different for

> different people.

>

> Maybe similiar explanations will be useful for to understand

that both

> he and Emi have things they have to do to keep their bodies as

healthy as

> possible-- some of the things will be different ... some, like

exercise and

> good nutrition, will be the same.

>

> M

[Guest guest]

In a message dated 9/8/2003 2:20:59 PM Central Daylight Time,

entnursenikki@... writes:

>

CONGRATULATION!!!! I AM VERY VERY HAPPY FOR YOU!!!! DEB A

[Guest guest]

Hi ,

Congratulations! I hope this pregnancy is joyous for you. I can

relate about the doom and gloom pregnancy. Having Zach was

difficult and then he was premature. I can totally understand your

need for people to be happy about this. I am sure Madeline will be

a great big sister.

Sara - mommy to Zach 19 months wcf

With Madeline, we had complications then the diagnosis and I feel

like that time of my life that should have been so joyous was doom

and gloom, I just pray people can be happy for us if we truly are

having a new baby, cf or no cf. We didn't plan on this, but it has

happened none the less. Thanks for listening, I guess I can feel

like I can tell you guys these things because we have a common bond

and are not as judgemental as

> other people are to us.

> Thanks,

> Mom to Madeline 1.5 wcf, may have a brother or sister in 9

months!!

>

[Guest guest]

In a message dated 9/8/2003 2:49:12 PM Central Daylight Time, bevd@...

writes:

> 129 years ago????????

[Guest guest]

,

I know what you mean about scary to try again after you already

have one with cf. My husband wants to try one more time for a girl we

have two boys. I just do not think that I am willing to take that

chance. I didn't know that there was the posibility to have even one

with cf but now that I know the odds it just seems unfair to chance it.

Just my opinion though. I don't want to offend anyone out there at all

ok.

Unfortunately I am afraid that this may come between my hubby

and me. He just does not see my reasoning. I guess that only time will

tell on that part though. And personally I think that 2 for me is just

enough ughhhh sometimes tooooo much. LOL

You and your family will make the right decision though for yourselves.

Good luck if that time comes for the two of you.

Ashauna

[Guest guest]

,

Well I guess count my other message wishing you both luck as

good as gold. I think that you both need to be happy. No you did not

plan to get pregnant but you can still be happy either way. I hope that

you will find that you have support from your family either way as well.

Isn't it hard we love our children so much even though they

have this disease and no matter what happens we never regret having

them. You need to take this with you during your next journey into baby

land and remember that he or she is just going to be your little angel w

or w/o cf. I wish you both the best of everything and we will all pray

for a happy and healthy pregnancy for you and a happy healthy baby. You

just try and enjoy this time.

Love to you and your family

Ashauna

[Guest guest]

I also sent a correction within seconds of hitting the key .....sorry. it

was 19 years. ...But 129 is really a great life time:):)hehehehe

LOVEYA

Grandmombev

Re: Getting started

In a message dated 9/8/2003 2:49:12 PM Central Daylight Time, bevd@...

writes:

> 129 years ago????????

[Guest guest]

In a message dated 9/9/2003 9:48:41 AM Central Daylight Time,

woosley@... writes:

> Girls are wonderful! I have two.

I have three!!!!!! And my husband is grey haired and frazzled LOL!!!! And so

am I!!!!! AUGGGGGGG!!! Deb A

[Guest guest]

,

Can you check with the doctors to find out how quickly a newborn

could be tested for cf? If it is fairly quickly, then you could

just find out after the baby is born. If not, find out how they

treat a baby who might have cf until it is tested. It may not be

medically necessary to know beforehand. Someone else might know for

sure. I can totally understand not wanting to go through an

additional procedure while you are pregnant.

Sara -

> Thanks Gale,

> I am getting excited, a little nervous too. We have been trying

to decide if we want to know if it has cf before it is born. If an

amnio is the only way, my husband says absolutely not unless it is

medically necessary for the health of the baby. Does anyone know

any other ways you can tell if your baby has cf while in utero??

> PS- Thanks for all the well wishes, I really need and appreciate

them.

>

>

[Guest guest]

,

I would tell you not to get the amnio also. Only because I really

had a bad experience with it. It hurt so bad. They stick a needle into

your stomach that is like this long

___________________________________

It really is like that long and very big. Ughhhh I passed out from it

and had severe stomach craps for like 3 days. Also you really have to

take it easy after that because it can induce labor. I was terified to

have it done but I had no choice really we had to try to narrow down

what Colgan had. The only thing with ours was that we could not test to

see if he had cf because I came up negative as a carrier. Obviously not

so since he has cf. You know I wonder what they do different if you do

find out baby has CF in utero anyways perhaps it will be safer to wait

until after born. I don't know. I do know though that the amnio is

really ugly.

Ashauna

[Guest guest]

I had an amnio with Cody, but not until the day before he was born. I was

having a lot of problems, and had been on bed rest for about 6 weeks, and

since I had severe polyhydramnios, I was getting big so fast that my stomach

skin began to tear, so they wanted to make sure his lungs were mature enough

to let labor begin. I remember it hurting somewhat, but it maybe didn't

hurt me as much because of how large and full of fluid I was. All I know is

that I was happy to know he would be out soon! That is when they first

discovered the blockage in his intestine, though.

Ashauna--you say you had no choice because they needed to " narrow it

down " --were you having problems?

S., mom to Cody (7, pwcf, nissen for severe reflux, malnutrition,

ADHD), DJ (9, nocf, asthma, ADD), and a (14, nocf, ADHD)

Re: Re: Getting started

> ,

> I would tell you not to get the amnio also. Only because I really

> had a bad experience with it. It hurt so bad. They stick a needle into

> your stomach that is like this long

> ___________________________________

> It really is like that long and very big. Ughhhh I passed out from it

> and had severe stomach craps for like 3 days. Also you really have to

> take it easy after that because it can induce labor. I was terified to

> have it done but I had no choice really we had to try to narrow down

> what Colgan had. The only thing with ours was that we could not test to

> see if he had cf because I came up negative as a carrier. Obviously not

> so since he has cf. You know I wonder what they do different if you do

> find out baby has CF in utero anyways perhaps it will be safer to wait

> until after born. I don't know. I do know though that the amnio is

> really ugly.

> Ashauna

[Guest guest]

Keep an eye out for meconium ileus problems is very good advice. I

can't remember if Madeline had one or not. They should be able to

monitor this with sonograms I think.

Sara

> ,

> There is also a test called CVS. They can actually do this

earlier than an amnio and there is no needle in your belly. But I

think it has a slightly higher risk of miscarriage than an amnio.

The one reason that it would be important to do testing to find out

if the child has CF is to know if you have to keep an eye out for

meconium illeus problems.

> CONGRATULATIONS!

>

>

> Re: Getting started

>

>

> ,

> Can you check with the doctors to find out how quickly a newborn

> could be tested for cf? If it is fairly quickly, then you could

> just find out after the baby is born. If not, find out how they

> treat a baby who might have cf until it is tested. It may not be

> medically necessary to know beforehand. Someone else might know

for

> sure. I can totally understand not wanting to go through an

> additional procedure while you are pregnant.

> Sara -

>

[Guest guest]

Yes these kids truely are miracles. Both of my boys have been

quite the challenge when it came to being pregnant with them. My first

one had coroidal cysts in his brain. This was another miracle of

healing as well.

I will give him a hug for you. I love to give him hugs. (hug) I hope

that your kids are doing great. How is you son DJ doing? I am sorry to

hear about Cody's new culture. I hope that you are able to get rid of

it fast.

Love always,

Ashauna

[Guest guest]

hey there you two...I want to give those miracles all big HUGS too!!

I really give good big hugs to folks--especially kiddo's .They are my

specialty:):)hehe. Isn't their love so wonderful ?? That is such a

iracle -having children...........

I know you good mommy's & daddy's out there, will each go and give them all

big hugs tonight & give thanks that you have them & they are all well on

this 9/11 anniversary...... We are blessed to be with them now.

My heart goes out to those in our memories.......I don't mean to be sad, but

I do cherish each & everyone of you on this list, as we all reach out to

help each other...............

So, I am sending precious wishes to each of you for health & happiness &

being together.

LOVE , HUGS, WISHES

GrandmoMBEV

Re: Re: Getting started

Yes these kids truely are miracles. Both of my boys have been

quite the challenge when it came to being pregnant with them. My first

one had coroidal cysts in his brain. This was another miracle of

healing as well.

I will give him a hug for you. I love to give him hugs. (hug) I hope

that your kids are doing great. How is you son DJ doing? I am sorry to

hear about Cody's new culture. I hope that you are able to get rid of

it fast.

Love always,

Ashauna

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

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]

Sara,

yes they can. Also my son had meconium peritinitis. This is when

the intestine actually ruptures into the abdominal cavity. This can

cause a lot of infection as well as require surgery as soon as born to

fix the rupture point. This was a really rough time for us as well as

my son. He almost did not make it

I guess that this should be going to sorry about that Sara I was

just wondering if you thought that you were pregnant also but then

realized that you were replying to her UGhhhh it has been a long day.

Ashauna

[Guest guest]

Bev,

You have been wonderful through all of this getting used to the

list now I do not know what I would do if I did not have all of you to

end my sometimes overwhelming days with. I am so greatful to have met

all of you. Bev, you really are a blessing to know. The little that I

do know about you is so nice.

Ashauna

[Guest guest]

I am sooooo happy that your feeling so good about the lists I do too. Always

know we are all here for each other. Thanks you for your very sweet & kind

words to me. I don't deserve that ,BUT I do appreciate them,- & try to

always be mindful of everyone's needs. Your a blessing to us as well. Again,

thank you & ENJOY.........

LOVE & HUGS,

GRANDMOMBEV

RE: Re: Getting started

Bev,

You have been wonderful through all of this getting used to the

list now I do not know what I would do if I did not have all of you to

end my sometimes overwhelming days with. I am so greatful to have met

all of you. Bev, you really are a blessing to know. The little that I

do know about you is so nice.

Ashauna

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

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]

No problem. I am definately not pregnant and will never be again.

I think it is great if people choose to have more kids. If they are

happy, then why should I care? It is just not the right decision

for me.

Sara

> Sara,

> yes they can. Also my son had meconium peritinitis. This

is when

> the intestine actually ruptures into the abdominal cavity. This

can

> cause a lot of infection as well as require surgery as soon as

born to

> fix the rupture point. This was a really rough time for us as

well as

> my son. He almost did not make it

> I guess that this should be going to sorry about that Sara

I was

> just wondering if you thought that you were pregnant also but then

> realized that you were replying to her UGhhhh it has been a long

day.

> Ashauna

[Guest guest]

Sara I understand your side. I feel the same, but I am so happy for

those who are going to have another baby

Ashauna

[Guest guest]

Hello

I have a 4 1/2 year old son with autism and we are just getting

started on this adventure. He has severe intestional issues and I

feel this is the best method for helping him. I just ordered

the " Vicious Cycle " book this morning. I found some info on starting

the diet (basic diet menu) online. My question is, can anybody give

me specifics on what my son can eat for meals as well as snacks when

starting this diet while waiting for the book to arrive? He has

severe diarreah.

Thanks

Cindy

[Guest guest]

Cindy,

Go read as much as you can at the website, www.pecanbread.com . Read through

every section. It should give you some basic ideas... but we really highly

recommend you do not start the diet without reading the book. If you look up

Breaking the Vicious Cycle (BTVC) on Amazon.com, you can actually read the first

couple of chapters right there, which will give you a jump start. When the book

comes, it is a quick read.... the last half of the book is all recipes. But you

DO need a thorough understanding of the science behind the diet before jumping

in.

Patti, mom to Katera

getting started

Hello

I have a 4 1/2 year old son with autism and we are just getting

started on this adventure. He has severe intestional issues and I

feel this is the best method for helping him. I just ordered

the " Vicious Cycle " book this morning. I found some info on starting

the diet (basic diet menu) online. My question is, can anybody give

me specifics on what my son can eat for meals as well as snacks when

starting this diet while waiting for the book to arrive? He has

severe diarreah.

Thanks

Cindy

[Guest guest]

Patti,

Thank you so much for the advice. I was pretty much under this

impression of waiting for the book. I have been searching both of

the websites that you recommended and I have found some recipes that

look really good. We are pretty much already casein free and corn

free, working on eliminating the gluten as well. I am looking

forward to receiving the book and getting started on some improved

health for my son.

Thanks again,

Cindy, mom of Kasam

>

> Cindy,

>

> Go read as much as you can at the website, www.pecanbread.com .

Read through every section. It should give you some basic ideas...

but we really highly recommend you do not start the diet without

reading the book. If you look up Breaking the Vicious Cycle (BTVC)

on Amazon.com, you can actually read the first couple of chapters

right there, which will give you a jump start. When the book comes,

it is a quick read.... the last half of the book is all recipes. But

you DO need a thorough understanding of the science behind the diet

before jumping in.

>

> Patti, mom to Katera

> getting started

>

>

> Hello

>

> I have a 4 1/2 year old son with autism and we are just getting

> started on this adventure. He has severe intestional issues and

I

> feel this is the best method for helping him. I just ordered

> the " Vicious Cycle " book this morning. I found some info on

starting

> the diet (basic diet menu) online. My question is, can anybody

give

> me specifics on what my son can eat for meals as well as snacks

when

> starting this diet while waiting for the book to arrive? He has

> severe diarreah.

> Thanks

> Cindy

>

>

>

>

>

>