Re: Amnio update

[Guest guest]

,

Does this mean the baby doesn't have CF? i hope your feeling well and

all goes well.

(Australia)

Amnio update

Hi All,

I just wanted you all to know that the amnio went ok. it was a bit

scary but it seems that everything is alright. I had some moderate

cramping, as expected, but it wasn't as bad as I thought it would be.

The ultrasound that they did before they did the test was fine and they

said that they think it might be a boy, but we will know for sure when

the results come back in about 2 weeks. Now, I only have to watch for

fever or signs of infection for the next few days. If nothing happens

then all is well.

[Guest guest]

No. We won't know until the results come in in about 2 weeks. keep hoping for

us!

Amnio update

Hi All,

I just wanted you all to know that the amnio went ok. it was a bit

scary but it seems that everything is alright. I had some moderate

cramping, as expected, but it wasn't as bad as I thought it would be.

The ultrasound that they did before they did the test was fine and they

said that they think it might be a boy, but we will know for sure when

the results come back in about 2 weeks. Now, I only have to watch for

fever or signs of infection for the next few days. If nothing happens

then all is well.

[Guest guest]

Hoping hard, n

Amnio update

Hi All,

I just wanted you all to know that the amnio went ok. it was a bit

scary but it seems that everything is alright. I had some moderate

cramping, as expected, but it wasn't as bad as I thought it would be.

The ultrasound that they did before they did the test was fine and they

said that they think it might be a boy, but we will know for sure when

the results come back in about 2 weeks. Now, I only have to watch for

fever or signs of infection for the next few days. If nothing happens

then all is well.

[Guest guest]

So glad that you and that boy are o.k. Now take care of yourselves, all of

you! Love, n Rojas

Amnio update

Hi All,

I just wanted you all to know that the amnio went ok. it was a bit scary but

it seems that everything is alright. I had some moderate cramping, as expected,

but it wasn't as bad as I thought it would be. The ultrasound that they did

before they did the test was fine and they said that they think it might be a

boy, but we will know for sure when the results come back in about 2 weeks.

Now, I only have to watch for fever or signs of infection for the next few days.

If nothing happens then all is well.

[Guest guest]

That goes without saying!!

Love,

Jill

Re: Amnio update

No. We won't know until the results come in in about 2 weeks. keep hoping

for us!

[Guest guest]

Dear ,

I feel for you, it must be really frustrating waiting. We'll be doing the

waiting after the baby is born and I am sure I will go out of my mind

watching the baby like a hawk. I hope that they will be able to do the

testing quickly. They have promised that they will but you know what they

are like.

I've had such a difficult time with pregnancies in the past the doctors felt

it might be risky to have an amino and I couldn't bear the thought of having

a termination. So we're just sitting it out. I'm trying really hard not to

think about it too much as I can't do anything about it but I am worried and

I am worried that if it does have CF if might be more sick than Jack who has

been fairly well so far or that Jack will get sick when I have the new baby

or I have to go sit it out in the hospital at the end like I did last time.

So much to worry about..

When Jack was diagnosed with CF my sister was expecting twins and she got

tested herself to find out that she was a carrier that took 3 weeks and then

another 2 more weeks to find out that her partner is not a carrier. But the

wait went on forever and she was already apprehensive about having twins.

Thankfully they are OK

Hang in there

thinking of you

Fiona

mo Jack 13 mths wcf and 23 weeks pregnant

>

>Reply-To: cfparents

>To: " CF Parents " <cfparents >, " CysticFibrosis2Chat "

>, " TeamJane "

>

>Subject: Amnio update

>Date: Tue, 17 Feb 2004 18:24:41 -0500

>

>Hi All,

>Well here is the update on my amnio......... No CF results yet! I am so

>very frustrated as I was told 2 weeks and I have just hit three weeks

>without hearing about the CF. Then, today, I got a call from the genetic

>counselor saying that the " mouthwash " thing that they did to get 's

>DNA to compare with the baby's didn't work! They couldn't get enough cells

>or something......So now I have to drag her back for a blood draw on

>Thursday. I am very lucky that she is pretty good about having her blood

>drawn. Anyway, I really do not get why they even need her DNA since we

>know the mutations. they said something about new technology and the test

>is being done differently now so they need to compare either or

>against the baby to make sure that they are still able to find the mutation

>in . Insurance is not interested in being tested so the genzyme

>company say they will do for free.

>

>the way it was explained to me it sounded like maybe the baby carries my

>mutation but they can't find the other one, (but this is just my guesswork

>and I could be totally off the mark) and they do not want to give us a

>false " carrier only " report until they make the comparison. (or maybe that

>is just wishful thinking.......)

>

>Anyway, I am guessing that we are looking at yet another week without

>knowing. This is starting to drive me nuts!

>any input or advise?

>

>

>

>

>

[Guest guest]

Roxxe - I am not sure I am understanding your explanation of the genetics

correctly but I just want to clarify.

The CF gene is carried on chromosome 7 and is NOT sex-linked.

My SON has CF - he received one mutation from me and one from my husband. My

husband does not have CF.

All babies born with CF have a mutation from each parent. Therefore, all

boys born with CF have received a mutation from their male parent as well as

the female parent. Until recently, most males with CF could not father

biological children and so most fathers of boys with CF do NOT have CF

themselves.

M

Re: Amnio update

....

> My reasoning for asking is this - If your husband does not have CF then

he carries the CF gene on the X chromosome (father determines the sex so X=

girl and y=boy). So if the baby is a boy it would not be possible for him

to have obtained the CF gene from his father - so he could not have CF.

>

> Just Thinking Out Loud,

> Roxxe

[Guest guest]

Hi ,

Reading your post brought back so many memories!!! I had an amnio to

find out whether my daughter would have CF or not too. Actually I had

to have two. After the first one, they told me we would have the

results in 3-5 weeks. Once week 5 came we got a call saying our sample

had been contaminated (maternal cell contamination is what they called

it). Anyway, I had to go back in for another amnio. It took another 3

weeks before we got our results. I remember thinking the same thing you

did ... maybe they just found my mutation and could not find my

husbands. In my case it was just wishful thinking but there is nothing

wrong with that! Hey, whatever gets you through this. I know the

anxiety, stress and frustration you are feeling. We just wanted to KNOW

so we could get on with the pregnancy. The waiting was the hardest

part. I wish I had some great insight to help you get through this.

All I can say is stay positive, keep busy/distracted and pamper yourself

as much as possible. I went for more pedicures and massages in those 2

months than I had in my entire life. You are not going to change the

outcome or amount of time it will take to get the news by stressing over

it. I told myself that daily! I'll be sending you positive thoughts

and I hope this is all over soon.

Mom to Ellie 15mo wCF and Jack 3 1/2yrs noCF

Amnio update

Hi All,

Well here is the update on my amnio......... No CF results yet! I am

so very frustrated as I was told 2 weeks and I have just hit three weeks

without hearing about the CF. Then, today, I got a call from the

genetic counselor saying that the " mouthwash " thing that they did to get

's DNA to compare with the baby's didn't work! They couldn't get

enough cells or something......So now I have to drag her back for a

blood draw on Thursday. I am very lucky that she is pretty good about

having her blood drawn. Anyway, I really do not get why they even need

her DNA since we know the mutations. they said something about new

technology and the test is being done differently now so they need to

compare either or against the baby to make sure that they

are still able to find the mutation in . Insurance is not

interested in being tested so the genzyme company say they will do

for free.

the way it was explained to me it sounded like maybe the baby carries my

mutation but they can't find the other one, (but this is just my

guesswork and I could be totally off the mark) and they do not want to

give us a false " carrier only " report until they make the comparison.

(or maybe that is just wishful thinking.......)

Anyway, I am guessing that we are looking at yet another week without

knowing. This is starting to drive me nuts!

any input or advise?

[Guest guest]

Hi Fiona,

I have been thinking of both you and and wondering how the pregnancies

are going. I hope all is well.

The main reason that I had the amnio done is so that I do not have to worry

through my whole pregnancy. I just know the answer one way or the other. I

really think that I am ok with whatever they tell me, I just wish that they

WOULD tell me something. I wouldn't have done the amnio either though if I had

been told that it was any more risky for me than the average person, One of my

major concerns is what if this baby has CF and needs hospitalization right at

birth or something, how am I going to make sure that 's CF stuff is

handled while I am with a baby in a hospital......And what if one gets the other

sick...........

My hubby's sister is also expecting now and they only did the most common

screening on her (one of 's mutations, the one I suspect is from 's

side, is less common), so I am worried that she got a false " not a carrier "

result...........

I just need to put the worries aside and enjoy this pregnancy. And I feel like

I could to a large degree if I just KNEW one way or the other.

Amnio update

>Date: Tue, 17 Feb 2004 18:24:41 -0500

>

>Hi All,

>Well here is the update on my amnio......... No CF results yet! I am so

>very frustrated as I was told 2 weeks and I have just hit three weeks

>without hearing about the CF. Then, today, I got a call from the genetic

>counselor saying that the " mouthwash " thing that they did to get 's

>DNA to compare with the baby's didn't work! They couldn't get enough cells

>or something......So now I have to drag her back for a blood draw on

>Thursday. I am very lucky that she is pretty good about having her blood

>drawn. Anyway, I really do not get why they even need her DNA since we

>know the mutations. they said something about new technology and the test

>is being done differently now so they need to compare either or

>against the baby to make sure that they are still able to find the mutation

>in . Insurance is not interested in being tested so the genzyme

>company say they will do for free.

>

>the way it was explained to me it sounded like maybe the baby carries my

>mutation but they can't find the other one, (but this is just my guesswork

>and I could be totally off the mark) and they do not want to give us a

>false " carrier only " report until they make the comparison. (or maybe that

>is just wishful thinking.......)

>

>Anyway, I am guessing that we are looking at yet another week without

>knowing. This is starting to drive me nuts!

>any input or advise?

>

>

>

>

>

[Guest guest]

Yes I understand what you mean. I get worried about one or both being sick

and me in the hospital. ANd will I be able to manage all the CF stuff while

I am looking after a newborn.

Apart from that I'm on quite a lot of insulin double what I was this time

with Jack but I am on half as much blood pressure tablets. Weird Hey? Must

be because I struggle on way too long with work last time. I thought I was

going to be a super mum or something stupid. I've certainly changed my

thoughts on that one.

Don't worry you'll find out soon and you'd want to them to make sure they

gave you the right answer.

My due date changed too 14th June but I won't go past 38 weeks.It's going

really fast.

Fiona

>

>Reply-To: cfparents

>To: <cfparents >

>Subject: Re: Amnio update

>Date: Wed, 18 Feb 2004 03:14:03 -0500

>

>Hi Fiona,

>I have been thinking of both you and and wondering how the

>pregnancies are going. I hope all is well.

>The main reason that I had the amnio done is so that I do not have to worry

>through my whole pregnancy. I just know the answer one way or the other.

>I really think that I am ok with whatever they tell me, I just wish that

>they WOULD tell me something. I wouldn't have done the amnio either though

>if I had been told that it was any more risky for me than the average

>person, One of my major concerns is what if this baby has CF and needs

>hospitalization right at birth or something, how am I going to make sure

>that 's CF stuff is handled while I am with a baby in a

>hospital......And what if one gets the other sick...........

>My hubby's sister is also expecting now and they only did the most common

>screening on her (one of 's mutations, the one I suspect is from

>'s side, is less common), so I am worried that she got a false " not a

>carrier " result...........

>I just need to put the worries aside and enjoy this pregnancy. And I feel

>like I could to a large degree if I just KNEW one way or the other.

>

> Amnio update

> >Date: Tue, 17 Feb 2004 18:24:41 -0500

> >

> >Hi All,

> >Well here is the update on my amnio......... No CF results yet! I am

>so

> >very frustrated as I was told 2 weeks and I have just hit three weeks

> >without hearing about the CF. Then, today, I got a call from the

>genetic

> >counselor saying that the " mouthwash " thing that they did to get

>'s

> >DNA to compare with the baby's didn't work! They couldn't get enough

>cells

> >or something......So now I have to drag her back for a blood draw on

> >Thursday. I am very lucky that she is pretty good about having her

>blood

> >drawn. Anyway, I really do not get why they even need her DNA since we

> >know the mutations. they said something about new technology and the

>test

> >is being done differently now so they need to compare either or

>

> >against the baby to make sure that they are still able to find the

>mutation

> >in . Insurance is not interested in being tested so the

>genzyme

> >company say they will do for free.

> >

> >the way it was explained to me it sounded like maybe the baby carries

>my

> >mutation but they can't find the other one, (but this is just my

>guesswork

> >and I could be totally off the mark) and they do not want to give us a

> >false " carrier only " report until they make the comparison. (or maybe

>that

> >is just wishful thinking.......)

> >

> >Anyway, I am guessing that we are looking at yet another week without

> >knowing. This is starting to drive me nuts!

> >any input or advise?

> >

> >

> >

> >

> >

[Guest guest]

Thanks ,

I think just hearing that others have been where I am is helping. I think I

would flip if I had to do the amnio again. Way too stressful. I think that I

am worrying more about when the result will come in more than I was about the

actual test itself. my sleep is a mess and she who doesn't usually worry about

stuff to the point of distraction is finding herself quite distracted! Well, I

know that I'll get through this soon, I have been through worse worries in my

life. just so frustrated.

Amnio update

Hi All,

Well here is the update on my amnio......... No CF results yet! I am

so very frustrated as I was told 2 weeks and I have just hit three weeks

without hearing about the CF. Then, today, I got a call from the

genetic counselor saying that the " mouthwash " thing that they did to get

's DNA to compare with the baby's didn't work! They couldn't get

enough cells or something......So now I have to drag her back for a

blood draw on Thursday. I am very lucky that she is pretty good about

having her blood drawn. Anyway, I really do not get why they even need

her DNA since we know the mutations. they said something about new

technology and the test is being done differently now so they need to

compare either or against the baby to make sure that they

are still able to find the mutation in . Insurance is not

interested in being tested so the genzyme company say they will do

for free.

the way it was explained to me it sounded like maybe the baby carries my

mutation but they can't find the other one, (but this is just my

guesswork and I could be totally off the mark) and they do not want to

give us a false " carrier only " report until they make the comparison.

(or maybe that is just wishful thinking.......)

Anyway, I am guessing that we are looking at yet another week without

knowing. This is starting to drive me nuts!

any input or advise?

[Guest guest]

CRUD CRUD CRUD !!! The chart I made for the last post didn't send and now all

you have is a bunch of junk.... oh well, I tried. So here we go, make one of

your own. :-) You have to make your own vertical lines between the father's

genes and the combinations of genes that you come up with.

Mom Cf r

Father

Cf r cf gene No cf gene

cf gene cf/cf =child wcf cf/no cf=child carrier

no cf gene cf/no cf=child carrier no cf/ no cf not affected

Dawn mom of 4, 8 and under, the youngest wcf

[Guest guest]

I think the confusion is that some genetic illnesses ARE sex linked, like

hemophilia, while CF is not.

I actually think that the CF mutation from my hubby is from his dad's side as

he is English & German and somewhat more likely to carry a CF mutation than my

hubby's mom's side, Polish and Lithuanian. He also lost a sib to " pneumonia "

shortly after birth..........so that leaves me suspicious. So in that case, if

it was sex linked then it could not be on his dad's side since inherited

an x chromosome from him in order to be a girl.........

Anyway, The way I understand genetic things that are NOT sex linked is that my

hubby could pass CF to either a girl or boy, the same as I could and the x and y

chromosomes don't really come into play there.

Re: Amnio update

Roxxe, I am left feeling confused by your last two posts. One of us isn't

understanding the way the genetics work with this disease, and it very well

could be me. It's time to pull out the old Mendeleve (isn't that the right

guy?) squares, as that is the easiest way to understand genetics. Hopefully they

will show up.

Mother rÞ

Father rß

Cf gene

No Cf gene

Cf gene

Cf/Cf =

Child with cf

Cf/No Cf=

Child r of cf

No Cf gene

Cf/No Cf=

Child r of cf

No Cf/ No Cf

Child free of cf gene

The gene either is or isn't present in all of the chromasomes that a child

receives from its parents. It doesn't matter what sex the baby is as that is a

whole different square. This is the reason why cf patients all present

differently. We are all basically composed of these types of squares for every

part of our genetic makeup, making us all unique individuals.

Dawn mom of 4, 8 and under, the youngest wcf

[Guest guest]

I don't know what to tell you, maybe it is good news. As Tom Petty said " the

waiting is the hardest part " You'll be in my thoughts . Let us know as

soon as you can.

keeping my fingers crossed is getting tiresome!

love,

[Guest guest]

,

You and Tom are right!

I got cranky yesterday about the whole thing and called the " antipartum

assessment center " to speak to the genetic counselor. Naturally it was her day

off so they will have her call me in the " morning " today. Anyway the doc there

wouldn't call Genzyme to find out what is going on and told me it " wouldn't be

appropriate " for me to call them. I said " appropriate? this is MY genetic

material and MY CHILDREN'S genetic material, I have the right to know what the

progress is on this test. " Well, she didn't like that and didn't seem to agree

with me.

At any rate, I got the phone number from the genzyme website and called myself.

Long story short is that it takes 2 weeks to grow the cells and an additional 2

weeks to run the CF test. So I still have another week to wait for the baby's

test to be finished. then to make it a longer wait, it takes 2 weeks to run the

test on the blood that they will receive from so that adds yet another

week of waiting because they want to compare 's mutations to the baby

before they give a definite result.

Anyway, at least I know how long it will take now, I just wish that the genetic

counselor had been straight with me. They told her on the 3rd of Feb that the

cells wouldn't be finished until the 12th and that it would be 2 weeks from then

at the earliest. This is NOT what she told me. I'll be having an interesting

conversation with her this morning, I am sure.

mom of (AKA The Queen of The Universe) 5 with CF and a boy on the way

Re: Amnio update

I don't know what to tell you, maybe it is good news. As Tom Petty said " the

waiting is the hardest part " You'll be in my thoughts . Let us know as

soon as you can.

keeping my fingers crossed is getting tiresome!

love,

[Guest guest]

I don't think you were the brunt of jokes. It was evident though that you

didn't understand that the cf gene is not a sex linked gene like say color

blindness (carried by the father), or male patterned baldness (carried by the

mother). The theory you have printed can be true only to a certain extent. It

would be more accurate to say...

Mom Dad

some X's =cf some X's & Y's=cf

some X's = no cf some X's & Y's =no cf

It is great that you are thinking about theories about cf. Every one needs to

do so. But remember that a theory is just that and it doesn't always hold true.

We were just trying to help you understand the real way that this particular

gene works. Sorry for any misunderstanding we may have caused.

Dawn mom of 4, 8 and under, the youngest wcf

[Guest guest]

I am so glad you called . I think we all should do that & tell them ,

we're sorry to bother you folks BUT the clinic won't tell us what is

going on . Maybe they would decide they need to send the patient the

info & /or a letter telling you how long it will be ,etc.

ANYWAY . GREAT -your action is going to bring ACTION for you!!

LOVE & HUGS, grandmoMBEV

Re: Amnio update

,

You and Tom are right!

I got cranky yesterday about the whole thing and called the " antipartum

assessment center " to speak to the genetic counselor. Naturally it was

her day off so they will have her call me in the " morning " today.

Anyway the doc there wouldn't call Genzyme to find out what is going on

and told me it " wouldn't be appropriate " for me to call them. I said

" appropriate? this is MY genetic material and MY CHILDREN'S genetic

material, I have the right to know what the progress is on this test. "

Well, she didn't like that and didn't seem to agree with me.

At any rate, I got the phone number from the genzyme website and called

myself. Long story short is that it takes 2 weeks to grow the cells and

an additional 2 weeks to run the CF test. So I still have another week

to wait for the baby's test to be finished. then to make it a longer

wait, it takes 2 weeks to run the test on the blood that they will

receive from so that adds yet another week of waiting because

they want to compare 's mutations to the baby before they give a

definite result.

Anyway, at least I know how long it will take now, I just wish that the

genetic counselor had been straight with me. They told her on the 3rd

of Feb that the cells wouldn't be finished until the 12th and that it

would be 2 weeks from then at the earliest. This is NOT what she told

me. I'll be having an interesting conversation with her this morning, I

am sure. mom of (AKA The Queen of The Universe) 5 with CF

and a boy on the way

Re: Amnio update

I don't know what to tell you, maybe it is good news. As Tom Petty

said " the waiting is the hardest part " You'll be in my thoughts .

Let us know as soon as you can.

keeping my fingers crossed is getting tiresome!

love,

[Guest guest]

I like that advice!!!!!!!! The Ice Cream will go well with those nuts.

Thanks!

Re: Amnio update

>>This is starting to drive me nuts!

> any input or advise?

>

> >>

,

My input is to consume large volumes of ice cream, or cookies, or

whatever does not make you ill:) I'm sorry you are going nuts, I

can certainly sympathize with you. Hang in there!

e

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

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]

>>This is starting to drive me nuts!

> any input or advise?

>

> >>

,

My input is to consume large volumes of ice cream, or cookies, or

whatever does not make you ill:) I'm sorry you are going nuts, I

can certainly sympathize with you. Hang in there!

e

[Guest guest]

,

Whatever you do, keep some rubber gloves on, otherwise you won't have

any fingers left, ;-) No, really, just playing and pulling your leg.

Gee, I know this is got to be painful waiting, yes eat as much ice

cream and cookies, to curve those nerves, get out, and distract

yourself and drink lots of chammomille tea w/ honey.

Remember positive thinking and healthy visualizations.

> Ok,

> Everyone is probably sick of me and this subject, but here is what

I was told by the genetic counselor. She " didn't discuss dates " with

genzyme. They didn't tell her that the cells wouldn't be ready for

the test until the 12th or that the test wouldn't be finished running

until the 26th. She was going by the dates for other genetic tests

that she has experience with. Well, I am seething inside because she

shouldn't have given me the dates that she did if she didn't really

know! However, I am staying nice with her because I know that I have

to depend on her to get the results when they do come in.

> Then she proceeds to tell me that Genzyme has already told her

that they will not release ANY results to her until 's DNA test

has been run. This will take us into the beginning of March and more

than 5 weeks after the amnio. I told her in no uncertain terms that

I expect to get whatever results that they have on the baby's cells

as soon as the test is complete and told her that she may just have

to press them for whatever they have at that point. I told her that

I wanted a " progress report " next Friday. and that I wouldn't hold

genzyme to whatever they have until 's DNA has been compared

and they can give a full report of the results.

> UGGGHHHH!!!!!!!

>

>

>

>

[Guest guest]

,

How frustrating for you. I hope things can be

expedited for you without too much trouble from

Genzyme or your genetic counselor.

hugs,

C

Mommy to Mick and Alli, 4 yo twins wcf

--- ANDREA FITTING wrote:

> Ok,

> Everyone is probably sick of me and this subject,

> but here is what I was told by the genetic

> counselor. She " didn't discuss dates " with genzyme.

> They didn't tell her that the cells wouldn't be

> ready for the test until the 12th or that the test

> wouldn't be finished running until the 26th. She

> was going by the dates for other genetic tests that

> she has experience with. Well, I am seething inside

> because she shouldn't have given me the dates that

> she did if she didn't really know! However, I am

> staying nice with her because I know that I have to

> depend on her to get the results when they do come

> in.

> Then she proceeds to tell me that Genzyme has

> already told her that they will not release ANY

> results to her until 's DNA test has been run.

> This will take us into the beginning of March and

> more than 5 weeks after the amnio. I told her in no

> uncertain terms that I expect to get whatever

> results that they have on the baby's cells as soon

> as the test is complete and told her that she may

> just have to press them for whatever they have at

> that point. I told her that I wanted a " progress

> report " next Friday. and that I wouldn't hold

> genzyme to whatever they have until 's DNA has

> been compared and they can give a full report of the

> results.

> UGGGHHHH!!!!!!!

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

[Guest guest]

The cf gene and its mutations are on Chromosome 7; we ALL have a Chromosome 7,

guys and girls--men and women, kids and adults!

Cheers! n Rojas, and you are right is is a recessive mendelian

pattern, not sex-linked. . .

Re: Amnio update

I don't think you were the brunt of jokes. It was evident though that you

didn't understand that the cf gene is not a sex linked gene like say color

blindness (carried by the father), or male patterned baldness (carried by the

mother). The theory you have printed can be true only to a certain extent. It

would be more accurate to say...

Mom Dad

some X's =cf some X's & Y's=cf

some X's = no cf some X's & Y's =no cf

It is great that you are thinking about theories about cf. Every one needs to

do so. But remember that a theory is just that and it doesn't always hold true.

We were just trying to help you understand the real way that this particular

gene works. Sorry for any misunderstanding we may have caused.

Dawn mom of 4, 8 and under, the youngest wcf

[Guest guest]

Fiona,

There is a database for " online babyshowers " . Do you mind adding

your information? I would like to send your new baby a " welcome to

the world gift " when he or she gets a little closer to arriving.

Gale

> Dear ,

>

> I feel for you, it must be really frustrating waiting. We'll be

doing the

> waiting after the baby is born and I am sure I will go out of my

mind

> watching the baby like a hawk. I hope that they will be able to do

the

> testing quickly. They have promised that they will but you know

what they

> are like.

>

> I've had such a difficult time with pregnancies in the past the

doctors felt

> it might be risky to have an amino and I couldn't bear the thought

of having

> a termination. So we're just sitting it out. I'm trying really hard

not to

> think about it too much as I can't do anything about it but I am

worried and

> I am worried that if it does have CF if might be more sick than

Jack who has

> been fairly well so far or that Jack will get sick when I have the

new baby

> or I have to go sit it out in the hospital at the end like I did

last time.

> So much to worry about..

>

> When Jack was diagnosed with CF my sister was expecting twins and

she got

> tested herself to find out that she was a carrier that took 3 weeks

and then

> another 2 more weeks to find out that her partner is not a carrier.

But the

> wait went on forever and she was already apprehensive about having

twins.

> Thankfully they are OK

>

> Hang in there

> thinking of you

> Fiona

> mo Jack 13 mths wcf and 23 weeks pregnant

>

> >From: " ANDREA FITTING " <drea@m...>

> >Reply-To: cfparents

> >To: " CF Parents " <cfparents >, " CysticFibrosis2Chat "

> ><CysticFibrosis2Chat@g...>, " TeamJane "

> ><TeamJane@g...>

> >Subject: Amnio update

> >Date: Tue, 17 Feb 2004 18:24:41 -0500

> >

> >Hi All,

> >Well here is the update on my amnio......... No CF results yet!

I am so

> >very frustrated as I was told 2 weeks and I have just hit three

weeks

> >without hearing about the CF. Then, today, I got a call from the

genetic

> >counselor saying that the " mouthwash " thing that they did to get

's

> >DNA to compare with the baby's didn't work! They couldn't get

enough cells

> >or something......So now I have to drag her back for a blood draw

on

> >Thursday. I am very lucky that she is pretty good about having

her blood

> >drawn. Anyway, I really do not get why they even need her DNA

since we

> >know the mutations. they said something about new technology and

the test

> >is being done differently now so they need to compare either

or

> >against the baby to make sure that they are still able to find the

mutation

> >in . Insurance is not interested in being tested so

the genzyme

> >company say they will do for free.

> >

> >the way it was explained to me it sounded like maybe the baby

carries my

> >mutation but they can't find the other one, (but this is just my

guesswork

> >and I could be totally off the mark) and they do not want to give

us a

> >false " carrier only " report until they make the comparison. (or

maybe that

> >is just wishful thinking.......)

> >

> >Anyway, I am guessing that we are looking at yet another week

without

> >knowing. This is starting to drive me nuts!

> >any input or advise?

> >

> >

> >

> >

> >

[Guest guest]

Fiona,

if you go to the CF Parents site, click on the database, I think you can add

yourself that way. Otherwise e-mail the info to Torsten and he can add

you...........

Amnio update

> > >Date: Tue, 17 Feb 2004 18:24:41 -0500

> > >

> > >Hi All,

> > >Well here is the update on my amnio......... No CF results yet!

>I am so

> > >very frustrated as I was told 2 weeks and I have just hit three

>weeks

> > >without hearing about the CF. Then, today, I got a call from the

>genetic

> > >counselor saying that the " mouthwash " thing that they did to get

>'s

> > >DNA to compare with the baby's didn't work! They couldn't get

>enough cells

> > >or something......So now I have to drag her back for a blood draw

>on

> > >Thursday. I am very lucky that she is pretty good about having

>her blood

> > >drawn. Anyway, I really do not get why they even need her DNA

>since we

> > >know the mutations. they said something about new technology and

>the test

> > >is being done differently now so they need to compare either

> or

> > >against the baby to make sure that they are still able to find the

>mutation

> > >in . Insurance is not interested in being tested so

>the genzyme

> > >company say they will do for free.

> > >

> > >the way it was explained to me it sounded like maybe the baby

>carries my

> > >mutation but they can't find the other one, (but this is just my

>guesswork

> > >and I could be totally off the mark) and they do not want to give

>us a

> > >false " carrier only " report until they make the comparison. (or

>maybe that

> > >is just wishful thinking.......)

> > >

> > >Anyway, I am guessing that we are looking at yet another week

>without

> > >knowing. This is starting to drive me nuts!

> > >any input or advise?

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Fiona,

Sorry that I did not reply. I have not been on the site all week.

I am glad to see that you were able to add your name to the baby

list. We (cf parents group) are going to have FOUR babies this

summer. That is pretty cool.

Gale

> > > Dear ,

> > >

> > > I feel for you, it must be really frustrating waiting. We'll be

> >doing the

> > > waiting after the baby is born and I am sure I will go out of my

> >mind

> > > watching the baby like a hawk. I hope that they will be able to

do

> >the

> > > testing quickly. They have promised that they will but you know

> >what they

> > > are like.

> > >

> > > I've had such a difficult time with pregnancies in the past the

> >doctors felt

> > > it might be risky to have an amino and I couldn't bear the

thought

> >of having

> > > a termination. So we're just sitting it out. I'm trying really

hard

> >not to

> > > think about it too much as I can't do anything about it but I am

> >worried and

> > > I am worried that if it does have CF if might be more sick than

> >Jack who has

> > > been fairly well so far or that Jack will get sick when I have

the

> >new baby

> > > or I have to go sit it out in the hospital at the end like I did

> >last time.

> > > So much to worry about..

> > >

> > > When Jack was diagnosed with CF my sister was expecting twins

and

> >she got

> > > tested herself to find out that she was a carrier that took 3

weeks

> >and then

> > > another 2 more weeks to find out that her partner is not a

carrier.

> >But the

> > > wait went on forever and she was already apprehensive about

having

> >twins.

> > > Thankfully they are OK

> > >

> > > Hang in there

> > > thinking of you

> > > Fiona

> > > mo Jack 13 mths wcf and 23 weeks pregnant

> > >

> > > >From: " ANDREA FITTING " <drea@m...>

> > > >Reply-To: cfparents

> > > >To: " CF Parents "

<cfparents >, " CysticFibrosis2Chat "

> > > ><CysticFibrosis2Chat@g...>, " TeamJane "

> > > ><TeamJane@g...>

> > > >Subject: Amnio update

> > > >Date: Tue, 17 Feb 2004 18:24:41 -0500

> > > >

> > > >Hi All,

> > > >Well here is the update on my amnio......... No CF results yet!

> >I am so

> > > >very frustrated as I was told 2 weeks and I have just hit three

> >weeks

> > > >without hearing about the CF. Then, today, I got a call from

the

> >genetic

> > > >counselor saying that the " mouthwash " thing that they did to

get

> >'s

> > > >DNA to compare with the baby's didn't work! They couldn't get

> >enough cells

> > > >or something......So now I have to drag her back for a blood

draw

> >on

> > > >Thursday. I am very lucky that she is pretty good about having

> >her blood

> > > >drawn. Anyway, I really do not get why they even need her DNA

> >since we

> > > >know the mutations. they said something about new technology

and

> >the test

> > > >is being done differently now so they need to compare either

> > or

> > > >against the baby to make sure that they are still able to find

the

> >mutation

> > > >in . Insurance is not interested in being tested so

> >the genzyme

> > > >company say they will do for free.

> > > >

> > > >the way it was explained to me it sounded like maybe the baby

> >carries my

> > > >mutation but they can't find the other one, (but this is just

my

> >guesswork

> > > >and I could be totally off the mark) and they do not want to

give

> >us a

> > > >false " carrier only " report until they make the comparison.

(or

> >maybe that

> > > >is just wishful thinking.......)

> > > >

> > > >Anyway, I am guessing that we are looking at yet another week

> >without

> > > >knowing. This is starting to drive me nuts!

> > > >any input or advise?

> > > >

> > > >

> > > >

> > > >

> > > >