RE: Waiting to know

October 10, 2001

YES, In my humble opinion , I am shocked they didn't do that FIRST. as it is

the least invasive and would have given a fairly good idea as to what else

of the tests would confirm that if it was a borderline. Gosh, does that

sound too simple or what????????Anyway. That is one that be done....I am so

sorry your wee one has had to endure all of this but if they can pinpoint it

now, she can have a great life ahead with all of the wonderful science being

done .....not just for the dream cure -------but for great treatments and

maintaince. I hold you and your precious family in my thoughts .........

LOVE & HUGS, grandmomBEV

Waiting to know

Hi All,

A couple of days ago a nice person off of another web site

recommended that I visit here. I have been reading your posts since

then and was not going to bother you, but I'm still pretty scared and

am hoping someone out there will give me an idea of what else could

cause my daughter's symptoms. So if you don't mind, here it goes:

My youngest daughter is 18 months old. Her name is Brooklyn. When

she was born she spent a week in NICU for a lung infection of some

kind. After we brought her home, she seemed fine. She had trouble

digesting formula when I stopped breast feeding and we went through

every type (even had to special order some through the pharmacy) and

nothing worked. Everything gave her extremely bad constipation. So

at nine months she went off bottle and formula for good. This seemed

to help, although she is still constipated always, it's just not

quite as painful for her. Over the past year and a half she has had

many " viral " infections. I put that in quotes because that's what

they always called it when she was vomiting and getting dehydrated.

She had to be hospitalized for dehydration some, but sick a lot.

Then, about six (or is it seven now) weeks ago, Brooklyn started up

with another viral infection. Only this time when it went away after

three or four days, it started back after 3 or 4 more days. She has

continued this pattern for over a month now. She is constipated for

several days and then vomiting with diarrhea for several days.

She's ended up in the hospital twice now this time, and it is a

weekly struggle to keep her out.

She has two great pediatricians that are working together to find out

what is wrong. She also has a pretty good GI doctor. She has had an

upper GI, an endoscope, urine tests, lots of blood tests, x-rays, ect.

They have not been able to diagnose.

Then about two weeks ago a nurse saw Brooklyns BM's. Not the

constipated kind, but the diarrhea kind that is really pale and

smells soooo bad that you really almost get sick when changing her.

She immediatley said that it had the CF look and smell.

Now her Pediatricians (well one of them, Dr. Boger wasn't in last

visit) are pretty conviced she has CF (or is at least afraid it may

be). Last Tuesday they tried to do a blood test, but could not get

any blood (her veins kept " blowing " ). So they ended up doing a cheek

swab. They also asked for a stool sample. It took 5 days for her to

have a BM, but I took it in. They are measuring the fat content. It

was not a " bad " BM. It was brown and streaked with blood. I am not

sure if that will show the same results as the other BM's.

Anyway, I am really sorry that this is so long. I am really worried

and have not been able to eat or sleep for quite some time (at least

I am losing weight). If anyone can think of anything else this could

be please let me know.

Also, do you think I should call and ask why we have not had a sweat

test done. It seems strange after what I've read on-line, but then

I'm a Kindergarten teacher, not a doctor.

Thanks Again,

Christy

Mother to Brooklyn (18 mon) and (6 yrs)

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.

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

October 10, 2001

Well, if you don't want the answer to be CF, the fact that she's constipated

a lot is a good sign -- I think you'll find that we as CF parents have the

opposite problem with our children's stools. The blood in the stool is

troubling -- another contrary indication to CF. You say she has had a lot of

" viral " infections -- sounds like she may have an immune system deficiency as

it is my experience that children with CF actually have a heightened immune

system. No matter what, it sounds like you're going through a really rough

time now. How is her weight? Is she growing " normally " (aside from the

illnesses?) You should receive the DNA results back within 10 days or so --

so at least you can rule out CF, if there is nothing found. Do you know if

they did the comprehensive gene testing or the " 5-gene " test? If the latter,

you might want to suggest another DNA for the (I believe) 98-gene test. Of

course, a sweat test could guide you and you get the results in 45 minutes.

Why hasn't that been done? Make sure you go to a CF Center for this or you

may end up having it repeated anyway. My thoughts are with you. Kathleen

Kennedy

October 10, 2001

Christy,

It doesn't surprise me a bit that it has taken so long. It took our doctor 6

years to diagnosed are oldest and if it wasn't or the polyps I am sure we

still wouldn't have know today. Because our girls were developing find but

they had funny stools but we just thought it was just there system and our

doctor just asked if we had CF in our family and of course we didn't know of

any one so they just shrugged there shoulders and said I'm sure she is just

fine. Lots of Pediatricians don't know enough about CF and that is why lots

of kids are not diagnosed until later in life. Some kids are called

borderline and are not being treated because there are so many new mutations

that are being discovered as CF genes.

It sound like your child should be tested for CF because she does have a lot

of they symptoms of CF but remember not to give up and keep pushing the

doctors until you get some answers. Deb mom of 9 w/CF, Lynzie 7

wo/CF and Natalynn 4 w/CF

October 10, 2001

In a message dated 10/10/01 10:44:37 AM Central Daylight Time, jfkdc@...

writes:

<< Well, if you don't want the answer to be CF, the fact that she's

constipated

a lot is a good sign -- I think you'll find that we as CF parents have the

opposite problem with our children's stools. The blood in the stool is

troubling -- another contrary indication to CF. You say she has had a lot

of

" viral " infections -- sounds like she may have an immune system deficiency

as

it is my experience that children with CF actually have a heightened immune

system. >>

Kathleen,

I'm about to burst your bubble. Constipation can be a sign of bowel

obstruction, which is not that uncommon in people with CF, especially those

with certain gene types. Not all people with CF need enzymes or have

digestive problems. This is what makes CF go undiagnosed for so long --

doctors believe there is only one picture and most doctors don't look at the

whole picture.

Blood in the stool is not a contraindication of CF. Blood can occur from

tearing caused by straining during a bowel movement or ruptured blood vessels

from too-frequent bowel movements. My son went undiagnosed for CF for 4.4

years. As an infant and toddler he had foul-smelling, greasy, bulky, runny,

yellow bowel movements (which we think of as " typical " CF yet his doctors

sure missed these clues!). He also had blood in his stools as an infant but

the pediatrician brushed away my concern saying it was " a virus " and put him

on Donnatal Liquid. For weeks he stayed on the Donnatal because the doctor

said it helped the diarrhea. When I question why he always had diarrhea, the

answer was " it's just a virus. "

He was in the peds office often for bronchitis, ear infections, congestion,

diarrhea. And it was always " just a virus " or " allergies " or " it's typical

childhood stuff, you're just an overanxious mother. "

Later, our CF doctor explained that people with CF have an overactive immune

system. If you study how the body works, an overactive immune system isn't

good nor does it mean they can't catch whatever is going around.

Kim

Mom to (age 22 with CF and asthma) and (age 18 1/2 asthma and no

CF)

October 10, 2001

People can have an obstruction but sometimes a bit of bowel movement still

gets past the obstruction. This is due to the colons ability to expand.

My heart really hurts for you Christy because you sound like you're getting

the run-around just like I got from all my son's doctors until he was finally

diagnosed at age 4. It was the nurse in our first pediatrician's office who

said I was an overanxious mother and she said it while looking smug. That

really stings.

After my son went for a sweat test, another nurse at that same pediatrician's

office looked scared when I told her I'd had him tested that morning. She

tried to pacify me saying, " Oh, my son tastes salty too when he sweats, all

kids do, and has asthma too and he doesn't have CF, so I'm sure the test will

be negative! " But she looked scared.

People don't want to hear news like this because it makes them feel

vulnerable and that nurse felt vulnerable. I always got the feeling she was

suddenly remembering something from her nursing school medical books and

wondering how they could all miss the symptoms in my son...

Whatever happens, remember you're the mom and as such, you're a partner in

your daughter's health care -- both of your daughters -- until they are old

enough to help make their own health decisions. Parenting takes courage

sometimes and you can do it.

Please don't be afraid. Your daughter will feel so much better once she gets

the treatment she needs -- whether or not she has CF -- and with proper

treatment she will start to gain weight and thrive.

Right now, if you want to do something proactive, take her back to the doctor

and insist they do a sputum culture and send it off to see what's culturing

in her lungs.

That is another well to tell -- if she cultures pseudomonas then likely she

has CF.

But because your daughter has already spent time in hospitals she could have

picked up a bacteria, not " a virus. "

My son had a sputum culture done three days after his sweat test and the

sputum came back positive for staph. After 14 days of antibiotics and

starting enzymes, he felt so much better and looked so much better. The

swollen belly started to disappear because his digestion was improved.

Blessings to you ... hang in there.

Kim

Mom to (age 22 with CF and asthma) and (age 18 1/2 without CF)

October 10, 2001

Hi Christy,

Sorry to hear about your daughter. My daughter Emma is also 18

months old. I don't post often, but after reading your post I felt I

needed to offer some encouragement. When Emma was 6 months old I had

to beg the paediatrician for a sweat test as the blood work, x-rays

and ultrasounds were not conclusive. He honestly believed that a

patient with CF would have respiratory problems from birth and not

only a pancreatic insufficiency. After hours of research about my

daughters symptoms I believed she had CF and once I had convinced him

that she showed symptoms, he ordered the test. He was shocked that

it came back positive. After diagnosis I promptly found a new

paeditrician!! I'm sure everyone on this board knows how scared you

must feel right now so I hope you have a terrific support system to

help you though this trying time. Best Wishes,

Missi mom of Emma 18 mo.w/cf and Mathieu 4 mo.wo/cf

October 10, 2001

Kim, you didn't burst my bubble. And despite having a child with CF, I still

espouse the theory that " common things are common. " As you indicated within

your post, your child had greasy, smelly, runny poops. Those are the common

poops for CF. That's all I meant when I said that constipation was

contra-indicative of CF. Bacterial infections are common for kids with CF,

moreso than viral (at least that has been my experience). Sure, for every

" rule " in CF there is an exception. And frankly, I don't know what bubble

you're talking about. My child was born with a stomach blockage so it's not

as if I haven't " been there. " I'm glad to see you have an older child with

cf -- it gives us all hope. How is he doing?

October 10, 2001

Hi Christy,

Welcome to the list. You are in my thoughts as you wait a diagnosis. Protocol

at our hospital is to start with a sweat test and then move on to the genetics.

However could it be that there is no lab that does the sweats in your area?

They can send off the blood/swabs elsewhere but they need to have a trained

technician on site to do the sweat.

We are also waiting on results for our daughter. It is a tough time, I know,

but dealing with each problem one step at a time helps and then deal with the

" big picture " if that ever comes into focus.

All the best,

Jane

TheStouts@... wrote:

> Hi All,

> A couple of days ago a nice person off of another web site

> recommended that I visit here. I have been reading your posts since

> then and was not going to bother you, but I'm still pretty scared and

> am hoping someone out there will give me an idea of what else could

> cause my daughter's symptoms. So if you don't mind, here it goes:

>

> My youngest daughter is 18 months old. Her name is Brooklyn. When

> she was born she spent a week in NICU for a lung infection of some

> kind. After we brought her home, she seemed fine. She had trouble

> digesting formula when I stopped breast feeding and we went through

> every type (even had to special order some through the pharmacy) and

> nothing worked. Everything gave her extremely bad constipation. So

> at nine months she went off bottle and formula for good. This seemed

> to help, although she is still constipated always, it's just not

> quite as painful for her. Over the past year and a half she has had

> many " viral " infections. I put that in quotes because that's what

> they always called it when she was vomiting and getting dehydrated.

> She had to be hospitalized for dehydration some, but sick a lot.

>

> Then, about six (or is it seven now) weeks ago, Brooklyn started up

> with another viral infection. Only this time when it went away after

> three or four days, it started back after 3 or 4 more days. She has

> continued this pattern for over a month now. She is constipated for

> several days and then vomiting with diarrhea for several days.

> She's ended up in the hospital twice now this time, and it is a

> weekly struggle to keep her out.

>

> She has two great pediatricians that are working together to find out

> what is wrong. She also has a pretty good GI doctor. She has had an

> upper GI, an endoscope, urine tests, lots of blood tests, x-rays, ect.

> They have not been able to diagnose.

>

> Then about two weeks ago a nurse saw Brooklyns BM's. Not the

> constipated kind, but the diarrhea kind that is really pale and

> smells soooo bad that you really almost get sick when changing her.

> She immediatley said that it had the CF look and smell.

>

> Now her Pediatricians (well one of them, Dr. Boger wasn't in last

> visit) are pretty conviced she has CF (or is at least afraid it may

> be). Last Tuesday they tried to do a blood test, but could not get

> any blood (her veins kept " blowing " ). So they ended up doing a cheek

> swab. They also asked for a stool sample. It took 5 days for her to

> have a BM, but I took it in. They are measuring the fat content. It

> was not a " bad " BM. It was brown and streaked with blood. I am not

> sure if that will show the same results as the other BM's.

>

> Anyway, I am really sorry that this is so long. I am really worried

> and have not been able to eat or sleep for quite some time (at least

> I am losing weight). If anyone can think of anything else this could

> be please let me know.

>

> Also, do you think I should call and ask why we have not had a sweat

> test done. It seems strange after what I've read on-line, but then

> I'm a Kindergarten teacher, not a doctor.

>

> Thanks Again,

> Christy

> Mother to Brooklyn (18 mon) and (6 yrs)

>

> 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.

>

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

>

October 10, 2001

Brooklyn is underweight (I guess). Her GI doctor keeps bringing up Failure to

Thrive. She has gained a little over a pound in the past 6 months. She has

dropped off a little in her weight lately, but she was up to the 3% about 2

months ago. Her height was up to the 20% (I think). I'm not sure how many

mutations it will identify. They sent it to Genzyme (sp?) in Mass. I think

this is supposed to be a good lab. I hope you are right that it is not CF, but

I want them to find whatever it is. Mainly, I just want her to feel better.

Thanks for the responce.

Christy

>

> Well, if you don't want the answer to be CF, the fact that she's constipated

> a lot is a good sign -- I think you'll find that we as CF parents have the

> opposite problem with our children's stools. The blood in the stool is

> troubling -- another contrary indication to CF. You say she has had a lot of

> " viral " infections -- sounds like she may have an immune system deficiency as

> it is my experience that children with CF actually have a heightened immune

> system. No matter what, it sounds like you're going through a really rough

> time now. How is her weight? Is she growing " normally " (aside from the

> illnesses?) You should receive the DNA results back within 10 days or so --

> so at least you can rule out CF, if there is nothing found. Do you know if

> they did the comprehensive gene testing or the " 5-gene " test? If the latter,

> you might want to suggest another DNA for the (I believe) 98-gene test. Of

> course, a sweat test could guide you and you get the results in 45 minutes.

> Why hasn't that been done? Make sure you go to a CF Center for this or you

> may end up having it repeated anyway. My thoughts are with you. Kathleen

> Kennedy

>

> 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.

>

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

>

October 10, 2001

Jane,

I called just today to ask why they did not do a sweat test. The nurse told me

that they used to do them, but that they were " old fashioned " and they had moved

on. I told her that from what I had read, that most people did it first still.

She told me to stop reading junk and that I was scaring myself. She also said

that she was not worried and that everything would be O.K. I told her that even

though Brooklyn had gone for several days without vomiting she still looks bad

and that her tummy was so big and the circles under her eyes were so dark that I

was still really worried. She said to relax and she would call me with the

negative result when it came in. Maybe I am just over reacting, but she seems

to look so bad and my mommy instinct is at full alert! Thanks Again.

Christy

>

> Hi Christy,

> Welcome to the list. You are in my thoughts as you wait a diagnosis.

Protocol

> at our hospital is to start with a sweat test and then move on to the

genetics.

> However could it be that there is no lab that does the sweats in your area?

> They can send off the blood/swabs elsewhere but they need to have a trained

> technician on site to do the sweat.

> We are also waiting on results for our daughter. It is a tough time, I know,

> but dealing with each problem one step at a time helps and then deal with the

> " big picture " if that ever comes into focus.

> All the best,

> Jane

>

> TheStouts@... wrote:

>

> > Hi All,

> > A couple of days ago a nice person off of another web site

> > recommended that I visit here. I have been reading your posts since

> > then and was not going to bother you, but I'm still pretty scared and

> > am hoping someone out there will give me an idea of what else could

> > cause my daughter's symptoms. So if you don't mind, here it goes:

> >

> > My youngest daughter is 18 months old. Her name is Brooklyn. When

> > she was born she spent a week in NICU for a lung infection of some

> > kind. After we brought her home, she seemed fine. She had trouble

> > digesting formula when I stopped breast feeding and we went through

> > every type (even had to special order some through the pharmacy) and

> > nothing worked. Everything gave her extremely bad constipation. So

> > at nine months she went off bottle and formula for good. This seemed

> > to help, although she is still constipated always, it's just not

> > quite as painful for her. Over the past year and a half she has had

> > many " viral " infections. I put that in quotes because that's what

> > they always called it when she was vomiting and getting dehydrated.

> > She had to be hospitalized for dehydration some, but sick a lot.

> >

> > Then, about six (or is it seven now) weeks ago, Brooklyn started up

> > with another viral infection. Only this time when it went away after

> > three or four days, it started back after 3 or 4 more days. She has

> > continued this pattern for over a month now. She is constipated for

> > several days and then vomiting with diarrhea for several days.

> > She's ended up in the hospital twice now this time, and it is a

> > weekly struggle to keep her out.

> >

> > She has two great pediatricians that are working together to find out

> > what is wrong. She also has a pretty good GI doctor. She has had an

> > upper GI, an endoscope, urine tests, lots of blood tests, x-rays, ect.

> > They have not been able to diagnose.

> >

> > Then about two weeks ago a nurse saw Brooklyns BM's. Not the

> > constipated kind, but the diarrhea kind that is really pale and

> > smells soooo bad that you really almost get sick when changing her.

> > She immediatley said that it had the CF look and smell.

> >

> > Now her Pediatricians (well one of them, Dr. Boger wasn't in last

> > visit) are pretty conviced she has CF (or is at least afraid it may

> > be). Last Tuesday they tried to do a blood test, but could not get

> > any blood (her veins kept " blowing " ). So they ended up doing a cheek

> > swab. They also asked for a stool sample. It took 5 days for her to

> > have a BM, but I took it in. They are measuring the fat content. It

> > was not a " bad " BM. It was brown and streaked with blood. I am not

> > sure if that will show the same results as the other BM's.

> >

> > Anyway, I am really sorry that this is so long. I am really worried

> > and have not been able to eat or sleep for quite some time (at least

> > I am losing weight). If anyone can think of anything else this could

> > be please let me know.

> >

> > Also, do you think I should call and ask why we have not had a sweat

> > test done. It seems strange after what I've read on-line, but then

> > I'm a Kindergarten teacher, not a doctor.

> >

> > Thanks Again,

> > Christy

> > Mother to Brooklyn (18 mon) and (6 yrs)

> >

> > 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.

> >

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

> >

October 10, 2001

when did they do the test? Terry's blood test at birth was back within

24hrs. don't talk to the nurses, get the info right from the dr. nurses

sometimes dont know the whole story.

April D 29nocf

mom of Chad H 10wcf

and Terrance H 7nocf

ps. good luck with the results whatever they may be!

Re: Waiting to know

> Brooklyn is underweight (I guess). Her GI doctor keeps bringing up

Failure to Thrive. She has gained a little over a pound in the past 6

months. She has dropped off a little in her weight lately, but she was up to

the 3% about 2 months ago. Her height was up to the 20% (I think). I'm not

sure how many mutations it will identify. They sent it to Genzyme (sp?) in

Mass. I think this is supposed to be a good lab. I hope you are right that

it is not CF, but I want them to find whatever it is. Mainly, I just want

her to feel better. Thanks for the responce.

>

> Christy

>

> >

> > Well, if you don't want the answer to be CF, the fact that she's

constipated

> > a lot is a good sign -- I think you'll find that we as CF parents have

the

> > opposite problem with our children's stools. The blood in the stool is

> > troubling -- another contrary indication to CF. You say she has had a

lot of

> > " viral " infections -- sounds like she may have an immune system

deficiency as

> > it is my experience that children with CF actually have a heightened

immune

> > system. No matter what, it sounds like you're going through a really

rough

> > time now. How is her weight? Is she growing " normally " (aside from the

> > illnesses?) You should receive the DNA results back within 10 days or

so --

> > so at least you can rule out CF, if there is nothing found. Do you know

if

> > they did the comprehensive gene testing or the " 5-gene " test? If the

latter,

> > you might want to suggest another DNA for the (I believe) 98-gene test.

Of

> > course, a sweat test could guide you and you get the results in 45

minutes.

> > Why hasn't that been done? Make sure you go to a CF Center for this or

you

> > may end up having it repeated anyway. My thoughts are with you.

Kathleen

> > Kennedy

> >

> > 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.

> >

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

> >

October 10, 2001

Melinda,

Yes we are just waiting right now. I asked what the next step was if this was

negative and Dr. told me they were not sure.

She has had an upper GI and an endoscope, wouldn't that rule out a blockage?

Yes she is pooping. It took her 5 days between the last two poops, but she

went. So, I don't think she is obstructed. Thank You!

Christy

>

> Christy -

>

> My heart gores out to you. I hope they have results for you soon. If she

> really looks that bad, maybe you should consider taking her in to another

> doctor. The big tummy concerns me a bit. My son had a really big tummy

> once, and his bowel was blocked. I don't tell you this to scare you, but it

> could be serious if it perforates. Has she been pooping? Boy, I wish we

> had more for you. Just try to hang in there, but if she's really not well,

> you should insist she be seen, and maybe by soneone else. If it's not CF,

> and she is this bad, what else are they doing for her? Just waiting?

>

> Melinda - mom to RYan 2.5 wcf and sister 25 wcf

> Re: Waiting to know

>

> Jane,

> I called just today to ask why they did not do a sweat test. The nurse

> told me that they used to do them, but that they were " old fashioned " and

> they had moved on. I told her that from what I had read, that most people

> did it first still. She told me to stop reading junk and that I was scaring

> myself. She also said that she was not worried and that everything would be

> O.K. I told her that even though Brooklyn had gone for several days without

> vomiting she still looks bad and that her tummy was so big and the circles

> under her eyes were so dark that I was still really worried. She said to

> relax and she would call me with the negative result when it came in. Maybe

> I am just over reacting, but she seems to look so bad and my mommy instinct

> is at full alert! Thanks Again.

> Christy

>

> >

> > Hi Christy,

> > Welcome to the list. You are in my thoughts as you wait a diagnosis.

> Protocol

> > at our hospital is to start with a sweat test and then move on to the

> genetics.

> > However could it be that there is no lab that does the sweats in your

> area?

> > They can send off the blood/swabs elsewhere but they need to have a

> trained

> > technician on site to do the sweat.

> > We are also waiting on results for our daughter. It is a tough time, I

> know,

> > but dealing with each problem one step at a time helps and then deal

> with the

> > " big picture " if that ever comes into focus.

> > All the best,

> > Jane

> >

> > TheStouts@... wrote:

> >

> > > Hi All,

> > > A couple of days ago a nice person off of another web site

> > > recommended that I visit here. I have been reading your posts since

> > > then and was not going to bother you, but I'm still pretty scared and

> > > am hoping someone out there will give me an idea of what else could

> > > cause my daughter's symptoms. So if you don't mind, here it goes:

> > >

> > > My youngest daughter is 18 months old. Her name is Brooklyn. When

> > > she was born she spent a week in NICU for a lung infection of some

> > > kind. After we brought her home, she seemed fine. She had trouble

> > > digesting formula when I stopped breast feeding and we went through

> > > every type (even had to special order some through the pharmacy) and

> > > nothing worked. Everything gave her extremely bad constipation. So

> > > at nine months she went off bottle and formula for good. This seemed

> > > to help, although she is still constipated always, it's just not

> > > quite as painful for her. Over the past year and a half she has had

> > > many " viral " infections. I put that in quotes because that's what

> > > they always called it when she was vomiting and getting dehydrated.

> > > She had to be hospitalized for dehydration some, but sick a lot.

> > >

> > > Then, about six (or is it seven now) weeks ago, Brooklyn started up

> > > with another viral infection. Only this time when it went away after

> > > three or four days, it started back after 3 or 4 more days. She has

> > > continued this pattern for over a month now. She is constipated for

> > > several days and then vomiting with diarrhea for several days.

> > > She's ended up in the hospital twice now this time, and it is a

> > > weekly struggle to keep her out.

> > >

> > > She has two great pediatricians that are working together to find out

> > > what is wrong. She also has a pretty good GI doctor. She has had an

> > > upper GI, an endoscope, urine tests, lots of blood tests, x-rays, ect.

> > > They have not been able to diagnose.

> > >

> > > Then about two weeks ago a nurse saw Brooklyns BM's. Not the

> > > constipated kind, but the diarrhea kind that is really pale and

> > > smells soooo bad that you really almost get sick when changing her.

> > > She immediatley said that it had the CF look and smell.

> > >

> > > Now her Pediatricians (well one of them, Dr. Boger wasn't in last

> > > visit) are pretty conviced she has CF (or is at least afraid it may

> > > be). Last Tuesday they tried to do a blood test, but could not get

> > > any blood (her veins kept " blowing " ). So they ended up doing a cheek

> > > swab. They also asked for a stool sample. It took 5 days for her to

> > > have a BM, but I took it in. They are measuring the fat content. It

> > > was not a " bad " BM. It was brown and streaked with blood. I am not

> > > sure if that will show the same results as the other BM's.

> > >

> > > Anyway, I am really sorry that this is so long. I am really worried

> > > and have not been able to eat or sleep for quite some time (at least

> > > I am losing weight). If anyone can think of anything else this could

> > > be please let me know.

> > >

> > > Also, do you think I should call and ask why we have not had a sweat

> > > test done. It seems strange after what I've read on-line, but then

> > > I'm a Kindergarten teacher, not a doctor.

> > >

> > > Thanks Again,

> > > Christy

> > > Mother to Brooklyn (18 mon) and (6 yrs)

> > >

> > > 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.

> > >

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

> > >

October 10, 2001

Christy, keep up that mother's intuition!

n Rojas

October 10, 2001

(((HUGS))) Everyone has offered great advice. We too, sought a diagnosis for

several months before I *demanded* a sweat test. My ped said " didn't

look like a failure to thrive baby " since he was so chubby (but TINY all

over). Even though his stools were pale green and he was pooping out orange

oil. He had no respiratory symptoms.

Our sweat test was back in under 24 hours (actually the doc called us 6

hours after it was done to make an appt to come in the next morning to

discuss the results...ugh that was gut-wrenching...we " knew " what was coming

but were still in denial) while his Genzyme test took 2 weeks. So if you

can't stand the waiting, you *can* demand a sweat test. Just tell them you

are worried sick and want to just rule it out so you know for sure. We had

to go to the hospital for ours, but it's easy (they just wear armbands for a

few minutes), noninvasive and only takes 1/2 hr.

(((HUGS))) again. I sure hope it isn't CF, but if it is, it's not the end of

the world, it only seems like it for a while. My son was diagnosed in July

of this year. I feel like I'm already coming out the other side and am

coping pretty well with everything...and there is so much hope these days,

as Bev so eloquently said, not just for the " miracle cure " but also for

better and better treatments and knowledge.

mama to 1 yo w/CF and 3 yo woCF

October 10, 2001

Christy -

My heart gores out to you. I hope they have results for you soon. If she

really looks that bad, maybe you should consider taking her in to another

doctor. The big tummy concerns me a bit. My son had a really big tummy

once, and his bowel was blocked. I don't tell you this to scare you, but it

could be serious if it perforates. Has she been pooping? Boy, I wish we

had more for you. Just try to hang in there, but if she's really not well,

you should insist she be seen, and maybe by soneone else. If it's not CF,

and she is this bad, what else are they doing for her? Just waiting?

Melinda - mom to RYan 2.5 wcf and sister 25 wcf

Re: Waiting to know

Jane,

I called just today to ask why they did not do a sweat test. The nurse

told me that they used to do them, but that they were " old fashioned " and

they had moved on. I told her that from what I had read, that most people

did it first still. She told me to stop reading junk and that I was scaring

myself. She also said that she was not worried and that everything would be

O.K. I told her that even though Brooklyn had gone for several days without

vomiting she still looks bad and that her tummy was so big and the circles

under her eyes were so dark that I was still really worried. She said to

relax and she would call me with the negative result when it came in. Maybe

I am just over reacting, but she seems to look so bad and my mommy instinct

is at full alert! Thanks Again.

Christy

>

> Hi Christy,

> Welcome to the list. You are in my thoughts as you wait a diagnosis.

Protocol

> at our hospital is to start with a sweat test and then move on to the

genetics.

> However could it be that there is no lab that does the sweats in your

area?

> They can send off the blood/swabs elsewhere but they need to have a

trained

> technician on site to do the sweat.

> We are also waiting on results for our daughter. It is a tough time, I

know,

> but dealing with each problem one step at a time helps and then deal

with the