Re: Hope I'm not intruding

[Guest guest]

,

My daughter, Piper, was diagnosed at 4 months of age. She is now 13 months old,

but her symptoms were all GI related, but I knew that there was something else

going on. Remember you are her mom, go with your gut on this one. Request a

sweat test first, and go from there. I hope this helps.

Katy

Mom to Austin 4 no CF & Piper 1 w/CF

[Guest guest]

,

You are not intruding at all. I am sorry to hear about your

daughters troubles. My son is 7 months old and the way we found out

with him was that before I had him we found out that he had meconium

illius. This if you did not know if a backup in the intestines to put

in short version. Anyways we knew that he was sick so when he was born

he had a surgery 2 days later and ended up having meconium peritinitis.

This is where the bowel actually ruptures releasing the meconium out

into abd. cavity. Anyways I guess that with a huge percentage of these

babies it is CF. They did a sweat test ( actually 2 it takes two for a

+ diagnosis. He aslo had a genetic test done. Ambry genetics is the

lab. This is the best genetic test for CF it checks for over 1000 of

the known mutaions. There is another Genotype, I believe is the name

and it only checks for 27. If you are wanting to get this done our CF

doc recommends Ambry. Actually I have a 5 year old Maxwel who is very

symtomatic of CF as well and has had two negative sweat tests but as you

may hear there are families in this group who have or know people who

end up having CF after they proceed with genetics testing.

With the Sweat test I believe that anything higher than a 60 count

is considered positive. I may be wrong with that number. My sons was

108. I was talking with ne doc about concerns of my oldest and he told

me a story of a teen who was his patient with a count of 3 on sweat

test, but with further tests he was CF.

I am sorry that this was so long winded. I am just going through

all of this resently and again possibly with my Maxwel. I am sorry if

not exact on that number ( 60 ) I am sure there are many in here who

will correct me if so. I sure hope that your daughter does not have it,

but if she does you ought to remember this group there are so many

amazing people here that know so much about just about anything you can

think of.

Best of luck to you

Ashaun mom to 2 boys Maxwel 5 still testing and Colgan 7 months with CF

[Guest guest]

My daughter was 3 weeks old, but some are older.

(Australia)

Hope I'm not intruding

I tried to post this before, but for some reason it didn't show up on

the board, so if this is a double post I'm sorry. I hope I'm not

intruding on this group. My daught has not been diagnosed with CF

yet, but my husband and I suspect she has it. She was hospitalized

with RSV when she was 4 months old and then again 2 weeks later with

viral pneumonia. She had RSV for 2 months before her dr. put her in

the hospital. She has had repiratory problems ever since then. Her

dr. diagnosed her with asthma. I was doing research on the internet

the other night and noticed that she has several sympotms of CF. She

is small for her age, she is in the 25th percentile in height and

10th in weight. She has had alot of loose stools, like weeks at a

time, that I have always chalked up to teething. She is now 20

months old. We have a new family dr. due to insurance change. I was

just wondering how old your children were when they were diagnosed

with CF and how you knew they had it. Sorry this is so long. Thanks

in advance for advice.

[Guest guest]

Hi there. AND YOU ARE NEVER INTRUDING......ALL are welcome & there is no

such thing as that here. PRIVATE posts are sent to a person, if it is a

personal post So ....intrude away. WE love it!! My granddaughter was DX at 2

DAYS old . But she had a blockage(mecomium iliues & needed surgery , so it

was easier to tell ...Some are not until they are much older--6--9-- 15--30

yrs. , etc. It really is getting better as there are more types of testing

too. You are ahead of the game , so that will really help in the medical

care & treatments for your precious one.

WRITE any time . Best wishes to you & your family

LOVE & HUGS,

GRandmomBEv

Hope I'm not intruding

I tried to post this before, but for some reason it didn't show up on

the board, so if this is a double post I'm sorry. I hope I'm not

intruding on this group. My daught has not been diagnosed with CF

yet, but my husband and I suspect she has it. She was hospitalized

with RSV when she was 4 months old and then again 2 weeks later with

viral pneumonia. She had RSV for 2 months before her dr. put her in

the hospital. She has had repiratory problems ever since then. Her

dr. diagnosed her with asthma. I was doing research on the internet

the other night and noticed that she has several sympotms of CF. She

is small for her age, she is in the 25th percentile in height and

10th in weight. She has had alot of loose stools, like weeks at a

time, that I have always chalked up to teething. She is now 20

months old. We have a new family dr. due to insurance change. I was

just wondering how old your children were when they were diagnosed

with CF and how you knew they had it. Sorry this is so long. Thanks

in advance for advice.

[Guest guest]

Hi ! You're not intruding at all!

I would insist on a sweat test for your daughter. It's definitely worth

doing.

is almost 3 years old now. He was diagnosed at 10 months. It would

have been longer except that I read up on the Internet and it sounded

like he had CF so I pushed for the sweat test.

His symptoms were all digestive - no lung stuff. He went from the 50th

percentile down to the 5th or less in 4 months, had 10-12 bowel

movements a day with oil droplets in them, and became pale, with puffy

cheeks, lethargic, bruised easily, and lost appetite (especially the

last few weeks before diagnosis, it was scary - his electrolytes were

quite imbalanced). His lungs at that point, though, were perfect, and

he'd never coughed even once or had any sort of respiratory infection.

)O(

mama to , 2yo, w/CF, and , 4yo, no CF

Hope I'm not intruding

I tried to post this before, but for some reason it didn't show up on

the board, so if this is a double post I'm sorry. I hope I'm not

intruding on this group. My daught has not been diagnosed with CF

yet, but my husband and I suspect she has it. She was hospitalized

with RSV when she was 4 months old and then again 2 weeks later with

viral pneumonia. She had RSV for 2 months before her dr. put her in

the hospital. She has had repiratory problems ever since then. Her

dr. diagnosed her with asthma. I was doing research on the internet

the other night and noticed that she has several sympotms of CF. She

is small for her age, she is in the 25th percentile in height and

10th in weight. She has had alot of loose stools, like weeks at a

time, that I have always chalked up to teething. She is now 20

months old. We have a new family dr. due to insurance change. I was

just wondering how old your children were when they were diagnosed

with CF and how you knew they had it. Sorry this is so long. Thanks

in advance for advice.

[Guest guest]

HI ELIZABETH

MY NAME IS KAREN MY SON CODY WAS DIAGNOSED AT 4 WEEKS. HE DID NOT HAVE ANY

SIGNS. NO BLOCKAGES. HE DID HAVE A LOT OF STOOLS, HOWEVER WHEN YOU ARE A FIRST

TIME MOM YOU DON'T KNOW ANY DIFFERENT. ACCUALLY MY PEDIATRICIAN ORDERED THE

TEST TO BE DONE BECAUSE HE HAD 4 OTHER PATIENTS IN HIS OFFICE WITH CF. SO HE

MADE IT MANDITORY IN HIS PRACTICE, THANK GOODNESS. CODY HAD THE MOST COMMON

GENE MUTATION SO IT WAS NOT HARD TO FIND. I REALLY BELIEVE THAT THE EARLIER THE

DIAGNOSIS THE FASTER THE TREATMENTS ARE STARTED, THE BETTER CHANCE YOU GIVE YOUR

CHILD. CODY IS NOW 16 MONTHS OLD HAS HAD NO LUNG ISSUES, NEVER EVEN HAD A COLD,

WEIGHS IN AT 24 1/2 POUNDS. HOPE THAT THE TEST IS NEGATIVE, BUT KNOW THAT WE ARE

HERE WITH YOU.

LOTS OF LOVE,

KAREN

CODY 16 MONTHS OLD W/CF

G. A A Hope I'm not intruding

I tried to post this before, but for some reason it didn't show up on

the board, so if this is a double post I'm sorry. I hope I'm not

intruding on this group. My daught has not been diagnosed with CF

yet, but my husband and I suspect she has it. She was hospitalized

with RSV when she was 4 months old and then again 2 weeks later with

viral pneumonia. She had RSV for 2 months before her dr. put her in

the hospital. She has had repiratory problems ever since then. Her

dr. diagnosed her with asthma. I was doing research on the internet

the other night and noticed that she has several sympotms of CF. She

is small for her age, she is in the 25th percentile in height and

10th in weight. She has had alot of loose stools, like weeks at a

time, that I have always chalked up to teething. She is now 20

months old. We have a new family dr. due to insurance change. I was

just wondering how old your children were when they were diagnosed

with CF and how you knew they had it. Sorry this is so long. Thanks

in advance for advice.

[Guest guest]

Hi ,

First of all...welcome! Everyone here is very nice and supportive.

Also, I agree with parent's intuition. If you feel something is not

quite right do not hesitate to talk with your doctor or other

medical personnel.

About RSV. I am a Resp. Therapist, although no longer practicing

(except on my daughter LOL) RSV is a VERY NASTY virus that can

cause all sorts of problems in infants. You and I would only

experience " cold symptoms " , if we caught this bug, but not so with

babies. This is the virus is responsible for triggering childhood

asthma/restrictive lung disease in many, many infants. I believe

your doctor is probably right on about the initial asthma

diagnosis. That does not preclude a CF diagnosis, however. Go with

your gut on this one. I hope you find the answers you are looking

for.

All my best,

Polly: mom to Bethany, still in diagnostice limbo (heterozygote for

CF...1st visit to the CF clinic for consultation next week)

> I kind of feel like I'm intruding in this group, but I have a

> question. My daughter has not been diagnosed with CF, but my

husband

> and I suspect that she might have it. She was put in the hospital

at

> 4 months old with RSV and then again 2 weeks later with viral

> pnuemonia. Her doctor actually said she had RSV 2 months before

she

> was put in the hospital.She has had pretty constant respiratory

> problems since then. Her doctor diagnosed her with asthma. She

has

> been on breathing treatments, but they don't seem to do much

good. I

> was doing research on CF on the internet and I noticed that she

has

> several of the symptoms. She is not excessivly small for her age,

> but she is in the 25th percentile in height and 10th in weight.

She

> has a lot of loose stools that I have always chalked up to

teething.

> She is now 20 months old and we have a new family doctor. I am

> afraid that everyone may be overlooking the big picture and

> diagnosing her with asthma when she has several symptoms of CF. I

> was really wondering when and how your children were diagnosed

with

> CF and how you knew they had it. Sorry this was so long.

[Guest guest]

I do also believe as you do .I do know that is not always the case.

Sometimes , they just fall thru the cracks , especially if they APPEAR very

healthy & have no extreme symptoms. Those are usually hidden or called

" normal " childhood, etc. Asthma is almost always the blame if it is

respiratory . Now if all Peds would

test ( hospitals too), I think as you do, many more would be DX AND get

better care earlier. It isn't the parents fault. If we could go on all news,

etc & get them to have to be tested. that would help the patients &

parents. THERE IS ONE PROBLEM...........

the insurance companies would then have the pre-existing thing they wave at

us & wont pay. So, that is a problem that all of us should also get busy

changing.

Gosh, id better get off here & start all these things " we " are supposed to

do. :)

OH, one thing.....I do think that our CF AWARENESS WEEK in OCT will help

some in getting folks to sit up & hear us ...

My " special " thoughts to you & yours .

LOVE & HUGS< GRANDMOMBEV

Re: Hope I'm not intruding

HI ELIZABETH

MY NAME IS KAREN MY SON CODY WAS DIAGNOSED AT 4 WEEKS. HE DID NOT HAVE ANY

SIGNS. NO BLOCKAGES. HE DID HAVE A LOT OF STOOLS, HOWEVER WHEN YOU ARE A

FIRST TIME MOM YOU DON'T KNOW ANY DIFFERENT. ACCUALLY MY PEDIATRICIAN

ORDERED THE TEST TO BE DONE BECAUSE HE HAD 4 OTHER PATIENTS IN HIS OFFICE

WITH CF. SO HE MADE IT MANDITORY IN HIS PRACTICE, THANK GOODNESS. CODY HAD

THE MOST COMMON GENE MUTATION SO IT WAS NOT HARD TO FIND. I REALLY BELIEVE

THAT THE EARLIER THE DIAGNOSIS THE FASTER THE TREATMENTS ARE STARTED, THE

BETTER CHANCE YOU GIVE YOUR CHILD. CODY IS NOW 16 MONTHS OLD HAS HAD NO

LUNG ISSUES, NEVER EVEN HAD A COLD, WEIGHS IN AT 24 1/2 POUNDS. HOPE THAT

THE TEST IS NEGATIVE, BUT KNOW THAT WE ARE HERE WITH YOU.

LOTS OF LOVE,

KAREN

CODY 16 MONTHS OLD W/CF

G. A A Hope I'm not intruding

I tried to post this before, but for some reason it didn't show up on

the board, so if this is a double post I'm sorry. I hope I'm not

intruding on this group. My daught has not been diagnosed with CF

yet, but my husband and I suspect she has it. She was hospitalized

with RSV when she was 4 months old and then again 2 weeks later with

viral pneumonia. She had RSV for 2 months before her dr. put her in

the hospital. She has had repiratory problems ever since then. Her

dr. diagnosed her with asthma. I was doing research on the internet

the other night and noticed that she has several sympotms of CF. She

is small for her age, she is in the 25th percentile in height and

10th in weight. She has had alot of loose stools, like weeks at a

time, that I have always chalked up to teething. She is now 20

months old. We have a new family dr. due to insurance change. I was

just wondering how old your children were when they were diagnosed

with CF and how you knew they had it. Sorry this is so long. Thanks

in advance for advice.

[Guest guest]

You are not intruding at all! The first step is to request a sweat test. DNA

testing is also beneficial-not all of the possible mutations are mapped yet but

many are. Bring it up to the new Doc. Don't let it go. The sooner you get a

diagnosis (CF or otherwise) you can treat your daughter properly. Good luck and

I hope it is not CF. Feel free to check out our site at

http://groups.msn.com/teamJane

Mom of , 4 & 1/2 with CF

Hope I'm not intruding

I kind of feel like I'm intruding in this group, but I have a

question. My daughter has not been diagnosed with CF, but my husband

and I suspect that she might have it. She was put in the hospital at

4 months old with RSV and then again 2 weeks later with viral

pnuemonia. Her doctor actually said she had RSV 2 months before she

was put in the hospital.She has had pretty constant respiratory

problems since then. Her doctor diagnosed her with asthma. She has

been on breathing treatments, but they don't seem to do much good. I

was doing research on CF on the internet and I noticed that she has

several of the symptoms. She is not excessivly small for her age,

but she is in the 25th percentile in height and 10th in weight. She

has a lot of loose stools that I have always chalked up to teething.

She is now 20 months old and we have a new family doctor. I am

afraid that everyone may be overlooking the big picture and

diagnosing her with asthma when she has several symptoms of CF. I

was really wondering when and how your children were diagnosed with

CF and how you knew they had it. Sorry this was so long.

[Guest guest]

You should definately push for CF testing. Either sweat test or DNA

testing. If the sweat test is inconclusive, ask that it be done at

a CF care center that has a lot of experience with sweat tests. A

DNA test can also determine if your baby has cf. Some rare

mutations have not been discovered, but the DNA test can diagnose

most cases.

If your doctors feel it is unnecessary to do cf testing consider our

story.

We do not have any history of CF in our family. Our son is 10th

percentile for weight and 25th percentile for height. Our

pediatrician said she could tell by looking that Zach did not have

CF. We had him DNA tested at 13 months old and the doctor was

wrong. He also had a lot of loose stool that were yellow and oily

at times. He also had problems with reflux. Zach did not have any

lung problems and was not failure to thrive, but he still had cf.

On the positive side, Zach now has enzymes to help him digest his

food and is making some progress. If your baby has cf there are

special medicines that could quickly improve her health.

I really hope that your baby does not have cf and your time spent on

this list is short, but if not, know that we are all here to help.

Sara - mommy to Zach 18 months wcf

> I kind of feel like I'm intruding in this group, but I have a

> question. My daughter has not been diagnosed with CF, but my

husband

> and I suspect that she might have it. She was put in the hospital

at

> 4 months old with RSV and then again 2 weeks later with viral

> pnuemonia. Her doctor actually said she had RSV 2 months before

she

> was put in the hospital.She has had pretty constant respiratory

> problems since then. Her doctor diagnosed her with asthma. She

has

> been on breathing treatments, but they don't seem to do much

good. I

> was doing research on CF on the internet and I noticed that she

has

> several of the symptoms. She is not excessivly small for her age,

> but she is in the 25th percentile in height and 10th in weight.

She

> has a lot of loose stools that I have always chalked up to

teething.

> She is now 20 months old and we have a new family doctor. I am

> afraid that everyone may be overlooking the big picture and

> diagnosing her with asthma when she has several symptoms of CF. I

> was really wondering when and how your children were diagnosed

with

> CF and how you knew they had it. Sorry this was so long.

[Guest guest]

Hi . Sorry to hear of your struggles. Our daughter,

Mikayla, was diagnosed when I was 20 weeks pregnant with her. We

flippantly decided to do a blood draw on me to see if I was a

carrier. We have no CF anywhere in our families that we know of,

but during routine genetic counseling for an amnio, they talked

about CF as a risk factor for causasions. We firmly believe that

knowing so early saved our daughters life. She was delivered 2

months early because her bowels were blocked.

[Guest guest]

Please know that you are welcome here. The more everyone knows about

CF, the better for all of us.

CF is the leading birth defect of it's severity and yet it is so

often over looked by physicians. I don't understand why. My grand

daughter was in the hospital for pnuemonia twice by the time she was

3 months old and it wasn't until she had spent a total of almost 4

weeks in the hospital (in the infectious desease ward) before they

finally did the sweat test, which she failed miserably. It's such an

easy test to do. Makes no sense.

I hope that your child does not have CF, but that you get answers

very soon. It's so hard to have a sick child and no explanation.

Please keep us posted,

Gale

> I kind of feel like I'm intruding in this group, but I have a

> question. My daughter has not been diagnosed with CF, but my

husband

> and I suspect that she might have it. She was put in the hospital

at

> 4 months old with RSV and then again 2 weeks later with viral

> pnuemonia. Her doctor actually said she had RSV 2 months before

she

> was put in the hospital.She has had pretty constant respiratory

> problems since then. Her doctor diagnosed her with asthma. She

has

> been on breathing treatments, but they don't seem to do much good.

I

> was doing research on CF on the internet and I noticed that she has

> several of the symptoms. She is not excessivly small for her age,

> but she is in the 25th percentile in height and 10th in weight.

She

> has a lot of loose stools that I have always chalked up to

teething.

> She is now 20 months old and we have a new family doctor. I am

> afraid that everyone may be overlooking the big picture and

> diagnosing her with asthma when she has several symptoms of CF. I

> was really wondering when and how your children were diagnosed with

> CF and how you knew they had it. Sorry this was so long.

[Guest guest]

Welcome, ! And no--never, ever feel as though you are intruding on

our group. I have gotten quite far behind in my e-mail due to a busy life

lately, but wanted to still welcome you, and offer you my best wishes for

your daughter. Although none of us like to see a new little one diagnosed,

we also are happy when they finally are, as it is finally an answer for

parents who have been struggling for so long, and it is a blessing for the

child as they can finally get the health care they need. Best of luck to

you!

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

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

Hope I'm not intruding

> I kind of feel like I'm intruding in this group, but I have a

> question. My daughter has not been diagnosed with CF, but my husband

> and I suspect that she might have it. She was put in the hospital at

> 4 months old with RSV and then again 2 weeks later with viral

> pnuemonia. Her doctor actually said she had RSV 2 months before she

> was put in the hospital.She has had pretty constant respiratory

> problems since then. Her doctor diagnosed her with asthma. She has

> been on breathing treatments, but they don't seem to do much good. I

> was doing research on CF on the internet and I noticed that she has

> several of the symptoms. She is not excessivly small for her age,

> but she is in the 25th percentile in height and 10th in weight. She

> has a lot of loose stools that I have always chalked up to teething.

> She is now 20 months old and we have a new family doctor. I am

> afraid that everyone may be overlooking the big picture and

> diagnosing her with asthma when she has several symptoms of CF. I

> was really wondering when and how your children were diagnosed with

> CF and how you knew they had it. Sorry this was so long.

>

>

>

>

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

> 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.

>

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

>

>

>