Re: 10 year old has pseudamonas

[Guest guest]

How did they determine he didn't have CF? Unless they did a genetic

test, they can't say with any certainty if he does or does not have it.

I have heard case upon case of people diagnosed at many different ages-

some into the teens and beyond.

Elias

10 year old has pseudamonas

My 10 year old has tested positive for Pseudamonas. We were told 5

years ago that he doesnt have CF. He does have most of the

symptons. He appears to be growing normally. He does have lots of

lung problems and lots of sinusitis.

My question is does any have a child that was diagnoised older. My

research tells me it is usually caught when they are little.

Mrssbeaz

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[Guest guest]

> My 10 year old has tested positive for Pseudamonas. We were told 5

> years ago that he doesnt have CF. He does have most of the

> symptons. He appears to be growing normally. He does have lots of

> lung problems and lots of sinusitis.

>

> My question is does any have a child that was diagnoised older. My

> research tells me it is usually caught when they are little.

>

> Mrssbeaz

I am sure you will have a ton of responses but I think you already

know your answer or you wouldn't have been posting here. Insist on

having genetic testing done to make a confirmation. You need to have

him followed up by a CF doctor. There are mutations out there which

have never been found. CF can be made based on clinical finding as

well as sweat test results.

My son was diagnosed last year right before his 8th birthday. His

sweat tests were inconclusive. Genetic testing found the mutations,

one of which is rare, and is characterized by having low sweat tests

values. Believe it or not, 10% of CF patients are not diagnosed until

they are older than 8. Insist on testing. How are they going to treat

the PA?

Sending you {{hugs}} because I know this is scaring you to death

jan

[Guest guest]

In a message dated 1/14/2004 4:08:54 PM Central Standard Time,

mrssbeaz2002@... writes:

My 10 year old has tested positive for Pseudamonas. We were told 5

years ago that he doesnt have CF. He does have most of the

symptons. He appears to be growing normally. He does have lots of

lung problems and lots of sinusitis.

My question is does any have a child that was diagnoised older. My

research tells me it is usually caught when they are little.

Mrssbeaz

My oldest was 6 when she was diagnosed. Deb A

[Guest guest]

Many, many with cystic fibrosis are not diagnosed until they are in their

thirties, forties, fifties, and in two whom I personally know, at the ages

of 60 and 61. I was fortunate and was diagnosed at birth, despite my age.

My own first cf doctor told me that he surmised that if he could test ever

child, adolescent, adult and senior citizen in every asthma, allergy, pulmo

nology clinic, practice or university facitlity in the nation that the number

of persons who genuinely have cystic fibrosis would be more that 20 times

what we are so often told. These people are treated for serious illness, but

the treatment falls short and lives are lost amongst them as well as amongst

us who have been diagnosed with cystic fibrosis. My gastroenterologist

feels the same way, but would throw his specialty into the mix, too!

I hope that this helps, n Rojas, who is happy to see that many states

are now doing at least some screening at birth and again at age two years

where it appears indicated.

Re: 10 year old has pseudamonas

In a message dated 1/14/2004 4:08:54 PM Central Standard Time,

mrssbeaz2002@... writes:

My 10 year old has tested positive for Pseudamonas. We were told 5

years ago that he doesnt have CF. He does have most of the

symptons. He appears to be growing normally. He does have lots of

lung problems and lots of sinusitis.

My question is does any have a child that was diagnoised older. My

research tells me it is usually caught when they are little.

Mrssbeaz

My oldest was 6 when she was diagnosed. Deb A

[Guest guest]

Please consider this as my personal answer to your question about not

being diagnosed with CF early and still surviving. I was diagnosed at

age 28 and my sister was diagnosed soon afterwards at age 20 at Boston

Children's Hospital. In our early years we were fortunately treated for

our symptoms by the same specialists who knew a lot about the specifics

of the causes of each problem. When we were older we had different

doctors as we lived in different cities but we went to Boston for the

tests that diagnosed CF. In my sister's case, her non CF doctors argued

against the diagnosis of CF confusing her, her husband of one year, and

my parents. Her doctors were pompous and misinformed and argued among

themselves. She died six weeks after having a pre mature baby which was

five months after the CF diagnosis. It was obviously the wrong time for

a conflict in making decisions in regards her treatments. I don't know

if she would have survived, but her medical care would have been focused

by a CF doctor who would have had the advantage of knowing what

treatments would be more suitable for someone with CF. It could have

prevented the family discord that ensued. The coordination of medical

care can be more comprehensive when facts are known after an early

diagnosis is made. We should also consider that a late diagnosis allows

doctors to study why the patient survived. We will never know how many

who weren't diagnosed didn't survive. Hal

Re: 10 year old has pseudamonas

Many, many with cystic fibrosis are not diagnosed until they are in

their

thirties, forties, fifties, and in two whom I personally know, at the

ages

of 60 and 61. I was fortunate and was diagnosed at birth, despite my

age.

My own first cf doctor told me that he surmised that if he could test

ever

child, adolescent, adult and senior citizen in every asthma, allergy,

pulmo

nology clinic, practice or university facitlity in the nation that the

number

of persons who genuinely have cystic fibrosis would be more that 20

times

what we are so often told. These people are treated for serious

illness, but

the treatment falls short and lives are lost amongst them as well as

amongst

us who have been diagnosed with cystic fibrosis. My gastroenterologist

feels the same way, but would throw his specialty into the mix, too!

I hope that this helps, n Rojas, who is happy to see that many

states

are now doing at least some screening at birth and again at age two

years

where it appears indicated.

Re: 10 year old has pseudamonas

In a message dated 1/14/2004 4:08:54 PM Central Standard Time,

mrssbeaz2002@... writes:

My 10 year old has tested positive for Pseudamonas. We were told 5

years ago that he doesnt have CF. He does have most of the

symptons. He appears to be growing normally. He does have lots of

lung problems and lots of sinusitis.

My question is does any have a child that was diagnoised older. My

research tells me it is usually caught when they are little.

Mrssbeaz

My oldest was 6 when she was diagnosed. Deb A

[Guest guest]

I am so sorry Hal. Can I ask, did she die from complications from CF or

from the pregnancy? If I am offending you or her memory in any way,

please forgive me and disregard my question.

Cheryl

Re: 10 year old has pseudamonas

Many, many with cystic fibrosis are not diagnosed until they are in

their

thirties, forties, fifties, and in two whom I personally know, at the

ages

of 60 and 61. I was fortunate and was diagnosed at birth, despite my

age.

My own first cf doctor told me that he surmised that if he could test

ever

child, adolescent, adult and senior citizen in every asthma, allergy,

pulmo

nology clinic, practice or university facitlity in the nation that the

number

of persons who genuinely have cystic fibrosis would be more that 20

times

what we are so often told. These people are treated for serious

illness, but

the treatment falls short and lives are lost amongst them as well as

amongst

us who have been diagnosed with cystic fibrosis. My gastroenterologist

feels the same way, but would throw his specialty into the mix, too!

I hope that this helps, n Rojas, who is happy to see that many

states

are now doing at least some screening at birth and again at age two

years

where it appears indicated.

Re: 10 year old has pseudamonas

In a message dated 1/14/2004 4:08:54 PM Central Standard Time,

mrssbeaz2002@... writes:

My 10 year old has tested positive for Pseudamonas. We were told 5

years ago that he doesnt have CF. He does have most of the

symptons. He appears to be growing normally. He does have lots of

lung problems and lots of sinusitis.

My question is does any have a child that was diagnoised older. My

research tells me it is usually caught when they are little.

Mrssbeaz

My oldest was 6 when she was diagnosed. Deb A

[Guest guest]

My oldest was 8 years old when diagnosed

meg

mom of 3

2wcf

Quoting n Rojas :

> Many, many with cystic fibrosis are not diagnosed until they are in

> their

> thirties, forties, fifties, and in two whom I personally know, at the

> ages

> of 60 and 61. I was fortunate and was diagnosed at birth, despite my

> age.

> My own first cf doctor told me that he surmised that if he could test

> ever

> child, adolescent, adult and senior citizen in every asthma, allergy,

> pulmo

> nology clinic, practice or university facitlity in the nation that

> the number

> of persons who genuinely have cystic fibrosis would be more that 20

> times

> what we are so often told. These people are treated for serious

> illness, but

> the treatment falls short and lives are lost amongst them as well as

> amongst

> us who have been diagnosed with cystic fibrosis. My

> gastroenterologist

> feels the same way, but would throw his specialty into the mix, too!

> I hope that this helps, n Rojas, who is happy to see that many

> states

> are now doing at least some screening at birth and again at age two

> years

> where it appears indicated.

> Re: 10 year old has pseudamonas

>

>

> In a message dated 1/14/2004 4:08:54 PM Central Standard Time,

> mrssbeaz2002@... writes:

> My 10 year old has tested positive for Pseudamonas. We were told 5

> years ago that he doesnt have CF. He does have most of the

> symptons. He appears to be growing normally. He does have lots of

> lung problems and lots of sinusitis.

>

> My question is does any have a child that was diagnoised older. My

> research tells me it is usually caught when they are little.

>

> Mrssbeaz

> My oldest was 6 when she was diagnosed. Deb A

>

>

>

[Guest guest]

Hi_

My son had pseudomonas when he was ten yrs old. The docs treated

him with tobi and cipro and he hasn't cultured for it since(knock on

wood).

Jordan has been tested for CF a number of times-most recently last

year with a blood test which came back negative. They also retested

him for PCD which confirmed his diagnoses from Mayo clinic. He has

lung, sinus and ear issues and a lobectomy at the age of 8 yrs old.

So if CF is negative a possibility may be PCD as they look alot

alike.

Thank you for your responses regarding school accomadations.

Kay/MN

> My oldest was 8 years old when diagnosed

> meg

> mom of 3

> 2wcf

> Quoting n Rojas <Rojas5915@C...>:

>

> > Many, many with cystic fibrosis are not diagnosed until they are

in

> > their

> > thirties, forties, fifties, and in two whom I personally know,

at the

> > ages

> > of 60 and 61. I was fortunate and was diagnosed at birth,

despite my

> > age.

> > My own first cf doctor told me that he surmised that if he could

test

> > ever

> > child, adolescent, adult and senior citizen in every asthma,

allergy,

> > pulmo

> > nology clinic, practice or university facitlity in the nation

that

> > the number

> > of persons who genuinely have cystic fibrosis would be more that

20

> > times

> > what we are so often told. These people are treated for serious

> > illness, but

> > the treatment falls short and lives are lost amongst them as

well as

> > amongst

> > us who have been diagnosed with cystic fibrosis. My

> > gastroenterologist

> > feels the same way, but would throw his specialty into the mix,

too!

> > I hope that this helps, n Rojas, who is happy to see that

many

> > states

> > are now doing at least some screening at birth and again at age

two

> > years

> > where it appears indicated.

> > Re: 10 year old has pseudamonas

> >

> >

> > In a message dated 1/14/2004 4:08:54 PM Central Standard Time,

> > mrssbeaz2002@y... writes:

> > My 10 year old has tested positive for Pseudamonas. We were

told 5

> > years ago that he doesnt have CF. He does have most of the

> > symptons. He appears to be growing normally. He does have

lots of

> > lung problems and lots of sinusitis.

> >

> > My question is does any have a child that was diagnoised

older. My

> > research tells me it is usually caught when they are little.

> >

> > Mrssbeaz

> > My oldest was 6 when she was diagnosed. Deb A

> >

> >

> >

[Guest guest]

Kay,

You are the only other person that I have met, whose child has had a

lobectomy. Abby had her upper right lobe removed at six month age.

It was a really scary time, but seems to have paid off. She has not

had phnumonia since the surgery. Her FEV1 is only ~80%. I am told

that this is do to the lobectomy.

Gale, Grandma to Abby 2yo wcf

> > My oldest was 8 years old when diagnosed

> > meg

> > mom of 3

> > 2wcf

> > Quoting n Rojas <Rojas5915@C...>:

> >

> > > Many, many with cystic fibrosis are not diagnosed until they

are

> in

> > > their

> > > thirties, forties, fifties, and in two whom I personally know,

> at the

> > > ages

> > > of 60 and 61. I was fortunate and was diagnosed at birth,

> despite my

> > > age.

> > > My own first cf doctor told me that he surmised that if he

could

> test

> > > ever

> > > child, adolescent, adult and senior citizen in every asthma,

> allergy,

> > > pulmo

> > > nology clinic, practice or university facitlity in the nation

> that

> > > the number

> > > of persons who genuinely have cystic fibrosis would be more

that

> 20

> > > times

> > > what we are so often told. These people are treated for serious

> > > illness, but

> > > the treatment falls short and lives are lost amongst them as

> well as

> > > amongst

> > > us who have been diagnosed with cystic fibrosis. My

> > > gastroenterologist

> > > feels the same way, but would throw his specialty into the mix,

> too!

> > > I hope that this helps, n Rojas, who is happy to see that

> many

> > > states

> > > are now doing at least some screening at birth and again at age

> two

> > > years

> > > where it appears indicated.

> > > Re: 10 year old has pseudamonas

> > >

> > >

> > > In a message dated 1/14/2004 4:08:54 PM Central Standard Time,

> > > mrssbeaz2002@y... writes:

> > > My 10 year old has tested positive for Pseudamonas. We were

> told 5

> > > years ago that he doesnt have CF. He does have most of the

> > > symptons. He appears to be growing normally. He does have

> lots of

> > > lung problems and lots of sinusitis.

> > >

> > > My question is does any have a child that was diagnoised

> older. My

> > > research tells me it is usually caught when they are little.

> > >

> > > Mrssbeaz

> > > My oldest was 6 when she was diagnosed. Deb A

> > >

> > >

> > >