Re: Re:new to list - have questions- doctor appt tommorrow

[Guest guest]

Most people with CF don't look sick at all. Our CF doctor even made the

comment that by looking at Scout you would never guess she has CF. I would

definitely push for more testing to get a diagnosis. There is another test -

more accurate than blood tests or the sweat test but fewer places offer it.

It is called a nasal PD. on this list had to have her daughter

diagnosed that way - her sweat test was consistently negative.

Good Luck

Lori

mom to Scout 19 mo wCF

Re:new to list - have questions- doctor appt tommorrow

> Hi

> My name is Jo and my baby is Rose. Her teacher, wrote to

the

> list

> last week while we were in the hospital.

> They re did 's sweat test on Thursday and she is still in the gray

area.

> She had a 45

> I go to the pulmonary doctor tomorrow morning. If he just dismisses this

> because it is in the gray area, should I ask for more test? Someone

mentioned

> a blood test that shows 900 mutations. Can you please give me the list of

> test I should ask for.

> I don't want to just ignore this because she does chronic lung problems

but

> she also was a 24 weeker and had BPD and needed a nebulizor. This time

when

> she got sick we gave her zitromax but she did not get better her pneumonia

> got worse, even once in the hospital and on a stronger antibiotic through

the

> IV after a few days her pneumonia worsened, then they started giving her

two

> antibiotics at the same time, then it got better.

> She was on oxygen in the hospital, staying in the low 90's most of the

time

> but if we took it away she dropped to the 80 and high 70's they sent us

home

> with the oxygen but she looks like she is breathing fine now. If you look

at

> her now she doesn't look sick at all. Can you have CF and sometimes look

not

> sick at all.

> Can you please advise me what test to ask for, I know people mentioned

> different ones.

> Thank you so much for your time and help

> Jo

>

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[Guest guest]

Jo,

My youngest, just turned 5 and for the most part (except when sick)

looks like any other active 5 year old, and even bigger than most weighing

in at 42# and is 43 " tall. He was diagnosed early at 5 months and was able

to start prevention before he got really sick. He has been fortunate to

have only 2 major lung infections and takes meds for digestion and allergies

that seems to help keep the sinus infections at bay. Also I am noticing

that many CFer's don't run fevers much and when the fever hits it means

major sick.

Good luck

Daelynn