A NEW QUESTION

[JODOIN1]

My daughter was very sick  last week with a virus - she had
high fever for 5 days and lost 8 pounds.  She is almost 13
years old, is 5'2 and weighs 130 lbs.  She ended up having a
throat culture done and they found staphylococcus in her throat.
 They now want her to have a CF test done.  Why?
 Other than having many pneumonia's much younger, she has been
fine.  I don't see the need for it - other than she has staph
in her throat.  Could that be serious enough to have her
tested?  What are the chances of her having CF just because
she has staph in her throat?  We will have her tested (they
can't do it until May 18).  Still, I wonder if we are going
for no reason. ..  Could anybody explain this more to me?
 I should have asked more questions at the hospital....

 

[Emily65Roses]

The many pneumonias sounds like reason for me. CFers *can* be overweight. And there are many people here that weren't diagnosed until their 20s or 30s. If they want to do a test, let them. It won't hurt anything, and if she does has CF, you can start proper meds ASAP, which will keep her healthy for much longer.

If you're worried about there being no family history... don't. My mom was one of 6, I have MANY aunts, uncles, and cousins, and I'm the first <i>and only</i> CFer in my family.

 

[Emily65Roses]

Oh and, feel free to private message me, or ask any other questions. I know it's very confusing (the "does she even have CF?" phase), so ask away if anything comes to you.

 

[anonymous]

Hello - -
I agree that they are probably suggesting the test because of the previous history of pneumonia. I can only imagine how scary it may seem, especially if the suggestion for testing caught you off guard.

Having the test taken is helpful for a few reasons.... 1) Knowing if she does has CF will greatly improve her longevity because she can be treated properly in the future and your family will be better prepared to help her with any needs. 2) If it isn't CF, it may be something else which they will look further into.

The idea of knowing she has CF is probably very scary, but not having a test taken and still having the disease, but not being treated for it, is far worse. It sounds as if they are taking precautions and working to rule out any potential problems.

Best wishes - - Point (28 female/ cf)

 

[julie]

I wanted to welcome you to the site first, I can only imagine how you must be feeling about this, way off guard and scratching your head.

I do agree with what has already been said though... history of pneumona when she was younger, plus culturing staph (staph is a VERY common CF bug but not so common otherwise), I would definately recommend you have the testing, and prepare yourself for some positive results.

Those with CF don't always have digestive, lung and reproductive problems. Some only have one problem or two problems, some have no symptoms for years and years. It's better that she get tested and treated if necessary.

Keep us posted on the results!

 

[JODOIN1]

I appreciate hearing from people.  I will take this seriously,
but it is just a bit scary.  I guess I just want to be
reassured.  Ever since monday (when we came back from the
hospital) I've looked a lot on the web to see what the link between
staphylococcus and cf is.  I can't figure out how she may have
gotten it in her throat as she has never been in the hospital
before.  She hasn't had pneumonia in approx. 6 years - but
before then, she had it at least a couple of times a year.
 She seems to have been quite healthy.  This time around
she got quite sick, but mostly with a high temperature for many
days and a bit of a cough.  She fainted, and that is why we
took her to the hospital (they did blood tests - and they saw
nothing other than it is viral, they also took xray's and saw that
she didn't have pneumonia, and they did a throat culture, where
they called us back for a check up, because they needed to explain
the staphylococcus in her throat - and the need for a cf test).<br>
<br>
<br>
She still coughs a little, but is a lot better.  This is what
confuses me - we never would have known anything if they hadn't
have done the throat culture.  Why can't they do another
throat culture to see if the staph is gone?<br>
<br>
<br>
A friend of mine is a doctor and she doesn't like the fact that she
has staph in her throat - what other reason could she have it?
 I've looked and looked on the internet, and haven't come up
with any other reason - but I find it hard to believe that an
otherwise healthy child would have cf.  I am not in denial -
because we don't know the results yet - and we will face whatever
we need to - but I tend to think they jumped to cf really fast.
 And May 18th is quite far off.  I guess I will keep
looking into what else is the consequence to staph and why she
could have it.<br>
<br>
I also wanted to say that my eyes and heart have opened, and I will
now look at cf with a whole new set of eyes.  I never really
new much about this and I didn't realize how people are effected.
  Thanks everybody, for your help.

 

[skh]

First, welcome to this site. Second, it will be good to have her tested. The wondering and the not knowing is the worst. My daughter wasn't diagnosed until she was 11. She had never been hospitalized but had always had bad sinus problems. But now looking back, there were signs but I just didn't know what to look for. Her BM's were always very smelly and greasy. And she could eat all day long and not gain a pound. Now that she is on enzymes her BM's are much better and she is growing.

I know what you mean about it being scary. This site is awesome though for providing information and support.

Keep us posted.

Sue

 

[JODOIN1]

Thanks for the encouragement.  There is Crohn's in my
husband's family - I just assumed that that was why my daughter
ocaisionally smelled bad.  I never thought to ask her about
her stools.  I have four girls and I've been watching their
health ever since Crohn's was diagnosed in the oldest child of my
husband's brothers .  My girls are all quite short - my 12
year included.  Mind you, she is 5'1" - and a bit taller
than her two older sisters (she is the youngest).  Mind you,
she is also the heaviest, at 130 (by far the heaviest).
   That is perhaps the only thing that encourages me
at this point - her weight!  Both Crohn's and cf people don't
seem to have extra weight.  <br>
<br>
How did your 11 year old take the news?  The first thing my
girl did was look cf up on the internet and then promptly wanted to
cry.  I called a friend up (a doctor) who told me to tell she
only had 5% chance of having it - but that was for her ears only,
and that I should be more worried than that - because of the link
with staph in her throat.  Time will tell....<br>
<br>
Jo

 

[skh]

Since my daughter was familiar with cf and what it means to have it the diagnosis stressed her out. She started to lose some of her hair due to stress. She is now actually handling it quite well. She is 15 and doing great. She is very private about her disease, she has not told her friends. She doesn't tend to talk about it in front of family but she is pretty open with me. So I try very hard to keep the communication between us very open. My daughter and I have always been very close and that has helped both of us through this. For me, it has helped to have this site since I don't tend to open up too much either and this site has given me the chance to do that. I don't discuss my daughter's disease with my other daughters and my husband and I do share but I don't want to add to his hurting so I just tend to stay to myself. It has been wonderful to be able to come to this site and just read and know there are others out there. If you ever want to private message me please feel free to do that. I know how devestating this can be.

Take care!

 

[JennifersHope]

I think it is good that they are willing to test her, or that they even thought to test her. I was not diagnoised with CF until I was 29 years old and had as many pneumonias as I did years alive.

The doctors never considered testing me until my Pancreas started to be crappy.

I know it must be overwhelming and certainly finding staph in the throat is not a definite dx of CF by any stretch of the imagination... I work in a Pediatric Emergency room, and Strep and Staph are the most commong infections we see kids get.

It could have even been a yuck culture, Staph is everywhere on your skin, so even if the swab touched her skin, it could have come up with staph.

It is good to get her checked out, honestly, all though I am glad I didn't know I had CF growing up, it would have been helpful in my treatments.

Good luck to you and I pray it all comes back negative,

Jennifer