FRUSTRATED

[KAME]

I've needed to change user names because my girls don't believe I
have any need to ask questions.  I joined up on friday with a
question to ask - my daughter has staph in her throat.<br>
<br>
I am frustrated because I do have questions about cf (and why they
believe we should have her tested for cf because they found staph
in her throat) - but when I do ask questions all my girls (except
Mel) thinks I'm worrying for nothing and that I am wasting
everybody's time.  They (my girls) saw me
looking/questioning on the forum and recognized my username so I
felt the need to change - for the sake of privacy, and also so Mel
doesn't worry needlessly.  <br>
<br>
Obviously I will be using the forum when they won't be around.
  But I also noticed that other people also think I am
wasting my time asking questions about cf because there
"isn't" any chance she will have it.  Even if she
doesn't - what is the harm in being informed.<br>
<br>
Sorry for letting out my frustrations - and thanks for listening.
 - KAME<br>

 

[Jane]

Don't apologize for asking questions. This forum is here for support. Its ALL questions and answers. I'm sorry I can't answer your question about staph. But maybe someone else can.

Good thinking about the new name<img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[JazzysMom]

You do what you need to get info that will help in the long run. No need to apologize & try not to be frustrated. All of you are dealing with a lot!

 

[Seana30]

Kame,

I know EXACTLY how you feel! I had a very long discussion with my mother the other night about CF.

I don't talk about CF to my family (mom, brothers, sisters) because they just don't get it. My brother even said recently "maybe she will outgrow it".

You don't feel bad, you don't have to explain to ANYONE why you are asking questions, or feel the way you do. I just always remind myself they have no idea what I am going through, and hope they never have to!

You hang in there!! Know there are many people here that have been through excatly what you are going through now, and can help you answer questions, and be there to listen!!!!

Seana

 

[thelizardqueen]

I would say its better to be safe then sorry. If she has CF then you can get her treatment, and she will be all the better for it. If it isn't CF, then great - you can move on to see if maybe it is something else. A lot of people on here weren't diagnosed until they were 20, 30. If you can pinpoint it now, she can live a better, somewhat normal, healthy life!<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[skh]

I have to agree with the previous posts. It doesn't hurt to find out and like Liz said if it's not cf great and you can move on.

This is a great place to come for support and information. Don't ever apologize for the need to vent. We have all been there and understand.

Take care and know that we are here for you.

 

[KAME]

Thank you!  I appreciate your advice.  Just this morning
my sister in law basically told me that I was being ridiculous even
going for the test - I had to tell her that I didn't choose to go
but the doctor wants Mel to go!  She thought I was being silly
for even worrying.  I guess I'm not worrying anymore - but I
want to be totally informed.  And if it isn't cf - then I want
to know why she has staph in her throat, why she got it, and what
it could eventually mean (if it means anything).  I won't stop
there.  I know Mel had quite a few pneumonia's (needing an
asthma pump), but it has been quite awhile.  I also know that
in both my brother in law's families I just remembered that two out
of each of their children (one has 3, the other 4) was pretty badly
sick the first couple of years of their lives with multiple
pneumonias - and they were even hospitalized (all four of them) on
many occaisions.  I wonder if there is a link.  The 18th
of may is far!  Thanks KAME

 

[thelizardqueen]

Keep us posted! You'll be in my thoughts!

 

[anonymous]

Hi- my son who is 20 has CF. A couple of years ago my nieces child was sick and they took him to my sons dr. He was hospitalized- had RSV, severe allergies ,etc. They did testing on him for CF because of the family history. The throat culture showed a bug- dont know what- that our dr said she had never seen cultured in anyone except those with CF. She even started treating him. The sweat test was inconclusive so they did the DNA and it ended up he didnt have CF. She was very shocked but pleased that he didnt have it. So maybe your drs thought because of what was cultured that it warranted further testing. My perspective is that you will feel a lot better if you go ahead and get it done. You know her better than family and it is probably nothing but at least you will know for sure. Susan

 

[julie]

Just because a DNA test indicates a person doesn't carry a common or known CF mutation, doesn't really mean a darn thing.

The frustration and difficulties lay in the fact that a few times a year (sometimes more, sometimes less often) new CF mutations are discovered by researching companies. To date, there are over 1000 KNOWN CF mutations, but about 10 years ago there were only a few hundred. And still, 99.9% of doctors ONLY test for the 25-89 MOST COMMON CF mutations. Common sense comes into play here when you have to ask yourself, "well, what if my child (or friends child or family member) doesn't carry one of the most common mutations, what if they have a rare muation?" That is why these extended panle tests are becoming more and more common noways-and I am so happy to hear that.

Before my husband and I proceeded with IVF, I was tested as a carrier on the 25-89 most common mutations. That wasn't good enough for us though, I needed a broader test. Still understanding that even the tests which look for all of the KNOWN CF mutations are still not 100% accurate because there are many mutations still to be discovered, it made us feel more comfortable about our decision.

So to the last anon poster, I just wanted to point out to you that if the child is expressing all of these symptoms and the sweat test was inconclusive (just curious, how was it inconclusive? Borderline or what???), just because a DNA test didn't find a mutation still doesn't mean the child doesn't have CF-even if the DNA test didn't find anything.

Kame, although it's easier said than done, don't let your family make you feel bad or anything else about your decision to have your daughter tested. It's your child, not theirs. You have to do whatever you need to do to find out what is ailing your daughter and get her the appropriate treatment. And quite honestly, if the sweat test is borderline or low, I would still (If I were in your shoes, knowing what I know about CF and sweat tests and blood tests today) go ahead with an EXTENDED PANEL cf mutation analysis. QUEST DIAGNOSTICS is a reputable, long standing laboratory and they have the most advanced extended panel CF test. Best of luck and do keep us informed!!

 

[KAME]

Again, I am happy to hear from people.<br>
<br>
As for Mel, we will start with the sweat tests.  I guess after
that we shall see what we do.  I am just surprised they didn't
do another throat culture first, to make sure she really had staph
in her throat.  But if the sweat test come back ok I will go
see her family doctor and see what else we can do to determine why
she has staph in her throat.  Other than staph in her throat,
her being very sick with high temperature about two weeks ago, and
the multiple pneumonias younger (over 6 years ago).  She seems
ok.  Mind you, one of the things she complained about - and I
actually heard her wheezing quite a bit - was having a harder time
breathing.  But xray's showed she didn't have pneumonia - so I
don't know why she made such a noise when she breathed.<br>
<br>
KAME

 

[anonymous]

I am the one who posted about my great nephew. When I said inconclusive that was misleading. If I remember correctly they couldnt get enough sweat. They knew which mutations to look for - in the family. My son has 2 rare mutations. And my great nephew is now 6- he definitely does not have CF. I was just trying to respond why they might have wanted to run the test based on what was cultured. Susan