Am I just paranoid?

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Lurking4now

New member
OK, so we took my soon for a sweat test after hubby and I found out
we were both CF carriers.  His results were good-nowhere even
near borderline.   But then he's been really sick, so we
finally convinced his pedi to get a stool sample. (whole 'nother
topic-we're switching docs).  Well, the results were supposed
to be back, but I hadn't received any word from his office, so I
called.  The nurse I talked with was really nice.  They
did have the results but hadn't called (grrrr).  So, she's
going over all his results- good, fine, negative, etc etc.  So
then she gets to "fat" and says well I don't know what
that means.  So I tell her that they were looking for a fat
malabsorption.  Her response was that she needed to have the
doc look at the test results before she could say anything, and she
really wasn't sure what the report meant.  So now I'm sitting
here paranoid on my break at work thinking that maybe something is
wrong and she's waiting for the dr's examination of the records.
 I realize she wouldn't be allowed to tell me about anything
like that probably anyway, but now I'm just waiting for the phone
to ring.  And I'm about to have my 2 toughest classes of the
day (I teach 6-12th grade reading)!  I'm going to end up
being soo crabby with them!  So am I just being paranoid?
 Here I've been worried about the baby I've been carrying and
I may have totally missed what the baby I already had needs!
 I feel like a bad mom...<img src="i/expressions/face-icon-small-sad.gif" border="0">
 
T

thelizardqueen

New member
There is a such thing as a false negative, but not a false positive. If I were you, for peace of mind I would follow up with a DNA blood test to see if your son has CF. Sometimes people with CF can get a negative sweat test for whatever reasons i.e. unaccurate readings, not enough salt in one area, etc. Did you get your test done at an accreditied CF centre? If not, I would suggest that. As a regular centre will test for about 30 mutations, whereas if you get it done at a CF centre, they will test for +1000 mutations.

And you're not a bad mom - you are getting your child tested. That's the first step. How were you to know that this may happen? You're not responisible, and I don't think you are being paranoid in the slightest. Better to be safe, then sorry. Many babies with CF have different symptoms, not all are the same. Have you licked your baby's forehead? Does he taste salty? That's one sign of CF as well. Again, I would get a DNA test done to be absolutly sure. And get it done at a CF centre. You'll have better results there.
 
A

anonymous

New member
Liz, you are so sound and so sweet! I second everything she just said! She is the voice of reason. I have to say, you are wise beyond your years!

Karen ~ sorry, I forgot to sign in.
 
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anonymous

New member
Lisa, I think we all feel a little paranoid sometimes- there's a lot on your mind. You are trying to do your best for your son- its natural to get too focused. Relax and know you are doing what you can right now.

I'm a teacher too. Somedays I come to school just to have a normal routine- home is crazy. Of course, when you are crazy at home AND at school, then you get overwhelmed. ITS FRIDAY! Go home and hug your kids.
 
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anonymous

New member
Drives me nuts the way the nurses handle test results. I once got a call saying DS has pseudo, but don't worry 'cuz it's a rare form -- click. No explanation, I'm thinking RARE, wouldn't that be a bad thing. I was sick to my stomach for weeks until I could get a paper copy of the report from the clinic, which I didn't understand, so I brought it along to our CF doctor, who was able to explain that it was nonmucoid, etc.

Easier said than done, but stay calm and try not to worry about it. Maybe write down any questions you may have, so when they do call back you won't get sidetracked by whatever they tell you.

Liza
 
L

Lurking4now

New member
Thanks everybody for the quick replies!  This is such a great
a community...and, Liz, I agree that you seem so wise beyond your
years.  Everyone is so sweet, I really appreciate that.
 
T

thelizardqueen

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

Liz, you are so sound and so sweet! I second everything she just said! She is the voice of reason. I have to say, you are wise beyond your years!



Karen ~ sorry, I forgot to sign in.</end quote></div>

I think growing up with CF makes you wiser and older then your actual years. I swear I was a 30 year old woman by the time I was 14.<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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izemmom

New member
Lisa - I wish I had read this thread earlier, like when you were still at school. I'm a teacher too. I know you're a great mom and a great teacher. I can just tell. You are doing everything you need to be doing, and that's the most you can do. Don't worry about being crabby with the kids at school once in a while. Think about what they get at home on a daily basis! they'll forgive and forget! Hope it all turns out well. Have a good weekend.
 
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anonymous

New member
Thanks again, everyone. And thanks for your kind words, Tami. I kind of ended up actually having fun with those two classes. Hmm. Well, I didn't get a call back from the dr., so I called...again. That part is getting really irritating. She said that they DID find a fat malabsorption in his stool sample. But since he's feeling better she wants to wait a month and then do another just in case it was just his intestines being really inflamed from the virus. Then she talked about how the other possibilities included getting a biopsy of his bowels, and a GI (I'm not even really sure what that is) but she completely skipped over the simple blood test to double check on CF or a basic allergy, for that matter. I guess she figures that the sweat test is enough for her. Well, not for me (feeling petulant). But not to worry, we are switching docs anyway. All of us will be seeing my general practitioner who I love and I know will take my concerns seriously. We can't get in to see him until April 11th, but he is so good I know we are making the best move. Plus, he won't hesitate for a second to get specialist advice if he even thinks we might suspect something like CF. Thanks again.
 
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thelizardqueen

New member
That's awesome Lisa. Sometimes you just have to go with a second opinion. I would say trust your gut. I don't think it will lead you wrong. I can't even count how many times my mum followed her gut and got me better treatment. Just make sure that your doctor referes you to a CF centre to get the tests done. I can't stress that enough. Good luck!
 
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anonymous

New member
Lisa,
I am praying that both of your children do not have cf. You are doing a fantastic job!!! Keep up fighting for your kids until you get a doctor to take your valid concerns seriously. Both of my kids have cf and what I have learned is that I am their advocate. Even excellent doctors miss things.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf
 
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anonymous

New member
Typical -- we can't do a simple blood test, but gee, let's do a biopsy?!!! Sounds like it's a good idea to switch doctors.

DS's peds nurse once told me to put DS's albuterol in water to see if it floats when I called for a script ?!!! Err, we get the brown bottles of albuterol -- I'm not talking about a rescue inhaler. Liza
 
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