Results from last week are in: It's CF

B

bmombtoo

New member
Hi,<br>
<br>
So now I know why the technician wanted me to call the doctor back
this week. The doctor called me this morning and said his nasal
potential differential and sweat chloride are consistent with CF.
The CF sweat test for non-carriers or unusual presentations blocks
the path or channels of normal sweat electrolytes; low scores are
positive. Scores from1-3 are positive for CF.They did both arms and
one arm was .04 and the other arm was 1.  something. He also
cultured staph (I think that is what she said) in his throat
culture, or strep. She is Definitely waiting for the full mutation
panel to come in, but will see him in early October.<br>
<br>
He had a pretty bad headache last night with a queasy stomach
ache,and she indicated it could be a migraine because they are
common in CF. His sinus infections seem to present that way. If he
gets it again tonight I will take him to the pediatrician.<br>
<br>
I'm feeling pretty numb. It's good to have a final diagnosis but it
still comes as a shock, We always hold our hopes out for the best.
Once she gets the mutation panel back they will consider further
testing for me and my oldest son. I will definitely keep you guys
posted.<br>
<br>
Dolline<br>
 
R

Ratatosk

Administrator
Staff member
Tough as it may seem getting the diagnosis --- finally... At least you have some answers as to why he's had problems with his sinuses, etc. and you can focus on treatment to keep his lungs happy and healthy. Are you signed up with an accreditted CF program?

Make sure when you go for the appointment in October to take along a notebook with a list of questions -- CPT or vest, nebulized meds, oral meds, vitamins.... to name a few topics.
 
A

anonymous

New member
No doubt, the CF diagnosis is bad news but hopefully in some way a relief. Now you know what you are dealing with and can meet it (beat it) head on.

I hadn't heard that migraines were common among CFers?

Make sure you come here often with questions. There is so much information thrown at you right away it can be overwhelming.

We're here for you...
 
M

Momto3

New member
I'm so sorry for the diagnosis<img src="i/expressions/face-icon-small-sad.gif" border="0">  Proper treatment should make
a huge difference in his health though.  If you have any
information, or get a chance, please post more information about
the carrier sweat test.  I know it would be very helpful to me
and probably several other people.  I'm glad they're pursuing
testing for you and your older DS.<br>
 
S

skh

Guest
It's hard to hear that your child has CF but it's also a relief because now you can move forward and make sure he has the proper medications and treatments.

My daughter was diagnosed 4 yrs. ago at the age of 11. She was always having sinus problems. Now she is doing great and is very seldom sick. It's amazing how well they do once they are on the proper meds.

Keep us posted and don't hesitate to ask questions. I think that first year when my daughter was diagnosed I was kind of in a haze. Things do get better.
 
K

kayleesgrandma

New member
Dolline, what a relief and a nightmare all rolled up in one! We knew our Kaylee was sickly, and by the end of her 1st year of life, we found out why--she had cf .Now that we know, we can roll up our sleeves and go to work fighting this horrible disease!
 
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