Dear Karen,

Hopkins there may be more to CF than the CFTR
mutations. Some people have CF that is more difficult
to diagnosis, because they have what is known as
atypical CF [also known as nonclassic CF]. This is
cystic fibrosis that does not follow clinical textbook
cases. Your child's CF doctor can provide further
information to you about atypical CF. It's important
that your child be followed up and treated by a CF
paediatric specialist. Based on his symptoms and the
fact that he has pseudomonas, sweat tests results in
my "none medical opinion" it sure sound silk CF or a
CF-like disease or syndrome - either way follow up is
vital. Pseudomonas and other infections can do a
great deal of damage to the lungs. These infections
need to be treated aggressively whether or not your
son is considered to have CF the infections can still
be hard on his lungs and cause damage to them. It’s
important not only to get him on the proper
respiratory treatments and antibiotics, but a good
chestphysiotherapy program. Please speak to your son’s
paediatric pulmonologist about all of the above. It
will be important for your child to be active.
Swimming is thought by many doctors to be an excellent
activity for children and adults with lung disease,
although chorine and bacteria levels can be a concern.
You should try to seek information about the quality
of the pool’s water. I would also recommend jumping
jacks and other fun activities. Horseback riding can
be helpful for lungs, but likely is something to
consider when he’s a bit older.

Was his sweat test done through an accredited CF
clinic?

Wishing you all the best.

Hugs:0)
Mary with atypical CF, possible bronchiolitis (?), and
asthma … and considered to have complicated lung
problems.



--- wulfluvr1 <Mrsmurffy@...> wrote:
---------------------------------
My son has had chronic lung infections, sinusitis,
sinus surgeries,
and malabsorption. We just did a sweat test yesterday
and the doctor
called back the same day and said his sweat test was
positive with a
level of 80.
Is this diagnostic for CF?
the doctor said it was.
Also what if his sweat test is positive but he is
negative for the CF
mutations? Can he still have CF?
I also have a daughter with the same symptoms. They
have alot of
infections...including pseudomonas.
thanks Karen



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