Dear Karen,

Yesterday, in my haste to send my message it was
inadvertently cut off by my own carelessness.
Fortunately, most of my messages are saved. The
following post is what was intended to be sent. I hope
it is helpful. Hugs:0)Mary

Yes, your son can still have CF. I would still
recommend getting him the comprehensive genetic
screen. However, it's still possible to have none of
the over 1000 "known" mutations and be a person with
CF. According to Johns 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.





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