Advice/ help please

[Guest guest]

Hello everyone,

I have a few questions that I was hoping some of the more experienced people

(more so than me anyway) could help me with. As you all know, I have

five-year-old identical twin boys with CF. They were diagnosed at five months

of age when Jonah caught a cold (RSV) and could not shake it. He was

hospitalized for about three weeks and was tested. Jonah did not go back

into the hospital again until a few weeks ago. has only been in once-

back in August. They have been very healthy thus far. (They are in the

90th-95th percentile for weight on a very low dosage of enzymes.) Anyway, they

have both cultured PA. Both of them had clear cultures when last checked.

Jonah's was checked on the 9th of February. He had just finished his tune-up.

's was checked on the 8th of January. They both have allergies but are

taking Claritin daily. They are both currently on their 28 days " on " TOBI. They

are, however, both coughing again. It is not a lot and is not a constant

throughout the day. It is also not during the night. Well, if it is, it does not

wake anyone up. They would let me know if they were awake. They cough more in

the mornings when they get up and when they are doing their TOBI. They might

cough a few times throughout the day, but it is generally not productive.

Jonah's cough basically went completely away while he was on his IV antibiotics,

but it came back within a week of coming off of them (even though he was on

TOBI). My question is this: Is it common to cough more when on TOBI, should I

be worried, how do you know when to worry. Also, is it not a given that CF kids

will cough? That is what all of the literature that I have ever read says, but

whenever they go to the doctor, they talk about wanting them back to a baseline

of no cough. I am confused.

Help,

Peggy mom of Jonah and 5 years wcf