reply re: S. and the sinus stuff and other misc.

[Guest guest]

<< BRENDA S., I still don't know how your pulm could think sinus infections

aren't CF related when one of the symptoms listed in the diagnostic statment

is " Sino-Pulmonary Disease, " not just plain old " Pulmonary Disease " . Have

you seen an ENT yet, or had a sinus CT done? Good luck with your big

conference with your pulm. >>

,

I don't think that our mutual doc actually thinks sinus disease isn't related

to CF; afterall, this is the SAME doc who just very aggressively treated

Mallory and for Sinusitis with IV antibiotics (well, ok, he treated

Mallory for Pseudo. Bronchitis, according to the hospital summary and then

extended the course due to continued crackles and also b/c the sinuses were

improving, which was a benefit he did not expect) But, per his visit

summary, he was treating for sinusitis with 21 days of IV

antibiotics....so he does not really think the two are not related. He does

alot of rambling and story telling when he talks, so sometimes its hard to

tell what he really means! (certainly not defending the doc here....both

and I agree that he has been a little tired and " off " lately, he is

the only pulm. at our hospital plus he has new baby twins of his own and 3

older kiddos too, so he probably is legitimately tired.) Sometimes he has

trouble reading what the parents want.....we have dealt with that alot. I

think is very worried about and am quite sure that she will

give him her honest feelings at their next appt. when is that, ?

Also, , I don't quite know what to say about your second opinion

story.....except that I think its best to get second opinions away from your

own clinic! I do know that Ron had the opportunity, along with my parents

and with my sister, to sit down and talk to Dr. for about an hour

last year... they asked him his opinion about how to treat pseudo,

maltophilia, etc. His response was, I believe in being very aggressive (IV's

and tobi, etc). They were left with the impression that with our younger

kids we should not worry about resistence at this point, rather we should

keep their lungs healthy and without lung damage as long as possible, so that

when there is a cure, their lungs aren't ruined already. (this is their

interpretation, remember..... so you are getting it 3rd hand) This has been

the philosophy we have adopted, certainly. I am not going to worry about

resistence.....we just can't. Instead, I want to keep them very healthy and

still allow them to have normal lives.

I do have to say that I feel grateful right now that we have the doc we have

(compared to your experience....sorry!) He is very amenable to his approach

varying based on parents philosophy, etc and at the same time he seems to

want to be aggressive also. I feel like he has given me my kids back healthy

for the summer, and for that I will be forever grateful, regardless of

whatever problems we have had in the past. He also made it possible for them

to go on with life, and therefore us go on with ours, by allowing us to do

home iv's (ok with the poss. exception of no boating for the past 3 weeks,

but hey, thats not his fault that is the first to jump in anytime the

boat stops, hehehe). Anyway, we asked him about Mallory and how we can

prevent her OSA reoccuring, and he said basically that we can only do that be

being very aggressive when she is starting to get ill and he considers that

we already do that (said he thinks we are aggressive and already do that).

Anyway, hang in there!!!!! It will be interesting to see what the survey

results showed....

MICHELLE: cute poem, I read it to my sis, she laughed also. And, oops, I

realized when you posted the results that I forgot to reply to your survey.

It was on the website and for 2 weeks I could not browse, somehow we disabled

our browser...and then the ivs had me swamped... Sorry!! I don't have much

to offer anyway, as we do not know the kids mutations. If there is a way to

add it in now, let me know.

Take care,

Jen