We have been very blessed with pretty much assymptomatic CF. However last year at this time they did find some psuedomonas and did a bronchoscope. She seems to have more trouble this time of the year. This just her second winter as she's only 20months old. With that comes her inability to communicate to me her complaints. All I see is a clear runny nose that started yesterday and a few days before a terrible hacking cough. Poor girl. We haven't been to the CF clinic in nearly a year, we haven't needed to, everything has been GREAT. So now I have her with a hacking cough and not sure if I need to call the CF clinic to make an appointment or call her pediatrician. Money is pretty tight so I don't want to make an appointment with the pediatrician just for them to send her to the CF clinic. That's $70 in copays rather than just $40 if we just go straight to the CF clinic.
So for you more experienced mom's would you bypass the pediatrician all together and go directly to the specialist since she had issues last year at the time and is once again having problems? I just hate for her to be sick.
We bypass the pediatrician. But that's us. I took him to the pedi one time, they sent us home and we were in the ER with RSV that night! I just don't think they're trained for the complications of CF.
I know I'm coming in pretty late on this, but in a situation like this, I'd call the CF clinic.
Alexa has been (knock on wood) really healthy so far, but her first year, we still went to the clinic once a month, dropped down to every other month her second year, and now go every 3 months from now on. I see her pedi MUCH less than I see her CF team.
I definitely would go straight to the CF clinic. That is what they are there for. The peds aren't specialists and may just pass it off as a regular kid sickness. It's also a good idea to make regular 3 month check ups (our clinic calls them "tune-ups") at your CF clinic whether or not they have symptoms. Get a lung culture every time too. My little guy was 6 months and no symptoms the first time he got a positive pseudomonas result. Had we not done that, who knows what bad stuff might have come from it. He is now 3 and understands that "clinic time" is there to keep him healthy. Good luck!
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- elliesmommy404
on Dec. 11, 2010 at 9:48 AM