My daughter is 9 1/2 months old now and she had a negative CF in her state screening. She's been sick frequently and every time I take her to urgent care or the ER, the doctor's suggest CF. My pedi insists that she's not CF, as she had a negative state screening. DD caught a cold when she was 3 weeks old that lasted about 2 weeks (standard saline/suction routine). At 3 1/2 months, RSV. Since the RSV, she's had bronchiolitis recurring about every 3 weeks. Sometimes 2. She's had confirmed pneumonia two times, atelectasis three times. She has dual ear infections each time she gets sick (we've not had any of these illnesses occur without ear infection. She has had clogged tear ducts since birth and we have an appointment with an opthamologist in 5 weeks, where we expect to have them scoped. She now has another ear infection (the third one in 6 weeks, 2 occurances of bronchilitis in the same 6 weeks) that has resulted in a perforated ear drum (her second perforated). In addition, she's had an active c diff infection since she was about 4 months old, so every time she's on antibiotics she also has to go on metronidizol to prevent the c diff from getting worse.
I don't want to sound awful, but my mother's instinct tells me there is something going on that is leading to all these infections and illnesses. EVERY visit we make to a doctor that is not my pedi suggests CF to us. My pedi has been resistant on it, and doesn't think it's necessary to test further because she doesn't present standard CF and had the negative state screening.
I've made an appointment with a pulmonologist to see if they can help us further, without having a referral, so they won't get us in very soon (not until May).
I guess I'm curious... am I barking up the wrong tree with pushing my pedi to do further tests before we see the pulm? I hate feeling like I'm persuing something that the pedi says no to, but it's troubling to me that when other doctor's (always through our Children's Hospital network), they ALL mention CF. I'm routinely asked questions about if she was premature (she wasn't) and if we've had sweat tests or genetic testing to rule it out (which we haven't).
So, I'm wondering, has anyone here had to fight with their doctor's to get further help? If you did, was the negative screening wrong? What questions do I need to ask the pedi and the pulm? I just want to help my child as much as possible. They now think she's resistent to the amoxicyllan they've given for the ear infections. Additionally, we've had so many antibiotics prescribed in the past month that my insurance is now denying covering the current antibiotic as I guess I've met some kind of max for the month. They won't cover filling it for another 5 days! That makes battling this kind of health issues even more frustrating since I do have pretty good private insurance coverage.
I'd really appreciate any help or advice you all may have. I realize that she doesn't have a CF diagnosis, but I want to be armed with information if I need to push my pedi or change pedis. Thank you in advance for any input you may have!
I don't want to sound awful, but my mother's instinct tells me there is something going on that is leading to all these infections and illnesses. EVERY visit we make to a doctor that is not my pedi suggests CF to us. My pedi has been resistant on it, and doesn't think it's necessary to test further because she doesn't present standard CF and had the negative state screening.
I've made an appointment with a pulmonologist to see if they can help us further, without having a referral, so they won't get us in very soon (not until May).
I guess I'm curious... am I barking up the wrong tree with pushing my pedi to do further tests before we see the pulm? I hate feeling like I'm persuing something that the pedi says no to, but it's troubling to me that when other doctor's (always through our Children's Hospital network), they ALL mention CF. I'm routinely asked questions about if she was premature (she wasn't) and if we've had sweat tests or genetic testing to rule it out (which we haven't).
So, I'm wondering, has anyone here had to fight with their doctor's to get further help? If you did, was the negative screening wrong? What questions do I need to ask the pedi and the pulm? I just want to help my child as much as possible. They now think she's resistent to the amoxicyllan they've given for the ear infections. Additionally, we've had so many antibiotics prescribed in the past month that my insurance is now denying covering the current antibiotic as I guess I've met some kind of max for the month. They won't cover filling it for another 5 days! That makes battling this kind of health issues even more frustrating since I do have pretty good private insurance coverage.
I'd really appreciate any help or advice you all may have. I realize that she doesn't have a CF diagnosis, but I want to be armed with information if I need to push my pedi or change pedis. Thank you in advance for any input you may have!