My son has just turned 7, and by all accounts you would think he is perfectly healthy.... he is just above average for his height, and at the bottom of normal for his weight. However, since he was born, he has had severe respiratory problems. At 3 months he was diagnosed with Trachiamalacia and asthma. Every year at least 9 months out of each year we battle with pneumonia and what sounds to be a "croup" cough. I have gone through several pediatricians, most of which just said "Mom don't worry, it's just another virus... after all he is in daycare/preschool/ and now school. I finally found one last year that said I was well justified in being worried (duh!) and it was time to do some further investigating. He sent us to a pulmonary and he was scoped last year and was diagnosed with Bronchiomalacia. They were going to do a CF test, but given that he had been growing well, and the new diagnosis, they decided against it. Now here we are a year later, and although he has done much better this year this recent illness turn to pneumonia again. The normal treatment didn't work, so they put him on a stronger antibiotic, and while the pneumonia seems to be clearing up a bit he is still coughing and wheezing despite the neb treatments and prescription cough syrup. So, now we are on round 3 of antibiotics and back on Prednisone to see if we can help him get cleared up. Doc says that if this round of Prednisone doesn’t help then he doesn’t know what the next step should be, and he will call the pulmonologist back in. After seeing his new doc yesterday (the one we found last year moved) he asked why they didn't do the test last year... and now wants to do the sweat test as soon as they can schedule us. I am of course beside myself with worry, and am hoping that maybe there might be some other parents out there that have been through something similar. If so, I would so appreciate hearing from you. Thanks, Kristi
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- Thread starter Kristi
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AbsintheSorrow
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If you ever think something should be done that isn't, you have to be pushy with doctors. They like to think they know the child better than the child's own parents. As far as having the test done, it should've been done last year anyway. It's not an invasive procedure, and even if they didn't think so, it should've been done to rule it out. It sounds like you need to speak up and start being real pushy with these doctors. I am no CF parent, and have never been through this because they knew from the get-go that I had CF. But I do know the need and techniques of being stubborn with nurses and doctors. As the parent of a child who's constantly sick, whether he has CF or not, you need to speak up when you think something needs to be done that isn't being done already. This is a rule most CFers and/or CF parents learn pretty early on. My mom did it for me until I was able. Now I do it myself, and my mom backs me up. Haha. Hope I've helped, and hope you get some kind of an answer... and though you always hope for no CF, it's not the immediate death sentence it was back in the 70s/80s area. Of course we'll be hoping he's CF-free, just wanted to interject that it's not as bad as it once was, if he's tested and it's positive.
My nephew was not diagnosed until after my daughter was diagnosed. He was four at the time. His parents just accepted his problems and the doctors did, in my opinion, did not do their job. There is nothing you can do about a diagnosis of cf, he either has it or he doesn't. Testing is the only way to find out. It sounds like he has been through a lot. If it is a diagnosis of cf, there are medications and treatments to help him. Just walk into the doctors office and say I want my son tested for cf next week at the latest. Don't take no for an answer. If you are ever told no on something that you think your child needs, leave and find a new doctor.Sharon, mom to Sophia, 2 and Jack, 7 months both with cf
Thank you to those that have written... I have just gotten off the phone with Childrens Hospital and he will be tested next Thursday. I have, I believe, found a great doc, who is the one that suggested that this should have been done last year... in any case, the testing will be done in a week and we will take it all one day at a time :0)
AbsintheSorrow
New member
I'm glad you put your foot down... the doc who suggested it in the first place sounds like a good idea. And we all (though I guess I shouldn't speak for others, haha), will be wishing you good luck!