mandapanda323
New member
I am currently awaiting the results of my 17 month-old's sweat test, but I had some questions and concerns that I'm interested to hear feedback on while I wait.
To give a little background, I started worrying about my child having CF when she was considered "failure to thrive." Our pediatrician did not voice major concern about this, but when my baby had not even doubled her birth weight at 7 months, I became overly concerned. We went on repeated checkups and visits, all in which ended up being a huge waste of time. She remained in the 2nd percentile for several months, but I was told that as long as she was growing proportionally with the chart that there was no need for alarm. I felt like I was being stonewalled for feeling concerned. At 7 months she BARELY weighed 10 lbs, even though she was eating all the time it seemed. After trying to placate me, our pediatrician ordered a spot sweat test which came back negative. I began research on what could possibly be the cause of her low weight, and was constantly directed to CF. Of course, I read all of the other symptoms, as well, and all "could have" fit, but I wasn't quite sure. I don't know that she was "overly" salty when she would sweat. Yes, she was salty when she would sweat, but not necessarily any more than any other sweaty baby. As far as poops, I can only think to compare them with those of my other children- hers have always been what I would call "teething poops." VERY smelly, but not necessarily greasy, and very loose. I honestly can't remember her ever having a solid bowel movement. They are still this way, but once again, can it be chalked up to the fact that maybe she actually IS teething?
After the sweat test was negative, I vowed to put the possibility of CF off of the table. We were CONSTANTLY sick with respiratory infections- RSV at 3 weeks (hospital stay but no oxygen), pneumonia about 5 times, followed by another bout of RSV (in the dead of summer), followed by MORE pneumonia, and FINALLY a third bout of RSV that required hospitalization and almost a week of oxygen. Between all of these major illnesses, we have also had ear infection after ear infection- to where we finally put tubes, only to be followed by the same amount of ear infections as if she didn't have tubes at all. Once again our pediatrician showed little true worry, and always took excellent care of her when she was very ill. Every time I voiced my concern about her chest being "rattley", he would tell me that it sometimes takes a very young baby up to a year to get back to "normal" breathing after having severe RSV. During the last round of RSV, I insisted that we see a Pulmonologist.
Upon meeting with the Pulmonologist, he listed 10 possiblities- asthma, allergies, small airways, etc... CF was on the list, but he explained it was a very low possibility due to the Louisiana newborn screen test. He also looked at her previous x-rays, and agreed that she had been sick in an overabundance, and decided to perform a bronchoscopy and CT scan to get a closer look at her lungs and airways. We had the surgery yesterday, and I was completely taken aback by his findings. Her lungs were filled with thick glue-like mucus in the lower lobes. He showed us the pictures and gave very detailed descriptions of what the mucus was like- and immediately voiced his concerns that it was, in fact, CF. He had us have an electrode sweat test, which leaves us where we are now. Waiting until Friday for the results due to when the lab operates at the hospital where the procedure was performed.
I am now on a complete roller-coaster since I was told SEVERAL times that the odds of her having this disease were low. But now he's all of a sudden concerned? She has never suffered from any pancreatic disorders that I know of, but tons and tons of respiratory infections. Her ears are constantly leaking a thick, glue like substance that has recently developed a pungent odor. I bring her to the ENT, we put her on antibiotics and it's like they do NOTHING. He finally quit putting her on them and she just takes drops to keep the tubes from clogging. She has put on some weight (18 lbs at 17 months), but in general she looks healthy. She is very short and even has some pudge on her. But her belly is swollen, which I later read is also a symptom of CF. Because I was so shocked with the concerns of the Pulmonologist, I have questions I forgot to ask. If the CF test comes back negative- what else could be causing the mucus on the lungs? Are there other diseases that this happens in?
To give a little background, I started worrying about my child having CF when she was considered "failure to thrive." Our pediatrician did not voice major concern about this, but when my baby had not even doubled her birth weight at 7 months, I became overly concerned. We went on repeated checkups and visits, all in which ended up being a huge waste of time. She remained in the 2nd percentile for several months, but I was told that as long as she was growing proportionally with the chart that there was no need for alarm. I felt like I was being stonewalled for feeling concerned. At 7 months she BARELY weighed 10 lbs, even though she was eating all the time it seemed. After trying to placate me, our pediatrician ordered a spot sweat test which came back negative. I began research on what could possibly be the cause of her low weight, and was constantly directed to CF. Of course, I read all of the other symptoms, as well, and all "could have" fit, but I wasn't quite sure. I don't know that she was "overly" salty when she would sweat. Yes, she was salty when she would sweat, but not necessarily any more than any other sweaty baby. As far as poops, I can only think to compare them with those of my other children- hers have always been what I would call "teething poops." VERY smelly, but not necessarily greasy, and very loose. I honestly can't remember her ever having a solid bowel movement. They are still this way, but once again, can it be chalked up to the fact that maybe she actually IS teething?
After the sweat test was negative, I vowed to put the possibility of CF off of the table. We were CONSTANTLY sick with respiratory infections- RSV at 3 weeks (hospital stay but no oxygen), pneumonia about 5 times, followed by another bout of RSV (in the dead of summer), followed by MORE pneumonia, and FINALLY a third bout of RSV that required hospitalization and almost a week of oxygen. Between all of these major illnesses, we have also had ear infection after ear infection- to where we finally put tubes, only to be followed by the same amount of ear infections as if she didn't have tubes at all. Once again our pediatrician showed little true worry, and always took excellent care of her when she was very ill. Every time I voiced my concern about her chest being "rattley", he would tell me that it sometimes takes a very young baby up to a year to get back to "normal" breathing after having severe RSV. During the last round of RSV, I insisted that we see a Pulmonologist.
Upon meeting with the Pulmonologist, he listed 10 possiblities- asthma, allergies, small airways, etc... CF was on the list, but he explained it was a very low possibility due to the Louisiana newborn screen test. He also looked at her previous x-rays, and agreed that she had been sick in an overabundance, and decided to perform a bronchoscopy and CT scan to get a closer look at her lungs and airways. We had the surgery yesterday, and I was completely taken aback by his findings. Her lungs were filled with thick glue-like mucus in the lower lobes. He showed us the pictures and gave very detailed descriptions of what the mucus was like- and immediately voiced his concerns that it was, in fact, CF. He had us have an electrode sweat test, which leaves us where we are now. Waiting until Friday for the results due to when the lab operates at the hospital where the procedure was performed.
I am now on a complete roller-coaster since I was told SEVERAL times that the odds of her having this disease were low. But now he's all of a sudden concerned? She has never suffered from any pancreatic disorders that I know of, but tons and tons of respiratory infections. Her ears are constantly leaking a thick, glue like substance that has recently developed a pungent odor. I bring her to the ENT, we put her on antibiotics and it's like they do NOTHING. He finally quit putting her on them and she just takes drops to keep the tubes from clogging. She has put on some weight (18 lbs at 17 months), but in general she looks healthy. She is very short and even has some pudge on her. But her belly is swollen, which I later read is also a symptom of CF. Because I was so shocked with the concerns of the Pulmonologist, I have questions I forgot to ask. If the CF test comes back negative- what else could be causing the mucus on the lungs? Are there other diseases that this happens in?