Quick intro: I have cf and have a son with 2 mutations (a-typical cf) who is 6 months old. He does not have a cf diagnosis because he passed the sweat & newborn tests which reflect functioning CFTR and pancreatic sufficiency. Also, he has his vas deferens. Further testing showed that he was PS also. He shows no symptoms and is 19 lbs. at 6 months.
We have prepared both emotionally and physically (getting the gear in house) in advance of any symptoms. Since finding out about his cf he has had a head cold that went South and produced a loose cough for a couple days. We did cpt 2x/day and albuterol neb before the cpt. It was probably overkill but I figure it's better to be safe than sorry. The cf center told us as long as he was eating, good disposition, cough not disrupting sleep, no wheezing and no fever to contact the peds that they would consider this a non-cf, run-of-the-mill type cold. They said same goes for ear infections. So that cold was 12/26. Well Friday he came down with another cold. Again lots of mucus from the nose but totally clear in color (just like last time). This time though the cough sounds a little deeper and stickier...more difficult for him to clear. It is very infrequent. Like once an hour and he isn't coughing in his sleep. He had a fever Friday and Sat. but none today. We've been doing albuterol and cpt 3x/day per direction from the peds. Sometimes I can feel mucus vibrating in his left lobes. Would you call this wheezing even though there's no noise from his mouth on the exhale?
My question for you is this....
When do you involve the pediatrician?
When do you involve the cf clinic?
Are these guidelines you've decided or have they asked you to follow this protocol?
In your non-cf kids did they get colds that would produce a cough?
Could you tell me about a typical cold for your non-cf child under age 1? What did it entail?
When you suction mucus from the nose is it stringy (meaning a high tenacity)?
How many colds did your cfer get in the first year of life?
How many colds did your non-cfer get in the first year of life?
...So many questions ;-)
If anyone has the time to help I really appreciate it.
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Thanks to those of you that took the time to answer my questions.
Although Isaac's fever was gone Monday morning his cough was in full effect. What concerned me is it didn't sound loose and wet. We continued with the albuterol and cpt 3x/day and called the cf clinic...skipped over the peds. In my eyes, it was now becoming a "cf issue" although I have no basis for comparison (other than my own cf experience and mother's intuition). The cough sounded deep, thick and congested. The clinic was glad we called and asked if we were comfortable starting him on 14days of Bactrim. They eased my concerns regarding the rattling chest as mucus in large airways. This is not wheezing which I didn't think it was. So he has not wheezed yet. We agreed to the antibx and started it last night. They had told me previously after 3 days of coughing if it doesn't seem to be getting better that we should call clinic. Seems like a good rule of thumb.
We have prepared both emotionally and physically (getting the gear in house) in advance of any symptoms. Since finding out about his cf he has had a head cold that went South and produced a loose cough for a couple days. We did cpt 2x/day and albuterol neb before the cpt. It was probably overkill but I figure it's better to be safe than sorry. The cf center told us as long as he was eating, good disposition, cough not disrupting sleep, no wheezing and no fever to contact the peds that they would consider this a non-cf, run-of-the-mill type cold. They said same goes for ear infections. So that cold was 12/26. Well Friday he came down with another cold. Again lots of mucus from the nose but totally clear in color (just like last time). This time though the cough sounds a little deeper and stickier...more difficult for him to clear. It is very infrequent. Like once an hour and he isn't coughing in his sleep. He had a fever Friday and Sat. but none today. We've been doing albuterol and cpt 3x/day per direction from the peds. Sometimes I can feel mucus vibrating in his left lobes. Would you call this wheezing even though there's no noise from his mouth on the exhale?
My question for you is this....
When do you involve the pediatrician?
When do you involve the cf clinic?
Are these guidelines you've decided or have they asked you to follow this protocol?
In your non-cf kids did they get colds that would produce a cough?
Could you tell me about a typical cold for your non-cf child under age 1? What did it entail?
When you suction mucus from the nose is it stringy (meaning a high tenacity)?
How many colds did your cfer get in the first year of life?
How many colds did your non-cfer get in the first year of life?
...So many questions ;-)
If anyone has the time to help I really appreciate it.
-------------------------------------------------------------------------
Thanks to those of you that took the time to answer my questions.
Although Isaac's fever was gone Monday morning his cough was in full effect. What concerned me is it didn't sound loose and wet. We continued with the albuterol and cpt 3x/day and called the cf clinic...skipped over the peds. In my eyes, it was now becoming a "cf issue" although I have no basis for comparison (other than my own cf experience and mother's intuition). The cough sounded deep, thick and congested. The clinic was glad we called and asked if we were comfortable starting him on 14days of Bactrim. They eased my concerns regarding the rattling chest as mucus in large airways. This is not wheezing which I didn't think it was. So he has not wheezed yet. We agreed to the antibx and started it last night. They had told me previously after 3 days of coughing if it doesn't seem to be getting better that we should call clinic. Seems like a good rule of thumb.