Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 Hi this is R - haven't posted or lurked in awhile. I was wondering if some people could respond describing their child's first bout with pulmonary symptoms. For those who were aware from birth or shortly afterward that their kid had CF, is it pretty obvious the first time your child has a lung infection? My daughter (18mos) has had only GI symptoms so far. (She is double delta F 508, with meconeum ileus, and all the later GI symptoms that go with it) She started coughing out of the blue today, (miraculously we went through the Chicago winter with only one cold) but otherwise she seems in very good health, not tired, cranky or feverish. We are switching her care to a center (Children's Memorial in Chicago) starting July 8th. I don't get much more from her current doctors than I could find in the Merck manual or on-line...almost none of the practical stuff you learn with experience. Does the cough from an infection sound wet or dry, do you usually see other symptoms as well? I hate to keep calling the doctors every time she clears her throat... Can't wait til we get to the center... R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 , I take Elyse to Children's also, so maybe we will run into each other!! Anyway, I try and listen to other kids' cough, so I get an idea of what is " normal " . I would say that any cough that sounds bad, I mean, one that you think " gosh, that is nasty " , needs to be brought to the attention of the doctor. You can always take her to her ped. if you are concerned. Also, a cough that lingers for a few days or one that keeps getting worse can be cause for concern. My 2 1/2 year old daughter has her first nasty cough, so I know how you feel wondering what it will be like when it happens. If your " mommy radar " is going off, pick up the phone. I think it is better to be safe than sorry. My biggest fear is hearing the doctor tell me that if I had called earlier, an illness could have been prevented. As for Children's, I have been very happy with the care that she has received there. My daughter sees Dr. Boas and I think he is great. Good luck! Colleen Mom to Elyse 2w/cf CF 101 for dummies Hi this is R - haven't posted or lurked in awhile. I was wondering if some people could respond describing their child's first bout with pulmonary symptoms. For those who were aware from birth or shortly afterward that their kid had CF, is it pretty obvious the first time your child has a lung infection? My daughter (18mos) has had only GI symptoms so far. (She is double delta F 508, with meconeum ileus, and all the later GI symptoms that go with it) She started coughing out of the blue today, (miraculously we went through the Chicago winter with only one cold) but otherwise she seems in very good health, not tired, cranky or feverish. We are switching her care to a center (Children's Memorial in Chicago) starting July 8th. I don't get much more from her current doctors than I could find in the Merck manual or on-line...almost none of the practical stuff you learn with experience. Does the cough from an infection sound wet or dry, do you usually see other symptoms as well? I hate to keep calling the doctors every time she clears her throat... Can't wait til we get to the center... R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 My son and your daughter are so alike! Same problems at birth (he was 11 weeks early due to the meconium ileus), no lung until lately, mostly GI problems. His first cough we found was mostly due to teething and the extra saliva so it wasn't a concern. He is 26 months old now and every so often has gotten a cold out of nowhere and it starts with a runny nose, then goes to a " throaty " cough and then to his lungs. It sounds like a regular wettish cough but he is too young to know how to spit the mucus out (ick). All we do is step up CPT to 3 times a day, tilt his bed at night and watch for any other problems (fever, runny nose turning greenish, etc). The problem with all the mucus is that when they swallow it, it irritates their stomach and he often vomits it up. An infection can be there even if they aren't coughing so a cough doesn't necessarily mean she needs antibiotics. I usually just called my pediatrician and had his lungs listened to and 95% of the time, they were perfectly clear. Another question--could she be trying to make new sounds? If someone else is coughing in the family, she may be trying out her vocal cords! Ashton kept scaring us that way for a week but we finally figured out that he was imitating my mother who had a cold!! mom to Ashton 26 months wcf http://www.babyfergie.com > Hi this is R - haven't posted or lurked in awhile. > > I was wondering if some people could respond describing their child's > first bout with pulmonary symptoms. For those who were aware from > birth or shortly afterward that their kid had CF, is it pretty > obvious the first time your child has a lung infection? > > My daughter (18mos) has had only GI symptoms so far. (She is double > delta F 508, with meconeum ileus, and all the later GI symptoms that > go with it) She started coughing out of the blue today, (miraculously > we went through the Chicago winter with only one cold) but otherwise > she seems in very good health, not tired, cranky or feverish. > > We are switching her care to a center (Children's Memorial in > Chicago) starting July 8th. I don't get much more from her current > doctors than I could find in the Merck manual or on-line...almost > none of the practical stuff you learn with experience. > > Does the cough from an infection sound wet or dry, do you usually see > other symptoms as well? I hate to keep calling the doctors every time > she clears her throat... > > Can't wait til we get to the center... > > R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 Hi, 's " sick " cough is wet and chesty. The mucus is yellow or green when she has an infection-though some people have somewhat clear mucus and still have infection. At 4+ she hasn't been really sick in 2+ yrs. But I am always listening for that wet cough. Good Luck and I hope that it's not serious. CF 101 for dummies Hi this is R - haven't posted or lurked in awhile. I was wondering if some people could respond describing their child's first bout with pulmonary symptoms. For those who were aware from birth or shortly afterward that their kid had CF, is it pretty obvious the first time your child has a lung infection? My daughter (18mos) has had only GI symptoms so far. (She is double delta F 508, with meconeum ileus, and all the later GI symptoms that go with it) She started coughing out of the blue today, (miraculously we went through the Chicago winter with only one cold) but otherwise she seems in very good health, not tired, cranky or feverish. We are switching her care to a center (Children's Memorial in Chicago) starting July 8th. I don't get much more from her current doctors than I could find in the Merck manual or on-line...almost none of the practical stuff you learn with experience. Does the cough from an infection sound wet or dry, do you usually see other symptoms as well? I hate to keep calling the doctors every time she clears her throat... Can't wait til we get to the center... R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 J. wrote: >. . . The problem with all the mucus is that when they swallow it, it irritates >their stomach and he often vomits it up. > Particularly when a CF patient is ill, they may have excess mucous but little appetite so may not be taking enzymes as frequently. In that case, our clinic advised a periodic enzyme throughout the day to help digest the mucous that is swallowed. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 Our cue for infection has been a cough that develops to non-stop coughing .... more the frequency of the cough than the sound. Most often, it sounds like there is mucous there, but it is still unproductive in terms of being able to cough mucous up and out. When the cough develops without other upper respiratory symptoms such as a runny (indicative of a cold) we worry more about lung infection. M 16 yo swcf wrote: >. . . > For those who were aware from birth or shortly afterward that their kid had CF, is it pretty >obvious the first time your child has a lung infection? >. . . >Does the cough from an infection sound wet or dry, do you usually see >other symptoms as well? . . . > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 KM wrote: >When the cough develops without other upper respiratory symptoms such as >a runny (indicative of a cold) we worry more about lung infection. > Sorry - I meant a runny NOSE. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2003 Report Share Posted June 7, 2003 Hi ! It's good to hear from one of the other 's. I have been feeling lonely like I am the only here lol. About your question, a cough from a cf exacerbation or flare up is usually wet and junky. At her age, it would be hard to tell if she had other symptoms such as sore throat headache etc. You are probably best to have her seen if the cough persists say over the weekend even if she is acting fine. When my daughter first got sick it was a cold at 5 months which she has never gotten completely rid of that cough, and she is 19 years old now. That doesn't sound right, she hasn't had THAT cough but she has always had some cough since that time in her life. There has not been a day go by that she didn't cough at all. Usually its just a small dry cough, or throat clearing sort of thing, but she always has some cough. I hope this helps and don't be such a stranger! love, another (M) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2003 Report Share Posted June 9, 2003 Great way to describe it . That's exactly what happened with the last time she had pneumonia. Kathy G. Re: CF 101 for dummies > Our cue for infection has been a cough that develops to non-stop > coughing .... more the frequency of the cough than the sound. Most > often, it sounds like there is mucous there, but it is still > unproductive in terms of being able to cough mucous up and out. > > When the cough develops without other upper respiratory symptoms such as > a runny (indicative of a cold) we worry more about lung infection. > > M > 16 yo swcf > > wrote: > > >. . . > > For those who were aware from birth or shortly afterward that their kid had CF, is it pretty > >obvious the first time your child has a lung infection? > >. . . > >Does the cough from an infection sound wet or dry, do you usually see > >other symptoms as well? . . . > > > > > > > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Thank you , and thanks to everyone for all the good advice- I wish I could hug you all! It took a while until I was able to get back to the list with enough time to write. Ellie's developed a cold, really just a runny nose, with an occasional cough that seems like post nasal drip. So far, so good....I am beginning to relax a little. We are planning to go to Disneyworld next week so I am just praying that this just comes and goes without turning into something worse. This will be our first vacation with Ellie! R Mom to 6 w/o cf, Jack 5 w/o cf, and Eleanor (Ellie) 18mos w/cf > Hi ! > It's good to hear from one of the other 's. I have been feeling > lonely like I am the only here lol. > > About your question, a cough from a cf exacerbation or flare up is usually > wet and junky. At her age, it would be hard to tell if she had other > symptoms such as sore throat headache etc. You are probably best to have > her seen if the cough persists say over the weekend even if she is acting > fine. When my daughter first got sick it was a cold at 5 months which she > has never gotten completely rid of that cough, and she is 19 years old now. > That doesn't sound right, she hasn't had THAT cough but she has always had > some cough since that time in her life. There has not been a day go by that > she didn't cough at all. Usually its just a small dry cough, or throat > clearing sort of thing, but she always has some cough. > > I hope this helps and don't be such a stranger! > love, > another (M) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2003 Report Share Posted June 14, 2003 You're welcome and have a great time at disneyworld! love, M Re: CF 101 for dummies > Thank you , and thanks to everyone for all the good advice- I > wish I could hug you all! It took a while until I was able to get > back to the list with enough time to write. Ellie's developed a > cold, really just a runny nose, with an occasional cough that seems > like post nasal drip. So far, so good....I am beginning to relax a > little. We are planning to go to Disneyworld next week so I am > just praying that this just comes and goes without turning into > something worse. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2003 Report Share Posted June 14, 2003 Great to see you back on line. By the way, Are you coming to Disney WORLD(FL) or going to Disneyland (CA) ? if coming to WORLD, give me a call or drop in while here. I live here & would love to hear from you ....Also , any problems ....., give me a call 1- LOVE & HUGS, grandmomBEV Re: Re: CF 101 for dummies You're welcome and have a great time at disneyworld! love, M Re: CF 101 for dummies > Thank you , and thanks to everyone for all the good advice- I > wish I could hug you all! It took a while until I was able to get > back to the list with enough time to write. Ellie's developed a > cold, really just a runny nose, with an occasional cough that seems > like post nasal drip. So far, so good....I am beginning to relax a > little. We are planning to go to Disneyworld next week so I am > just praying that this just comes and goes without turning into > something worse. ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
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