Guest guest Posted October 28, 2002 Report Share Posted October 28, 2002 Thanks for your notes - it helps so much to talk with people that deal with the same fears I do. I've kind of hushed up talking about CF with some of my friends for fear of " wearing them out " . I think one of the more difficult things for me to deal with in CF will be the social isolation during the winter months. I used to have the " if it doesn't kill you it makes you stronger " sort of approach to illnesses, and its probably my 180 on this subject that baffles some folks. I think sometimes, the fact that there are so many examples of healthy looking productive young adults with CF, and the fact a cure is thought to be " right around the corner " minimizes the threat of this disease in the eyes those don't deal with it directly. However, the fact there is a " cure around the corner " and a chance that my child may not reach end-stage CF, makes me even more driven to protect Ellie. If a cure (or break-through treatment) becomes available next month, 2 years from now, or 10 years from now, whatever lung capacity Ellie has left at that point will likely be what she has to work with for the rest of her life. Deborah - Here is something maybe you can comment on since your baby presented CF similar to Eleanor. About two weeks after she came home from the hospital (6 wks old, 6wks after surgery) she started to cough without any other symptoms, we brought her in, no crackles, but she cultured positive for Klebsiella. Bactrim cleared up the cough, but 3 weeks later she got RSV (she was a mess & had trouble eating but it appeared to be mostly upper respiratory and she didn't need hospitalization) - she cultured positive again for Klebsiella, and oral cephalexin sp? appeared to clear up the cough. My mother-in-law (a former nurse) thought that maybe this wasn't necessarily the onset of pulmonary symptoms, but might simply be a bacteria she caught from the respirator? There has been nothing but a few runny noses since. What do you think - did you see anything similar? or- Am I just a crazed mother hoping for a mild pulmonary case in spite of all evidence that suggests otherwise?...on second thought don't answer this last question just yet.... just let me just sit here in total denial for a few more months.... > -Welcome : ) > My daughter was born premature with a perforated bowel- " meconium > illeus " so Im sure I can relate to your " long story " . Touching on > the Holiday thing- I know from experience that family get togethers > are not always the best things for a CF child those first couple > years of life. We went to visit family her 1st and 2nd Christmas- > both times she ended up in the hospital in January. And that was with > my family all seemingly in good health. I have decided just to stay > home- at least for Christmas and let others come our way- HEALTHY > that is. I try to make up for lack of family by instituting our own > family traditions. > I have 2 older ones without Cf like you. I think one of the > ways to get your older ones not feeling like they are lacking in > attention is by letting them participate " as much as they can " in > the care of the little one- it makes them feel important and helpful. > > Again Welcome, > Deborah McClintock- homeschooling mother of 3- the youngest - > Elisabeth -4 with CF > > > > > > > -- In cfparents@y..., " blruf " wrote: > > I am brand new to CF parents - Our daughter Eleanor was diagnosed a > > week after her birth - she was born with a strangulated, perforated > > bowel, a long, horrific story..... but she's doing incredibly well > > now, (she's nearly a year old) and I am so thankful! I am also so > > thankful that my two older children tested negative ... > > > > My questions for the veterans out there center around the rest of > the > > family. > > > > 1) Do you get together with extended family at Christmas, etc? - > > Everyone has kids, and it seems as if someone is always sick... We > > have been asked by relatives a few times to host either > Thanksgiving > > or Christmas this year, and it scares me to death. This year we've > > asked that someone else host the holidays, so that if someone is > > sick - we would be the ones to stay home, rather than being put in > > the position of asking someone who is sick not to come. I've > > heard " through the grapevine " that some think we are overreacting > to > > this illness, and maybe we are. On the hand, last year, even > taking > > every precaution we could think of, Eleanor caught RSV @ 3 months > of > > age- and watching that tiny little baby cough just ripped my heart > > out. - How do you handle this? > > > > 2) How do you deal with a healthy, older child that " wants " to be > > sick. My 6 yr old daughter almost " wishes " to be sick. > Her > > 4 yr old brother doesn't have CF, but he gets a really bad case of > > croup every few weeks during the winter, and has been doing this > > since he was 18 months old, and of course her baby sister has CF. > So > > far I have played along to a limited extent, giving her some extra > > attention, taking her temperature, etc. Does anyone else see > > this? > > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > 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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