Guest guest Posted October 11, 2001 Report Share Posted October 11, 2001 Always go by your gut instincts, your her mommy, you know when something is not right. I have been an RN for 23 years, and have learned that most parents, spouse, significant other, know their person better than anyone, as well as living through it my self, and being told that I wanted something to be wrong. STICK TO YOUR GUNS! WE ARE ALL HERE FOR YOU. You can e mail me anytime@ marystratton@... S. Re: Waiting to know > People can have an obstruction but sometimes a bit of bowel movement still > gets past the obstruction. This is due to the colons ability to expand. > > My heart really hurts for you Christy because you sound like you're getting > the run-around just like I got from all my son's doctors until he was finally > diagnosed at age 4. It was the nurse in our first pediatrician's office who > said I was an overanxious mother and she said it while looking smug. That > really stings. > > After my son went for a sweat test, another nurse at that same pediatrician's > office looked scared when I told her I'd had him tested that morning. She > tried to pacify me saying, " Oh, my son tastes salty too when he sweats, all > kids do, and has asthma too and he doesn't have CF, so I'm sure the test will > be negative! " But she looked scared. > > People don't want to hear news like this because it makes them feel > vulnerable and that nurse felt vulnerable. I always got the feeling she was > suddenly remembering something from her nursing school medical books and > wondering how they could all miss the symptoms in my son... > > Whatever happens, remember you're the mom and as such, you're a partner in > your daughter's health care -- both of your daughters -- until they are old > enough to help make their own health decisions. Parenting takes courage > sometimes and you can do it. > > Please don't be afraid. Your daughter will feel so much better once she gets > the treatment she needs -- whether or not she has CF -- and with proper > treatment she will start to gain weight and thrive. > > Right now, if you want to do something proactive, take her back to the doctor > and insist they do a sputum culture and send it off to see what's culturing > in her lungs. > That is another well to tell -- if she cultures pseudomonas then likely she > has CF. > But because your daughter has already spent time in hospitals she could have > picked up a bacteria, not " a virus. " > > My son had a sputum culture done three days after his sweat test and the > sputum came back positive for staph. After 14 days of antibiotics and > starting enzymes, he felt so much better and looked so much better. The > swollen belly started to disappear because his digestion was improved. > > Blessings to you ... hang in there. > Kim > Mom to (age 22 with CF and asthma) and (age 18 1/2 without CF) > > 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...
Guest guest Posted October 11, 2001 Report Share Posted October 11, 2001 Christy, I was thinking about Brooklyn's discomfort while you await test results. Before there were synthetic enzymes, CF patients were instructed to eat no-fat diets. Maybe that would help Brooklyn's belly for a couple days? Hugs, Ann, Mommy of Joy w/cf @ 22 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2001 Report Share Posted October 11, 2001 Christy--just to confuse you-- the answer to your question about cf tummy problems is both yes and no, in my experience. I know this really clears things up! n wcf, mom of 3 adults, youngest wcf, too, all hanging in here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2001 Report Share Posted October 12, 2001 Ann, I have not had to worry about what she eats the past few days, because she does not want to eat. But, that is a good idea. It may settle her stomach even more. I am hoping to hear today about Brooklyn's test results. Yesterday, I picked her up from the sitter and she looked better than she had in 7 weeks. Her face had a little color and the circles under her eyes were better than they were even this morining when I dropped her off. After 6 weeks of vomiting and diarrhea, she has not gotten sick in over a week. It seems like her ribs are not sticking out as bad as they had been a week ago. Maybe whatever she had is gone. I would not think that CF sypmtoms could come and go like that (really all her life she has been sick off and on-but the last time was by far the worst). Now I am wondering if the test comes back negative, if I should pursue anymore tests or just wait and see how she is doing. What do you think? I know that since she has not gotten sick in several days, her doctors office will say, " I guess it was another virus. " That's what they usually do anyway, and maybe they are right. Is it common for CF patients with GI trouble to have symptoms that come and go? Her only problems now are constipation and a drop off in her appetite (well, her tummy's still sticking out, but I think even that's better). Thank you, Christy mom to Brooklyn (18 months) and (6 years) ----- Original Message ----- To: cfparents > Sent: Thursday, October 11, 2001 10:19 PM Subject: Re: Waiting to know > Christy, > > I was thinking about Brooklyn's discomfort while you await test > results. Before there were synthetic enzymes, CF patients were > instructed to eat no-fat diets. Maybe that would help Brooklyn's > belly for a couple days? > > Hugs, > > Ann, Mommy of Joy w/cf @ 22 months > > > > > > 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...
Guest guest Posted October 12, 2001 Report Share Posted October 12, 2001 YES, that was the way with ERIN, even tho now, she is fine.She does have gas once in a while , But she tries to watch what she eats to help contain that some. It isn't always easy...She does use her enzymes and that really is her best helper. I wish you the best in the coming days ,as the report get to you. Let us know how it all turns out. Love & Hugs, grandmomBEV Re: Waiting to know > Christy, > > I was thinking about Brooklyn's discomfort while you await test > results. Before there were synthetic enzymes, CF patients were > instructed to eat no-fat diets. Maybe that would help Brooklyn's > belly for a couple days? > > Hugs, > > Ann, Mommy of Joy w/cf @ 22 months > > > > > > 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...
Guest guest Posted October 12, 2001 Report Share Posted October 12, 2001 Christy, Welcome to the list. Ive been on holidays for a week so Im just reading posts now. I have a 4yr old girl with cf. She suffered constipation and very very rarely diahorrea. We have the heel prick tests in Australia when babies are born for cf. My son however had a bld test to check if he was a carrier etc. and my sister-in-law had the cheek swab and that checks for the cf gene. I hope it all comes back negative for cf, but if it doesn't you'll have plenty of friends on this list who know exactly what you are going through. Best of luck Waiting to know > Hi All, > A couple of days ago a nice person off of another web site > recommended that I visit here. I have been reading your posts since > then and was not going to bother you, but I'm still pretty scared and > am hoping someone out there will give me an idea of what else could > cause my daughter's symptoms. So if you don't mind, here it goes: > > My youngest daughter is 18 months old. Her name is Brooklyn. When > she was born she spent a week in NICU for a lung infection of some > kind. After we brought her home, she seemed fine. She had trouble > digesting formula when I stopped breast feeding and we went through > every type (even had to special order some through the pharmacy) and > nothing worked. Everything gave her extremely bad constipation. So > at nine months she went off bottle and formula for good. This seemed > to help, although she is still constipated always, it's just not > quite as painful for her. Over the past year and a half she has had > many " viral " infections. I put that in quotes because that's what > they always called it when she was vomiting and getting dehydrated. > She had to be hospitalized for dehydration some, but sick a lot. > > Then, about six (or is it seven now) weeks ago, Brooklyn started up > with another viral infection. Only this time when it went away after > three or four days, it started back after 3 or 4 more days. She has > continued this pattern for over a month now. She is constipated for > several days and then vomiting with diarrhea for several days. > She's ended up in the hospital twice now this time, and it is a > weekly struggle to keep her out. > > She has two great pediatricians that are working together to find out > what is wrong. She also has a pretty good GI doctor. She has had an > upper GI, an endoscope, urine tests, lots of blood tests, x-rays, ect. > They have not been able to diagnose. > > Then about two weeks ago a nurse saw Brooklyns BM's. Not the > constipated kind, but the diarrhea kind that is really pale and > smells soooo bad that you really almost get sick when changing her. > She immediatley said that it had the CF look and smell. > > Now her Pediatricians (well one of them, Dr. Boger wasn't in last > visit) are pretty conviced she has CF (or is at least afraid it may > be). Last Tuesday they tried to do a blood test, but could not get > any blood (her veins kept " blowing " ). So they ended up doing a cheek > swab. They also asked for a stool sample. It took 5 days for her to > have a BM, but I took it in. They are measuring the fat content. It > was not a " bad " BM. It was brown and streaked with blood. I am not > sure if that will show the same results as the other BM's. > > Anyway, I am really sorry that this is so long. I am really worried > and have not been able to eat or sleep for quite some time (at least > I am losing weight). If anyone can think of anything else this could > be please let me know. > > Also, do you think I should call and ask why we have not had a sweat > test done. It seems strange after what I've read on-line, but then > I'm a Kindergarten teacher, not a doctor. > > Thanks Again, > Christy > Mother to Brooklyn (18 mon) and (6 yrs) > > > > 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...
Guest guest Posted October 12, 2001 Report Share Posted October 12, 2001 Christy, Yes it is very common for colds to come and go. I remember telling our doctor is just seems like the cough never goes away for very long. It might be gone for a week but then it is right back and they would tell me well it must be just another virus that she caught. Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2001 Report Share Posted October 13, 2001 Kim, you are right. Shantell has been constipated most of her life. There are times she will have diahrea, too. She was born with meconium illeus, and has had two serious bowel obstructions where we thought surgery was the only alternative. Constipation in a child with CF is indicative of a potential obstruction caused from thick mucous and malabsorption. Not a sign that there is no CF. FG, mom of Shantell 19 1/2 years wcf > [Original Message] > > To: cfparents > > Date: 10/10/2001 10:37:32 AM > Subject: Re: Waiting to know > > In a message dated 10/10/01 10:44:37 AM Central Daylight Time, jfkdc@... > writes: > > << Well, if you don't want the answer to be CF, the fact that she's > constipated > a lot is a good sign -- I think you'll find that we as CF parents have the > opposite problem with our children's stools. The blood in the stool is > troubling -- another contrary indication to CF. You say she has had a lot > of > " viral " infections -- sounds like she may have an immune system deficiency > as > it is my experience that children with CF actually have a heightened immune > system. >> > > Kathleen, > > I'm about to burst your bubble. Constipation can be a sign of bowel > obstruction, which is not that uncommon in people with CF, especially those > with certain gene types. Not all people with CF need enzymes or have > digestive problems. This is what makes CF go undiagnosed for so long -- > doctors believe there is only one picture and most doctors don't look at the > whole picture. > > Blood in the stool is not a contraindication of CF. Blood can occur from > tearing caused by straining during a bowel movement or ruptured blood vessels > from too-frequent bowel movements. My son went undiagnosed for CF for 4.4 > years. As an infant and toddler he had foul-smelling, greasy, bulky, runny, > yellow bowel movements (which we think of as " typical " CF yet his doctors > sure missed these clues!). He also had blood in his stools as an infant but > the pediatrician brushed away my concern saying it was " a virus " and put him > on Donnatal Liquid. For weeks he stayed on the Donnatal because the doctor > said it helped the diarrhea. When I question why he always had diarrhea, the > answer was " it's just a virus. " > > He was in the peds office often for bronchitis, ear infections, congestion, > diarrhea. And it was always " just a virus " or " allergies " or " it's typical > childhood stuff, you're just an overanxious mother. " > > Later, our CF doctor explained that people with CF have an overactive immune > system. If you study how the body works, an overactive immune system isn't > good nor does it mean they can't catch whatever is going around. > > Kim > Mom to (age 22 with CF and asthma) and (age 18 1/2 asthma and no > CF) > > > 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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