My son is 3 months old and was dx with GERD at 5weeks old and a protein allergy and was put on alimentum...he got an ear infection at 8 weeks and was put on amoxicillin...ended up with c-diff on day 5 of the abx therapy...was put on flagyl for the c-dif and seemed to get better. Now just a few days after the flagyl he has loose, mucousy stools the smell very foul. I have taken in 2 stool samples in the past 1.5 weeks and both came back negative for c-diff....he has been sweating constantly since birth...it does taste salty but I thought all sweat was salty? our peds says no to that and does not like the stools and sweating so are having a sweat test done next wednesday...does any of this sound familar to anyone? Just worried. We have no CF in the family and neither my husband or I have been tested. Any words of wisdom? Thanks...a very worried mom
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3month old being tested and I have questions
- Thread starter anonymous
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Augustmoon
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Dear worried mom,I understand what you are going through and hope we can help you! CF does not run in our family either and if you ask a lot of families they will probably tell you the same (at least the ones I've met/talked to). I hope and pray that your son doesn't have CF, but please know that the outlook is much better today, and once he gets the meds he needs, he will feel much, much better! Please feel free to email me if you need to talk...email: augustmoon0003@aol.com. We also have a website...www.fightforethan.com! I'll be thinking of you!!!!
hi,Lose mucusy foul smelling stools are very common to those with CF. The very salty sweat is too. However, some people have the same stool problems with ciliac's diease and/or allergies to milk sugar (lactose), milk protein and soy. I don't want to be a downer but combined with the sweating, it does sound like it could be CF, but it might not be. If it is, it is better to get the diagnosis before there is a lot of lung damage from not getting the right treatment. let us know please.Andrea
Hi. I know you're scared but it sounds like you already have good doctors if they want to go ahead and sweat test, many of them put it off until a lot of damage has been done that could have been avoided had you known and been treating. So, at least you can feel good that they are doing the right thing. Make sure it's done at an accredited CF center though, otherwise it won't be accurate. We can't trace it back to anyone in our families either. Many infants that passed away 60 or more years ago had CF and no one knew what it was or what to do though so I think it's in a lot more families than we're aware of, just so long ago that know one can be sure. Today, you know the outlook is much, much better. The quality of life can be great, if properly treated, some other people I've talked to in and out of clinic have said their children are doing so great, they can almost forget about the disease for a period of time. I don't, every child/family is affected differently but I'm happy to know that some do so well that it's not always on their mind. Quick treatment is important and staying on top of the doctors and nurses to make sure they inform you of everything. It is scary at times but it makes you appreciate everything they do and think about them in a way you wouldn't have otherwise and that is really special. This site is great for any questions you have if he does have it but we will pray that he doesn't because I know no matter how much we reassure you, it's a scary thing to face.
Listen to the above statement - make sure the test is done at an accredited CF center. We had no problems, but I have read several stories of false test results because they were not done correctly.We had no history of CF in our family (as in most cases, actually), but our son does have CF. Everyone probably presents differently - some with more lung problems, some with more digestive problems. My son was actually diagnosed at 3 as a result of digestive problems. My doctor wasn't as smart as yours - we complained for 2 years that something was wrong (4-5 loose bowel movements a day), but my doctor swore up and down that he was fine. I wish we hadn't put so much trust in him. I am glad your doctors are taking you seriously.I hope that you pinpoint your son's problems so that he can get the necessary treatment. The salty skin and loose smelly stools ARE a sign of CF (just prepare yourself), but you can't jump to conclusions just yet. If his results show positive for CF, it is NOT the end of the world. Your son will still able to shoot for the stars!Good Luck!
Thanks to all...we had the test done and it came back negative...thank goodness for that BUT we still don't have answers! wondering if it is celiac or somthing else. Time will tell i suppose. He is doing better this week as the stools are more like pudding with mucous and not as foul smelling but still foul. Reflux is out of control at the moment but they attribute it to teething....Prayers for all of you who do have children with CF and thank you for your kind words and support as we were being tested....
Please keep in mind that the test can't rule out CF. I've seen it too many times that children had a false negative sweat test and had to suffer a lot because the docs didn't know that. I would still try to give a little amount of enzymes and watch for a change of the stools. PeaceTorsten, dad of Fiona 7wcf<a target=new class=ftalternatingbarlinklarge href="http://health.groups.yahoo.com/group/cfparents/">Visit the largest Mailing List for Parents of Kids with CF</a>
Would just like to add to the previous comment on not counting on sweat tests. I don't want to alarm you. But reality is there. My 4 yr old had sweat test @ 18 mos old, borderline, re-taken, negative. About 5 mos later, we were sent to gastro doc & a pulmonologist. Gastro blew us off, pulmonologist decided to do bloodwork for a ton of things, said he'd do DNA for CF too, just to say they'd done it & ruled it out........but prob wasn't CF. 2 wks later, got call back from doc saying it's CF. One of the mutations is a mild form, thank the Lord, but it explained EVERYTHING weird that had been going on with his little body. He's doing extremely well now, now that we know the problem. Now my almost 6 yr old is going to be tested. He doesn't exhibit much as far as symptoms, but we've had recent leg pain which has caused our CF docs to want DNA done to make sure. His sweat test was also negative. I highly doubt he has it, but my heart will feel better knowing for sure. Again, I don't want to scare you, but the reality is out there. I've just learned recently also that there are many men that go their whole lives w/ CF & never know it until they marry & go for fertility testing. They find out they're sterile........because they have CF. The array of possibilities is pretty wide, from what I'm learning. Just keep an open mind & keep praying. And remember, our children are gifts to us. No matter how long, we only have them for a "short" time. Keep your chin up! It'll all be ok.
I am so glad your test came back neg but, as the above replies state don't rule it out completley. I have six year old twins with CF and our test did come back pos. Our MD decided to go ahead with the blood test to be 100% sure and they were pos. If you are still having trouble later I would request the blood work. You do want your child on the meds as soon as possible. We had so many problems with our MD in the beginning that we had to switch doctors. The boys were 8 weeks premature and they kept telling me I was just over protective and in time they would be fine. Trust me a mother and father know when things are not fine. I knew that my precious little boys were going through something major and nobody seem to care. When we switched MD's he started running all sorts of test on the boys due to their weight and all the chest infections and ear infections that they were having. Thank the dear lord above that some doctors don't think moms are just overprotective. Good luck we will be thinking of you.Mom to twins with CF
You didn't mention his weight. Has he been following his growth curve with consistent weight gain? Cfers a lot of times don't gain weight well without enzymes. One good thing is I am pretty sure that cfers also don't have regular ear infections. My two children have never had ear infections, and their cf doctor told me it is more difficult for those with cf to get ear infections. But I am sure there are some parents here who will tell you their kids get ear infections. Cf tends to vary from person to person. That is wonderful that your doctors are testing you son, so you can hopefully put your fears to rest. Sharon, mom to Sophia, 3 (yesterday!) and Jack, 10 months both with cf