Guest guest Posted October 29, 2003 Report Share Posted October 29, 2003 Sara, I understand your frustration. It took us nearly 8 months before Piper finally started having " normal " poops. She is on the Creon 10 right now (2 with each meal), and so far has done really well on them. If she snacks, she gets one Creon 5. We found that the end result was the same whether she got too many enzymes or not enough enzymes, so it was difficult to find the " happy medium " but I think that we have it right this time. I hope that you get everything straightened out with your Zach. But if I could offer one bit of advice to you.......... Go with your gut feeling, if you think that he needs his enzymes I would definitely push the issue with his doc. Katy Mom to Austin 4 no CF & Piper 15 months w/CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2003 Report Share Posted October 30, 2003 Sara, You idea is very possible. We talked to our doctor once about having this test done. He informed us that it was necessary to prevent anything from absorbing into the diaper. We were told to try and find the old disposable diapers with the plastic outside and turn them inside out, so the plastic was on the baby's bottom. We did not do the test, so I do not know where the diapers are sold. Good luck! Colleen Mom to Elyse, 2 1/2 wcf Re: oily stools again The GI doc seems to think that his gene mutations could indicate pancreatic sufficiency and his fecal fat stool test was really low. I think I have figured out why the fecal fat stool test may have been unusually low. They told me to collect the stool for 72 hours in a container. By removing his stool from the diaper, I think I was removing the stool but not the fat. The fat is absorbed into the diaper. I might need to bring this to the GI docs attention. It was done before we started seeing him. We have tried Ultrase and now we are on Pancrecarb. We used anywhere from one enzyme per meal up to six. We have been increasing and decreasing enzymes for eight months. Zach's cf doc says that 90% of the time patients start enzymes and the problem is fixed. Zach has had either all yellow mushy poop or formed poop with lots of oil. He has gone from the 10 pecentile for weight in August to 5th pecentile in October. He just can't gain weight unless he is on antibiotic for an ear infection. Then when he goes off the antibiotic he loses the weight he gained. Weird. He will be getting tubes in his ears soon, so hopefully no more ear infections. It is all so confusing. Hopefully the test results will come back quickly. Sara > I think you are right Sara. Have they tried several different types > of enzymes as well as doses? The greasy stuff is not normal. What > makes themthink he is pancreatic sufficient? (Sorry if I missed this > info. I may have skipped over it during my hiatus) > Lenora > > >Hi Everyone, > >Zach's cf doc agreed with his GI doc to try going without enzymes to > >see if Zach could be pancreatic sufficient. We won't have the > >elastase stool test results for two weeks. This morning Zach had a > >normal sized formed brown bowel movement and an enormous amount of > >oil in his diaper. I called the GI doc to tell him I was going to > >give him enzymes again and his nurse said the GI doc preferred that > >he not be on enzymes, but it was ok to try them again. I am so > >confused. What is this oil if it is not fat malabsorption? I have > >a strong suspicion that Zach is pancreatic insufficient and we just > >haven't found the right dosage or right enzymes yet. > >Sara - mommy of Zach 20 months > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2003 Report Share Posted October 30, 2003 The really cheap diapers at the grocery store usually are the plastic covered kind. Dawn mom of 4, 7 and under, the youngest wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2003 Report Share Posted October 30, 2003 We have been using the GSH now for about 6 weeks and really haven't seen a whole lot of changes in my girls until today. There stools look TOTALLY NORMAL!! In fact my oldest complain to me that she is having a little problems getting her stools out. Can you BELIEVE THAT!!! I didn't think there stools could ever look totally normal. We go into clinic on Tuesday I will let you all know how things go. Wish me luck!!!! and keep you fingers cross that it has help to keep the bacteria's away. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2003 Report Share Posted October 31, 2003 In a message dated 10/30/2003 11:19:26 PM Central Standard Time, Najnest@... writes: That's great Deb. What GSH are you using? jan Thera Naturals Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2003 Report Share Posted October 31, 2003 We keep hearing this each day. Our orders are soaring. I hope the others who are planning trials will hurry them up . It sure is less expensive they any other treatment & works well with the other necessary meds too. Great news for you, LOVE & HUGS, GrandmomBEV Re: Re: oily stools again We have been using the GSH now for about 6 weeks and really haven't seen a whole lot of changes in my girls until today. There stools look TOTALLY NORMAL!! In fact my oldest complain to me that she is having a little problems getting her stools out. Can you BELIEVE THAT!!! I didn't think there stools could ever look totally normal. We go into clinic on Tuesday I will let you all know how things go. Wish me luck!!!! and keep you fingers cross that it has help to keep the bacteria's away. Deb A Quote Link to comment Share on other sites More sharing options...
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