My daughter was recently diagnosed with cf and I'm realizing how frustrating these enzymes can be. Am I off base expecting her stools to appear completely normal or will they always be a little greasy and yellow? She is on Creon and she is at her maximum dosage. They have definitely helped a lot with the frequency and quantity but they still don't seem normal. Can anyone shed some light on this for me? I also wanted to say I was absolutely devastated when we got her diagnosis(she was diagnosed the day after my new daughter was born) but reading your posts has made me feel much better about our situation. Thank you.
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I need help with enzymes
- Thread starter allie1
- Start date
NoDayButToday
New member
I was also on Creon and didn't like it. Even though I was very responsible about taking them, I often had unpleasant stools, gas, etc. It is not normal to have greasy, yellow stools all the time (unless she has a particular diet- like a formula or something); don't be afraid to ask the doctor to play around with enzyme brand. I've always done best on Pancrease, but that's just me. Sometimes it takes a little experimentation to find the best enzyme for you. Good luck
AbsintheSorrow
New member
Even with enzymes, I would never expect her stools to be normal if I were you. Remember, the natural ones are always the best and ours don't work. So we need the fakes, but they still don't work as well as your natural ones do.
We played with enzymes for a long time before we figure it out. There will always be times, or maybe all the time, when stools are greasy. Are you giving her a high fat diet? We did that for a long time, on the recommendation of our CF team, and she always had malabsobption. Try reducing her fat intake and you may see a difference. Our daughter is actually growing better and is more healthy since we reduced her fat. She no longer has tummy pains and her stools are back to normal. She is 4 now but around the age of 3 she started to associate eating with tummy pains and didn't want to eat. Now she loves food and is doing well. If the enzymes can't help her digest all the fat then don't give her so much of it at once. Just something to consider. In addition, I just want to say that the first year is the hardest. I imagine that it is even tougher for you with a newborn in the house (congratulations by the way). Once you fall into a routine you will become a lot more comfortable with the diagnosis.Heather
<blockquote>Quote<br><hr><i>Originally posted by: <b>allie1</b></i>My daughter was recently diagnosed with cf and I'm realizing how frustrating these enzymes can be. Am I off base expecting her stools to appear completely normal or will they always be a little greasy and yellow? She is on Creon and she is at her maximum dosage. They have definitely helped a lot with the frequency and quantity but they still don't seem normal. Can anyone shed some light on this for me? I also wanted to say I was absolutely devastated when we got her diagnosis(she was diagnosed the day after my new daughter was born) but reading your posts has made me feel much better about our situation. Thank you.<hr></blockquote>my CF-daughter is 19month old and is on CREON. The dosage is always adjusted (and very very close to the max) based on the analysis of her stools (grease rate). As said by the experts here, the stools will never be normal. To me the color seems stranger however, just like if your daughter was only drinking milk. What is she eating or drinking ?
Hi, My 6 year old is on creon 10. While on the enzymes she tends to get very constipated and once she got backed up so badly that she needed a special type of anema in the hospital. Since then, she has been on Miralax which is a prescription laxative. She takes it every day and it keeps her regular. However her BMs are always yellow and a very soft constiency. (no fat though). Your daughter definety shouldn't be having grease in her BM's. She may need to take more enzymes, ask her dr.
Hi,my grandson is also on the miralax.Which like you say helps alot,but he also has yellow bm's.But then again he has always had yellow bm's and soft.Our dr seems to find this ok as long as there is no grease in his bm's.But I'd like to know if their is anyone who can help us with his enyzems?We have a hard time getting him to take them if there is some tecnics some can share with us please do so.He is only 3yrs old and we fight with to take them.
Hi, I was the mom who wrote about my daughter being on miralax. I had a similar problem 2 years ago with having my daughter take the enzymes. She never had given me a problem and then all of a sudden she refused to take them. For over a month she didn't take any and it was very difficult to watch her appetite increase because she wasn't absorbing the food she needed. We spoke to a psychologist at the CF center we go to and he was very helpful in giving us advice on how to deal with the situation. Our daughter is very controlling, so this is a part of her life she was going to control (she was 4 at the time). We started by taking things out of her room, and sending her there each time she refused the enzymes. Finally, when nothing else worked, we were advised by the psychologist to ignore her until she took them. This was the only thing that worked with her. She now takes them all the time and we havn't had a problem since. Good luck. Definetly get the advice of a dr, I would not have done these things without a drs advice.
I FEEL YOUR PAIN!!! At least somewhat. My son has loads of trouble with his stools and I am so frustrated with all the experimentation. Adding enzymes, changing diet, trying this, trying that... I feel like I am obsessed with his BM's (because I AM)! I don't have an answer for you yet. I have noticed a great improvement since I took milk away from him (even fat-free milk). He is being tested for lactose intolerance in a few weeks. If that does not give us any answers, I am going to talk to a pediatric gastro-intestinal doctor. I will get his stools analyzed to find out if this is as "normal" as it is going to get.Anyway, I was six months pregnant when I found out about my son's diagnosis. So I can understand your feelings about the timing of your daughter's diagnosis. We waited until after Lilly's birth to have her DNA tested. I was happy to have this beautiful new baby and my son was so excited. Yet my heart was still broken from learning he had CF and I was filled with worry for both of my children. My heart goes out to you. As you are probably learning, life goes on and, more importantly, life is still good.Good luck finding those answers. It looks like we are not the only ones searching! <img src="i/expressions/face-icon-small-smile.gif" border="0">DarlaMom of Jared (3 with CF) and Lilly (6 mo. no CF)
Thank you everyone for these posts. It seems like enzymes are a problem for a lot of people. My daughter does eat/drink a lot of dairy so maybe I need to think about limiting it. For the ones that don't give milk, do you use soy instead and do you give them a calcium supplement? Also, do your children swallow the capsules or take them in food? I'm not sure when to try and get my daughter to swallow them but she sure is getting sick of having them in applesauce everyday. Any suggestions on teaching my daughter to swallow the enzymes and when should I try?Darla, thank you so much for your post. It made me laugh because I am totally obsessed with my daughter's BMs too. Everytime she says "I have to poo-poo" my heart drops b/c I don't ever know what to expect(we've had problems with rectal prolapses too). I feel like the "Great Poop Inspector". I also know what you mean about being so happy about the birth of your new child but being completely heartbroken about your first child's dx. My new daughter's homecoming is a sad memory for me instead of a happy one and this is not fair to her. There are no pictures or video of that day and I feel sad for her for that. The day we left the hospital with my new baby we went straight to another hospital for all of Allie's initial tests. Thanks again........and you're right, I thought things would never be the same again but life does go on and it is still a good one. My daughters make me smile everyday.
I had a horrible time getting my son (3 years old) to take his enzymes mixed in ANYTHING. He flat out hated the texture. The first few weeks of enzymes were a complete nightmare because he fought it tooth and nail. I felt like I had to force him, especially since he had been having rectal prolapses... the longer he waited to take the enzymes the more he suffered with those issues. I had a little bit of luck mixing the enzymes in Cream of Wheat (the Creon 10's are pretty small and close to the same texture as Cream of Wheat). It worked for a while but was pretty inconvenient. One day at McDonalds his Cream of Wheat had gotten too cold and nasty and he would not eat it. I had him chew on a chicken nugget, but told him not to swallow. After he chewed the nugget I stuck his whole pill in his mouth and told him to swallow without chewing. It worked!!! After that he only took his pills whole. At first he would sometimes gag on them, but he eventually started taking them no problem on his own. Now I just set the pills down next to his food and he swallows them with his juice. Sometimes he does it so fast I end up looking for dropped pills on the floor because I never saw him take them! His doctors seem surprised and remark that many older kids still can't swallow their pills. I think it just depends on your daughter. If she is given the choice, she might prefer to swallow them whole, especially if she is getting sick of the applesauce. Do the doctors have your daugther on an acid reducer? Jared takes Prevacid (it is supposed to help the enzymes work better).About the poop obsession: I just made a huge accomplishment!! My kids are at my parents house for the night. I just called to check on them and I forgot to ask about Jareds BM progress. I always ask my parents a ton of questions about the latest poop. Since I can't witness it for myself, I need to know the size, color, consistency, and smell. My poor mom/dad has to give me a detailed description everytime because of my obsession. But tonight I didn't ask! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Maybe I should call them back.....Take care!Darla
Oh - I forgot to answer the milk question. No, I do not give him soy and I still give him dairy products (butter, cheese). I just notice a big problem when he drinks pure milk (even fat-free milk). He drinks a lot of applejuice and I try to buy the ones that are calcium fortified.Bye again!Darla
Hi, I am an herb specialist and can tell you that milk or dairy products causes mucos in the body. But, there is a more defiant reason mucos is created. I have an incredible testimony about a mother whose baby HAD CF. I know the herbs that she gave him to get the substances(parasites) out of the lungs. These substances were cleaned out of the lungs through the stool. These substance came out as little white mucos bugs; they were sent off to be analyzed. "They said these are the substances found in the lungs of CF paitents and how you got them out; We don't know." I have the video on the testimony. I want to help. Liquidwave@earthlink.netMKRamsey<img src="i/expressions/present.gif" border="0">
Thanks for all your help, Darla. So, did you call your parents back to ask about poop details?
My girls stayed with my mom one night this weekend and when I asked her about Allie's BMs all she said was "they looked good". I definitely needed a lot more information than that and started drilling her on the specifics. I hope my obsession diminishes with time.
I'm trying to limit her milk intake and it seems to be working a little. I have found that the higher the meal is in fat the worse her stools look. I know her dr and nutrionist said to be feeding her a high fat diet but her bms seem better when she eats a regular diet. I'm so confused about what the "right" thing to do is.
Darla, do you give your son ice cream? How does he handle it and do you give him extra enzymes when he eats it? I'm sorry I keep bombarding you with questions but this CF thing really generates a lot of questions.
Also, what do you think about that last posting??? He knows someone that HAD CF? What does that mean?
My girls stayed with my mom one night this weekend and when I asked her about Allie's BMs all she said was "they looked good". I definitely needed a lot more information than that and started drilling her on the specifics. I hope my obsession diminishes with time.
I'm trying to limit her milk intake and it seems to be working a little. I have found that the higher the meal is in fat the worse her stools look. I know her dr and nutrionist said to be feeding her a high fat diet but her bms seem better when she eats a regular diet. I'm so confused about what the "right" thing to do is.
Darla, do you give your son ice cream? How does he handle it and do you give him extra enzymes when he eats it? I'm sorry I keep bombarding you with questions but this CF thing really generates a lot of questions.
Also, what do you think about that last posting??? He knows someone that HAD CF? What does that mean?
I have spoken to our dietician about removing milk from our daughters diet and she has shown me extensive studies done which prove that milk does not cause mucus. My daughter drinks a lot of milk and has no respiratory issues, but she is pancreatic insufficient. I would just like to suggest that anyone considering taking their children off of milk should think twice. Do your research and speak to your CF team. Kids need calcium and people with CF are prone to osteoperosis.
I am not saying that either way is right or wrong because I am not a professional. I am just saying that people need to really research it and talk to their team before they make such drastic changes to their diets (or that of their children). It is not ok to change your diet simply because some of the people on this site find it beneficial. I am sure that there are equally as many people that consume milk without any problems.
Heather
I am not saying that either way is right or wrong because I am not a professional. I am just saying that people need to really research it and talk to their team before they make such drastic changes to their diets (or that of their children). It is not ok to change your diet simply because some of the people on this site find it beneficial. I am sure that there are equally as many people that consume milk without any problems.
Heather
NoDayButToday
New member
I have to agree on the milk thing. Milk is very important for calcium, and as far as drinks go it is one of the more high calorie ones. I personally drink a TON of milk and have a TON of dairy products, and people do say to me that "Milk thickens mucus so you shouldn't have it". Even if milk causes a little more phlegm in the throat, I think when you have CF, milk isn't going to make or break your lung functions or health status. BUT if you're lactose intolerant, obviously eliminating or at least reducing dairy is a good idea.
I think that herbalist's posting is a hoax. If there was a cure for CF in herbs, I think more people would be talking about it. Also, CF isn't a parasite. Sometimes sad people come onto the forums and post fake things just to get a rise out of the CFers and their families. It's kind of sick of them, if you ask me.
I think that herbalist's posting is a hoax. If there was a cure for CF in herbs, I think more people would be talking about it. Also, CF isn't a parasite. Sometimes sad people come onto the forums and post fake things just to get a rise out of the CFers and their families. It's kind of sick of them, if you ask me.
Hey - it's me again (Darla who took her son off of milk) <img src="i/expressions/face-icon-small-smile.gif" border="0"> I don't want to contradict myself, but I really do agree with the posters who frowned upon me taking milk away from my son. I am not happy that he can not drink it at this time and am hoping that will change. I hope the original poster, Allie's mom, does not do anything drastic to her daughter's diet on my account. However, I don't see how taking milk away for a couple of days could hurt. My doctor is aware of the milk issue and knows that I don't let him drink it anymore (trying to supplement with fortified juice, and cheese). But yeah - keeping him off of milk long term bothers me which is why I am trying to pinpoint the actual problem. Tomorrow he goes in for a lactose tolerance test and then we will go from there. There is definitely something going on intestinally whenever he drinks milk and I need to know why. I'm not blaming CF for the problem, but I am telling you his BMs are horrible when he has milk (even the fat free stuff).
As for the Ice Cream question - Jared has always hated it but a few weeks ago he decided that he liked it. I don't really have a good answer to your question because he hasn't eaten enough for me to recognize a reaction pattern. However, I just gave him his regular enzyme.
I agree with Coll about that one poster being a hoax. I saw it and thought "well now this thread is contaminated" and I wasn't even going to come back, but here I am <img src="i/expressions/face-icon-small-smile.gif" border="0">
One final thought to Allie's Mom: It couldn't hurt to take your daughter in to see a gastro-intestinal doctor to get an opinion. There could be something else going on in addition to the CF, but the CF might be getting the blame for the problem. It could be something like an intestinal infection (that could be easily cleared up with antibiotics) or lactose intolerance.... I am not playing doctor and am just throwing out suggestions! But at least a GI doctor can run the necessary tests and tell you whether or not Allie's stools are as normal as they can get. If Jared does NOT have lactose intolerance, I will take him in to see a GI doctor. I really just need the peace of mind, ya know?!
This may or may not be interesting to you but: Jared was taking Bactrim for a week for a lung issue. Since then, I have seen some changes (improvement maybe?) in his BMs. I researched the drug and noticed that it can also be used to treat intestinal infections.... Now I am not telling you to go out and put your daughter on Bactrim. It just adds strength to my argument, that perhaps MY problems need the attention of a GI specialist.
I'm tired! Have a good one!
Darla
mom to Jared (3 with CF) and Lilly (6 mo. no CF)
As for the Ice Cream question - Jared has always hated it but a few weeks ago he decided that he liked it. I don't really have a good answer to your question because he hasn't eaten enough for me to recognize a reaction pattern. However, I just gave him his regular enzyme.
I agree with Coll about that one poster being a hoax. I saw it and thought "well now this thread is contaminated" and I wasn't even going to come back, but here I am <img src="i/expressions/face-icon-small-smile.gif" border="0">
One final thought to Allie's Mom: It couldn't hurt to take your daughter in to see a gastro-intestinal doctor to get an opinion. There could be something else going on in addition to the CF, but the CF might be getting the blame for the problem. It could be something like an intestinal infection (that could be easily cleared up with antibiotics) or lactose intolerance.... I am not playing doctor and am just throwing out suggestions! But at least a GI doctor can run the necessary tests and tell you whether or not Allie's stools are as normal as they can get. If Jared does NOT have lactose intolerance, I will take him in to see a GI doctor. I really just need the peace of mind, ya know?!
This may or may not be interesting to you but: Jared was taking Bactrim for a week for a lung issue. Since then, I have seen some changes (improvement maybe?) in his BMs. I researched the drug and noticed that it can also be used to treat intestinal infections.... Now I am not telling you to go out and put your daughter on Bactrim. It just adds strength to my argument, that perhaps MY problems need the attention of a GI specialist.
I'm tired! Have a good one!
Darla
mom to Jared (3 with CF) and Lilly (6 mo. no CF)
Just an update on my son's test: He took the Hydrogen Breath Test which showed that he does NOT have lactose intolerance. His test did show High Levels of Hydrogen which means an overgrowth of bacteria in the bowel. He is going to have to take medicine for that, and I don't know too many details about it since my doctor was out of the office and the nurse did not want to say too much. I think it is going to be relatively easy to treat. I AM so happy to have finally found my answer after all this time! At least it sounds like I've found my answer. We will see how it goes! And my son is going to be able to drink milk again - he will be thrilled!!
Darla
Darla
Hi there, I have two daughters (8 year-old and 7 month-old) with CF. We tried Creon with both my girls and we found that Pancrecarb MS4 and Pancrecarb MS8 work a lot better! Try asking your doctor to experiment with the enzymes. Stools improve when you get the dosage right with the enzymes, although some kids just malabsorb more than others and it can be difficult to get the grease under control but it can be done. Hope this helps. Celeste at curecfnow@msn.com
Congrats to Darla for finding out the answer to her son's unusual BMs. I'm glad he can have milk again...this will also make it a little easier for you too.
I'm thinking Creon may just not be the enzyme for Allie. We've increased the dosage and her stools look more normal but now she has more gas and she is going more often. I can't win!!!! Her next dr appointment is Sept 21st so I'm hoping we'll have a better game plan after that. It doesn't seem to be related to her milk intake so hopefully it isn't that.
Celeste, how long were your girls on Creon before you switched? Allie has been on Creon now for 2 months.
Thanks!!!
Amy
I'm thinking Creon may just not be the enzyme for Allie. We've increased the dosage and her stools look more normal but now she has more gas and she is going more often. I can't win!!!! Her next dr appointment is Sept 21st so I'm hoping we'll have a better game plan after that. It doesn't seem to be related to her milk intake so hopefully it isn't that.
Celeste, how long were your girls on Creon before you switched? Allie has been on Creon now for 2 months.
Thanks!!!
Amy