When people think about CF, they typically think of the respiratory side of the disease, but that’s only part of the condition. The digestive system is also heavily involved, and the vast majority of patients are pancreatic insufficient, meaning their pancreas doesn’t function properly because of the thick, sticky CF mucus clogging it up. It is believed that over 90% of CF patients are pancreatic insufficient and need enzymes to properly digest and absorb nutrients from food. So far, Judith is one of the very lucky minority that is pancreatic sufficient and does not need to take enzymes, although we did give them briefly early on while we were trying to figure out some GI issues.
As mentioned earlier, pancreatic enzymes help CF patients absorb nutrients, to digest carbs, proteins, and fats, and to help them gain weight. Without enzymes, patients who are pancreatic insufficient will suffer from malabsorption and will not be able to gain weight (as a side note, some patients who are pancreatic sufficient, like Judith, may still have problems with weight gain because of the disease, so weight gain issues aren’t necessarily isolated to those who are pancreatic insufficient).
Enzymes are taken with meals, and while there are some exceptions of foods that do not require enzymes, most do require them. Dosing depends on the patient, and the CF team will help determine the proper amount, but a lot of parents and patients also get really good at adjusting the dosing depending on what was consumed.
For more information on pancreatic enzymes, you can read the informational pamphlet from the Cystic Fibrosis Foundation: http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Diet/EnzymeReplacement/Nutrition-Pancreatic-Enzyme-Replacement.pdf
Source: http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Diet/EnzymeReplacement/Nutrition-Pancreatic-Enzyme-Replacement.pdf
Showing posts with label enzymes. Show all posts
Showing posts with label enzymes. Show all posts
Sunday, May 11, 2014
Wednesday, May 9, 2012
CF Factoid #5
CF doesn't only affect the respiratory system. It also affects the digestive system - the abnormally thick mucus a CF patient's body produces clogs the pancreas and disrupts the flow of natural enzymes which help break down and absorb food. Artificial enzymes help replace those that the body fails to make.
Monday, February 20, 2012
We Got the Test Results Back
This is HUGE: Judith is still pancreatic sufficient! Woo hoo! We can stop the enzymes with her next meal!
They're still going to monitor her closely because she had many of the symptoms of pancreatic insufficiency, and I did notice a difference in her poops within a day or 2 of starting the enzymes. We still have a long road to go with this, as things can change at the drop of a pin, and the odds are still stacked against her. But for now, it's one less thing for us to worry about!
Excitement!
Friday, February 10, 2012
Enzymes Are Working!
And what a difference it has made! She's still going about 2 times a day, but the amount has decreased, the color is more normal, and they don't smell nearly as bad. TMI, I know, but there's no other way to describe it. Who would've thought I'd be this excited over poop of all things!
Still no word from the clinic on her lab results, but that's to be expected. It hasn't even been a week, so I don't really expect to hear anything until closer to the end of the month (like around President's Day).
In the meantime, I'm working on gathering a few things to help organize/make giving the enzymes easier. One of my mommy friends suggested getting a pill sorter, and measuring out the doses for the day into that. Right now, it's an easy dose to measure (it's only 1 capsule, after all, but they are kind of a pain to open), but getting into this habit now will help me stay organized if/when we have to increase the dosage - at least before she learns how to swallow pills, which is years away!
I'm considering taking out stock in applesauce, particularly for those resealable squeeze pouches (which Judith loved before this). We're not using a large amount each day, but the total amount consumed will probably add up quickly when you figure she gets a spoonful 7 times a day to take her enzymes.
This adjustment hasn't been as bad as I thought - knock on wood John & I have been doing well remembering to give her a dose before every meal, but we also haven't been anywhere outside of the house where we've had to give her the enzymes. My timing of errands this week has allowed for us to be out of the house in between meals, but logistically I know that can't last forever. I'm sure it won't be as bad as I expect, but for some reason that first time always seems so daunting in your mind.
Tuesday, February 7, 2012
Clinic, Screaming, and Enzymes... Oh My!
Yesterday we took Judith to the CF clinic to get her checked for the concerns I've been having with the change in her poops - she was supposed to go for her routine visit in 2 weeks, but her pulmonologist wanted it bumped up after I called them last week about her lack of weight gain.
We arrived at Hershey, and Judith enjoyed her ride in her stroller, acted perfectly normal checking in and in the waiting room, and was even interested in the nurses at first. Then they made the mistake of attaching the pulse ox monitor to her finger, and she began to scream bloody murder (must've been that pesky cruciatus curse again...). Nothing was making her happy/consoling her, and she howled for a good 5 minutes through the rest of her vitals and her weighing. Doing the naked weight pissed her off even more, but at least we got an accurate weight this time: 18 lbs 7 oz - she did gain a bit, but definitely not enough in the last month alone, let alone enough to be adequate from her last visit. Needless to say she's not on the charts again, and this symptom is lining up with everything else.
After the nurse left, Judith calmed down and played with one of those bead roller coaster things (you know, the kind where you push the beads around on the little twisted pieces of metal) that they have in the room. Lucky us, she decided to poop while she was playing, saving us the task of collecting a stool sample at home!
She was fine the entire time the nutritionist and social worker were with us, but as soon as Dr. G walked in she started side-eyeing people. We talked about all of her symptoms that she's been having, symptoms that prompted my concerns about possible pancreatic insufficiency and malabsorption. Dr. G and the nutritionist both looked at her poop and said that by the looks of it and based off her symptoms, it looks likely that she is becoming insufficient, but we won't know for sure until the lab results come back. They did say that this particular poop didn't look too bad (it wasn't one of her messier ones, and this was one time when I was kind of hoping that she would give a messier one so they could really see what's going on), but it's definitely giving them a red flag.
Dr. G examined Judith to make sure her lungs are still clear, and this prompted another scream fest. He wanted to look in her ears, and it took about 3 of us to accomplish that task. The throat culture was a little easier, as I managed to put her in a straight jacket hold so Dr. G could take the quick swab. As soon as he left the room, she was fine. He came back in, and she started fussing again. And after leaving the final time, she calmed down. It was hilarious!
Anyway, the team came to the consensus that it would be better to start Judith on pancreatic enzymes now, send the poop to the lab for testing, and once both tests are back (the one test takes about 2 weeks to run and send results for, and that tests the elastice in the poop - it's the more important of the 2, and will give us definitive results) we can stop the enzymes if need be, or we will be told to continue them. This really was not a shock to me - with everything I've been seeing, I went into the appointment figuring we'd have to do this. Now we just need to adjust to the changes in our routine, and remember to give her the enzymes every time she eats.
We arrived at Hershey, and Judith enjoyed her ride in her stroller, acted perfectly normal checking in and in the waiting room, and was even interested in the nurses at first. Then they made the mistake of attaching the pulse ox monitor to her finger, and she began to scream bloody murder (must've been that pesky cruciatus curse again...). Nothing was making her happy/consoling her, and she howled for a good 5 minutes through the rest of her vitals and her weighing. Doing the naked weight pissed her off even more, but at least we got an accurate weight this time: 18 lbs 7 oz - she did gain a bit, but definitely not enough in the last month alone, let alone enough to be adequate from her last visit. Needless to say she's not on the charts again, and this symptom is lining up with everything else.
After the nurse left, Judith calmed down and played with one of those bead roller coaster things (you know, the kind where you push the beads around on the little twisted pieces of metal) that they have in the room. Lucky us, she decided to poop while she was playing, saving us the task of collecting a stool sample at home!
She was fine the entire time the nutritionist and social worker were with us, but as soon as Dr. G walked in she started side-eyeing people. We talked about all of her symptoms that she's been having, symptoms that prompted my concerns about possible pancreatic insufficiency and malabsorption. Dr. G and the nutritionist both looked at her poop and said that by the looks of it and based off her symptoms, it looks likely that she is becoming insufficient, but we won't know for sure until the lab results come back. They did say that this particular poop didn't look too bad (it wasn't one of her messier ones, and this was one time when I was kind of hoping that she would give a messier one so they could really see what's going on), but it's definitely giving them a red flag.
Dr. G examined Judith to make sure her lungs are still clear, and this prompted another scream fest. He wanted to look in her ears, and it took about 3 of us to accomplish that task. The throat culture was a little easier, as I managed to put her in a straight jacket hold so Dr. G could take the quick swab. As soon as he left the room, she was fine. He came back in, and she started fussing again. And after leaving the final time, she calmed down. It was hilarious!
Anyway, the team came to the consensus that it would be better to start Judith on pancreatic enzymes now, send the poop to the lab for testing, and once both tests are back (the one test takes about 2 weeks to run and send results for, and that tests the elastice in the poop - it's the more important of the 2, and will give us definitive results) we can stop the enzymes if need be, or we will be told to continue them. This really was not a shock to me - with everything I've been seeing, I went into the appointment figuring we'd have to do this. Now we just need to adjust to the changes in our routine, and remember to give her the enzymes every time she eats.
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