Ode to Enzymes

Enzymes, Enzymes

We adore Thee

You make digestion

Possible for Crosby Lee

You've probably heard both Lance and I talk about "Enzymes" and I know we referenced them in my informational posts on CF. Today I thought I would load you folks up with all you ever wanted to know about enzymes!

By way of background, and forgive me if I'm repeating myself here, Crosby's CF affects his pancreas and causes him to be pancreatic insufficient. Pancreatic insufficiency is the most common gastrointestinal complication of CF. Basically, the same thick mucous present in a CF patient's lungs, is also in the pancreas ducts, which prevents the release of the natural enzymes from the pancreas into the small intestine. The lack of enzymes prevents normal food digestion which leads to difficulty absorbing nutrients.

Without the enzymes, Crosby's food passes through him quickly and this is referred to as malabsorption. Malabsorption leads to malnutrition and poor growth and development because of calorie loss. If you look at pictures of CF patients in old medical journals, the pictures of babies and toddlers are just horrendous. (The curious can google them but they're just too upsetting for me to re-post here.) They look like little skeletons with distended bellies. Without the body producing pancreatic enzymes, a CF patient is never satiated. They can eat and eat and eat but never retain the nutrients or gain weight. This is also known as "failure to thrive."

But thanks to modern medicine, Crosby and all CF patients suffering from pancreatic insufficiency have a savior in the form of capsules and made from pig pancreas. Kosher it is not! We use ZENPEP brand enzymes (pancrelipase), which contains a mixture of digestive enzymes including lipases, proteases, and amylases.

Inside each capsule are many small “beads”that contain digestive enzymes. Each bead is covered with a special “enteric coating.” This coating allows the beads to dissolve in the small intestine. The digestive
enzymes are then released in the small intestine to help digest food.

Crosby takes one capsule immediately prior to each and EVERY feeding. Here is what the capsules looks like:

You are probably wondering how on earth you give a baby a capsule, right? Well, I break it open like this:

Sprinkle it in some applesauce like this:

Then feed it to him like this:

Why applesauce? The enzyme beads in each capsule must be administered with an acidic food that has a pH of 4.5 or less. Applesauce is the best option for us but other choices include jello and ketchup! Some day, when he's a big boy, he'll simply be able to just swallow a  capsules before he eats.

As soon as the enzymes go down, he either nurses or takes a bottle of breast milk. The enzymes only work for about an hour, so it's important I feed him right away. The enzyme beads cannot be mixed with his milk because that diminishes their efficacy.

I do have to make sure that he swallows all of the enzymes before feeding like this:

We don't want any of the ZENPEP beads to remain in his mouth as they can cause sores.

Before Crosby started taking enzymes, he ate up to 14 or 15 times a day! And then he had an explosive diaper 8 to 10 times a day. The poor little guy was ravenous but could never get full. That led to one unhappy baby and one exhausted momma. Enzymes have changed our world. Now he eats 7 to 8 times a day and poops like a normal little baby. We are hoping and praying that this continues. Crosby's dietitian has pointed out that enzymes aren't 100% effective. And as he grows, he will need higher doses and tweaks to get the right amount for his body.

Crosby will take enzymes for the rest of his life. He will always have to have an enzyme before every meal or snack. It's not convenient, but essential for his growth, development and well being. Studies have shown there is a connection between better lung function and higher body weights - so that folks, is our goal!

I'd like to thank Mr. Crosby himself for cooperating in these photos. As you can imagine, he's not always this patient, especially when he's so very very hungry :) Thanks for reading!

Love, Carmen