20 May 2010

No More Pancrecarb...

Each day, we receive a Google Alert giving us updates on the search words "Cystic Fibrosis."  (Google Alert is where Google's "spiders" crawl through the web looking for any new internet and blog postings that use the words you've designated on which you've requested it to alert you.  In this case, it uses the words "Cystic Fibrosis").  

At first, it was devastating to receive these Google Alert emails.  So many of the alerts are from newspapers around the US listing new obituaries of those who have recently died from the disease.

However, over time, we've simply stop reading those and focused on more important information that is being placed on the internet, particularly information about research for a cure or other vital news alerts.  

One particular news alert we came across two weeks ago was a very important one.  It turns out, the medication that Bennett takes with every has been discontinued as decided on by the FDA.  And it's discontinuation was effective April 28!

This medication that Bennett never skips...we never leave our home without...and Bennett will die if he does not continue to receive.  We panicked and called our CF Clinic, who had not informed us of such important information.

Fortunately, they worked with us to quickly come up with a solution - we would rather seamlessly change brands and use Creon instead.  Creon, a similar pancreatic enzyme, doesn't work the exact same but works similarly enough if Bennett continues to take his Prevacid.  Creon is currently approved by the FDA.

We were glad to know that this change would be relatively easy.  However, there is always the potential that Bennett's digestive system doesn't handle the switchover as well.  We have to keep a "watch out" on his poops and his weight to make sure he is digesting his food as well as he was before.  

In a person affected by CF, mucus blocks the body's natural enzymes.  This is why Pancreatic Enzyme Therapy (taking enzymes before every meal) helps those with CF.  Without enzymes, Bennett's body would never get the necessary nutrition he needs from eating...even if he ate all day long.

When placed together, the Creon (on the left) are smaller pills than the Pancrecarb (on the right).  This is good news since one day, Bennett will need to swallow up to five of these at one time.

However, right now, we open each pill and pour it on his baby food before each bottle.  Right now, Bennett takes two pills per meal.  

When we compared the two pills, we found Pancrecarb is a bigger pill but has smaller beads (much better for putting through the g-tube - if that would have ever worked).  Creon is a smaller pill but has larger beads.

It turns out that despite that Pancrecarb has submitted its paperwork for approval by the FDA, it has yet to receive the green light...which we hope it does.  After using this medication day after day, we've become fond of it and look forward to possibly using it again.

Note to self: Isn't it so weird that when you become a parent of a child who needs lots of medical care, you can actually have a bond with a specific medication or piece of medical equipment?  Oh, the neuroses we have!  


  1. We were just told last week at Lucy's clinic day, that there is still a chance that Pancrecarb and Ultrase can still be approved but it will take more paperwork (but he pharmaceutical company) and time. Lucy was just switched to Zenpep after two years of struggling to find the right one. We originally started her on Creon at birth and that worked for about a year and then suddenly stopped being effective. We switched to Pancrecarb for roughly another year or less before it became ineffective as well. So far, now that we have gotten all the Zenpep kinks out and our insurance drama is over, the Zenpep is working fabulously...for now.

    I hope with time the FDA will see that there are so many people who need these medications, and they have already been effective WITHOUT the FDA approval. In some cases, the FDA is there to protect us, but in most cases it inhibits the healthy outcome of thousands of people. I wish they could get their shit together!

    Good luck with the Creon! :)

  2. Curious to hear how the enzymes work for you. We did not have a good experience with the zenpep. Hopefully something gets worked out. Hope all is well for you.

  3. LOVE this post. We are on Creon too. I love the photo comparison of the two. VERY interesting. I have a love/hate relationship with enzymes. I love that our boy takes them and can actually digest his food. I hate the tedium and frustration of getting a very busy and sometimes disagreeable preschooler to take them before every single snack or meal. Can't wait til he can swallow pills. We really need to work on that. Good luck to little Bennett!

  4. This site was an interesting find on the internet. I have an intimate knowledge of Pancrecarb and have seen wonderful results in many patients. I pray everyday that this enzyme will be on the market again soon. I hope your child continues to do well on Creon but there are many children who are exclusively fed through a G-tube and are suffering. I get comments and impact statements frequently. Keep the faith and I will too.

  5. I have a 14 year old grandson, Brent who has Cystic Fibrosis and the Pancrecarb MS 16 is the only enzyme that works for him My daughter has been in touch with the maker of this drug Digestive Care in Bethlehem, PA Senator Charlie Dent from Pa is also trying to help to have the FDA hasten the approval of this drug Brent has been on this medication for 8 years and they are runing very low on his supply of it due to the FDA dragging there feet over this I urge anyone affected by CF to contact their congressman to help Congressman Charlie Dent in rectifying this as quickly as possible


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