Enzymes

[SARAHSARH253]

Hi there,

My son has CF clinic tomorrow, and I know he hasn't gained any weight in the last 2 months. For the last 4 months his food seems to go right through him. This was an issue a couple years ago, and switching from to Creon to Zenpep did the trick. Curious what new Enzymes might be on the market. I'm 90% sure ths is what is causing his recent issues. I'd love to up his enzymes, but he is at max dosage. Thanks for any input!!


Sarah

Mommy to Johnny almost 5 w.cf & Bailey 2 no cf

 

[Rebjane]

Pancreacarb is back on the market, I heard. It has a new name(can't remember right now). This helped my daughter alot when she was maxed out on doses. Do you use a probiotic daily? Also, using a acid blocker can help as well.

What I have done that has immensely helped my daughter is when Pancrecarb was removed from the market; We used Creon and gave her a very small dose of sodium bicarb with every meal and snack. Sodium bicarb is baking soda(we use a tablet and quarter it). It is used as a buffer to make her enzymes work better. She gained like 5 pounds in a month. SHe is now in the 90% for her weight.. I have even taken her off Prevacid recently. Of course I did all of this working with our CF doc and nutritionist.

Just some ideas for you.

 

[Mommafirst]

I was going to mention that pancreacarb is back on the market. I think the generic is pancrelipase, but I don't know the new name. I'm excited because it works the best through the feeding tube. I hope you get this figured out with Johnny!!!

 

[MommaKas]

My daugther was diagnosed in 2010 right before her 10th birthday... to make a long story short, they started her on zenpep, and it worked for a few months, then stopped. They kept upping her dosage until she maxed out, then switched her to Creon... the creon never really worked, so they kept upping her dosage until she maxed out on that too... finally they switched her to Pancreaze, and so far that one has worked the best and the longest... it is the pancreaze 21,000. But I have heard they recently approved another enzyme as well... hope this helps <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[kitomd21]

Strange how there is so much variation. Creon was horrible for DD...Pancrease was okay...Zenpep has been the best.

 

[mindy515]

Rebjane, what does the Sodium Bicarb do?

 

[Rebjane]

Mindy,

Sodium bicarbonate acts as a buffer making the stomach less acidic to help make the enzymes work better. Every CF kid is different and I found that this helps my daughter's digestion. The way I administer the sodium bicarb was my suggestion and the CF clinic went along with it. They have also suggested a few other patient's do this when Pancrecarb was off the market waiting for FDA approval; after my daughter had good success with this method.

 

[SARAHSARAH253]

Thanks Everyone!! Clinic went awesome, and he did gain weight after all<img src="i/expressions/face-icon-small-wink.gif" border="0"> Johnny has been on Prevacid & Bio Gia (Probiotic). They gave us a sample of Creon, and it seemed to do the job yesterday. Going to use the Creon samples gain today, and see if we get the same results. If all goes well we will switch enzymes. In the past Creon didn't work so well, and I'm a little skeptical. Relieved his cf appointment went so well and thrilled we dont have to go back for 3 months<img src="i/expressions/face-icon-small-wink.gif" border="0">) Thanks Eveyone!

Sarah

 

[gere]

Please help me!

I'm Olivia and my son was born with CF as well, now he's 4.
I'm writing from Europe, very pleased to read your blog
In Europe is not possible to buy Zenpep neighter any similar product which can contain that high level of amilase and protease.
We would like to try Zenpep enzyme because the Kreon is not that effective and has very low amilase- protease enzymes. Somebody has an idea how it could be obtained Zenpep 5000?
I have relatives in Florida, they would help with the payment and sending.
We're interested about any solution, for example if somebody is not satisfied with the product, We could buy it from them.
Maybe if you can order more and sell us the rest...

Hopefully I didn't bother you with my letter,wishing you the best,

Sincerely yours,

Olivia
olivia6500@gmail.com

 

[Tisha]

Hi Gere, I have the same issue: I live in Spain and ever since Pancrease was discontinued, I've had real trouble with Creon and lost 4 kg (8-9 pounds). They've doubled my dose of Omeprazol to two a day, but that hasn't been very good. I'll try the bicarbonate! How much is a proper dose? A teaspoon?
Thanks!